Cancer patients, disabled people and other clinically extremely vulnerable groups say they will feel unsafe stepping the house after hearing that mask and social distancing requirements are to be abandoned, charities have warned.
Campaigners estimate that 3.8 million people have been left feeling abandoned by the government’s shift towards promoting “personal responsibility” as the sole means of navigating the surging Covid-19 infection rates in England.
It means many people wary of coming into close contact with others who are infected will have to resort to self-imposed shielding.
The new government guidance for England advises those most at risk from the virus to continue to be cautious, meeting friends and family outside where possible and wearing face coverings on public transport.
Many vulnerable groups, such as those with underlying conditions or elderly people who shielded last year, were prioritised for vaccination. Roughly half of the UK is now fully vaccinated but Covid-19 cases are once again surging, driven by the highly transmissible Delta variant and the lifting of some restrictions.
Certain people with underlying conditions have weak immune systems that render the vaccines less effective, leaving these groups anxious about their fate.
“Macmillan Cancer Support is hearing huge anxiety about the removal of restrictions at the same time as cases are rising very fast,” said Steven McIntosh, Macmillan’s executive director of advocacy and communications. “Cancer patients feel they’re at risk of just going backwards, and feel unsafe stepping outside the house.”
It was “very frustrating”, McIntosh added, as the government had publicly confirmed its plans to discard almost all Covid social restrictions on 19 July but then released guidance for clinically vulnerable people only later in the evening, without consultation with the groups representing and supporting those individuals.
He said: “The government hasn’t learned the lessons of the past where big announcements for the whole of the country about … changes to restrictions weren’t accompanied by advice for those people who are most at risk and most anxious about those changes.”
Clinically extremely vulnerable people also include those with Down’s syndrome, cystic fibrosis and severe chronic obstructive pulmonary disease.
Louise Rubin, the head of policy and campaigns at the disability equality charity Scope, said: “Throughout the pandemic clinically extremely vulnerable people have felt forgotten and that their lives are seen as expendable. This guidance will make many clinically extremely vulnerable people feel they are on their own, having to rely on others taking responsibility, and without the support to keep themselves safe.”
Elizabeth Cleaver, a solicitor at the London-based law firm Bindmans LLP, said her firm had had a number of inquiries from concerned parents who had been shielding their clinically vulnerable children and were keen to have them vaccinated against Covid.
Although the Medicines and Healthcare products Regulatory Agency has given the green light for the use of the Pfizer/BioNTech vaccine for children over the age of 12, the Joint Committee on Vaccination and Immunisation (JCVI) has not yet issued a recommendation for vaccinating under-18s.
Cleaver said: “We haven’t issued proceedings because we are awaiting confirmation as to whether there is going to be some JCVI guidance published this week … we’re giving the government the last opportunity this week to actually issue that. Obviously the opening up [of society] on 19 July has really increased anxiety for these families because their clinically vulnerable children are even more vulnerable.”
Other organisations have raised the alarm about the confusion the new measures will bring to workplaces. Businesses say they do not have the full picture they need to properly plan for unlocking.
Claire Walker, a co-executive director of the British Chambers of Commerce, said: “Business leaders aren’t public health experts and cannot be expected to know how best to operate when confusing and sometimes contradictory advice is coming from official sources. This could lead to an inconsistent approach with different businesses reopening at different times and with different requirements, which could damage public confidence, give firms a huge logistical headache, and create a real risk of the economic recovery splintering.”
Kevin Rowan, of the TUC, said the effective, enforceable health and safety guidance now being removed made things very difficult for employers. He said: “It’s going to be a situation where individuals may or may not wear face masks. Some employers may require it, others won’t. But none of those issues are going to be legally enforceable. So if you’re in the Health and Safety Executive or in a local authority’s environmental health [section], there’s nothing for you to enforce.”
Have The DWP Ended LEAP Awards?
With many thanks to Benefits And Work.
Letters seen by Benefits and Work suggest that the DWP may have reached the end of awarding back-payments under the LEAP review and are now simply writing to claimants to tell them they do not have any conditions that are relevant – even though this may be wrong. We are still anxious to hear from claimants via a brief survey if you have received a LEAP letter in the last three months.
In a decision known as MH, it was found that the DWP had been misapplying the law in relation to overwhelming psychological distress and following the route of a journey.
Claimants should be awarded the standard rate of PIP mobility if, because of overwhelming psychological distress, they need someone with them to follow the route of an unfamiliar journey.
And they should be awarded the enhanced rate if they cannot follow the route of a familiar journey without having someone with them, for the same reason.
The LEAP review was set up to identify claimants who had missed out on awards because the DWP had got the law wrong.
However, doubts about the genuineness of the review have increased because of the tiny number of claimants who have received arrears of PIP, compared with the number the DWP originally said would be entitled.
Previous letters seen by Benefits and Work told claimants that the DWP had looked at their claim again and decided that their award would not change. These were decision letters which could be challenged.
However, most of the letters claimants are sending us copies of now state that:
“The main health conditions we have for you on our system indicate your PIP claim(s) are not affected by these changes.”
The DWP said that they would look first at claimants they thought were most likely to be eligible for arrears. The fact that they are now contacting claimants they do not think are affected suggests that they have finished contacting those they view as potentially eligible.
The text of the letter also suggests that these claims are not being looked at individually by decision makers with copies of a claimant’s previous PIP application in front of them.
Instead, it is possible that the DWP is relying on the main and secondary conditions that are entered into the records ‘system’ the DWP keep on each claimant.
However, if a claimant’s mental health was not considered to be a major factor in their claim then it is unlikely to have been recorded on the system.
So, for example, if a claimant had a heart condition and COPD, then it is very unlikely that the DWP would have chosen anxiety and depression as one of their two main disabling conditions, even if it was severe.
This is particularly the case as the DWP were getting the law wrong and taking very little account of anxiety in relation to mobility.
Certainly, claimants we are hearing from who have received these letters are telling us that they do have conditions such as PTSD, anxiety and depression and they do consider that they should be covered by the LEAP review.
But, once again, the way the letter is written is unlikely to make claimants want to contact the DWP, particularly if they have not been following this story via Benefits and Work. In particular, nothing in the letter tells claimants that their award will only go up, not down, if they are affected by LEAP.
These letters do not appear to be decision letters, they do not carry a right of appeal. They are simply informing claimants that the DWP doesn’t think they are due any arrears and if the claimant thinks differently they need to contact the DWP.
Claimants are invited to ‘talk to your carer, family and friends or your support worker’ if they need some help to find out if they might be affected. The letter doesn’t reveal why these people might have expertise in benefits law that the claimant lacks.
Benefits and Work members who receive one of these letters but consider that the LEAP review does apply to them can download our guide to PIP claims and reviews, which has nine pages solely on the subject of ‘Planning and following journeys’. Members can also view the 2 hour webinar on ‘Claiming the PIP mobility component on mental health grounds’ on the PIP page.
We are still anxious to hear from claimants who have received a LEAP letter in the last three months, whatever sort of letter it might be.
We have a brief survey, just 9 questions, that you can complete here.
The full text of the letters we are seeing follow this pattern, and are signed by an unnamed ‘Office Manager’, although there may be variations.
FULL LETTER TEXT
Personal independence Payment
Changes in PIP law
Dear [claimant],
There have been some changes in Personal independence Payment law that affect how the Department for Work and Pensions decides PIP claims.
The main health conditions we have for you on our system indicate your PIP claim(s) are not affected by these changes.
The changes are to do with:
- how overwhelming psychological distress is considered when assessing someone’s ability to follow a journey. Overwhelming psychological distress is distress related to a severe mental health condition, intellectual or cognitive impairment. It may result in a person being unable to complete a journey.
- How we decide whether someone can carry out an activity safely and if they need supervision. We now consider the seriousness of any harm that might happen, as well as the likelihood of it happening.
Who is likely to be affected
The people affected by these changes will most likely have a severe:
- cognitive impairment
- intellectual impairment
- developmental impairment
- mental health condition
Or a condition affecting the brain or nervous system with symptoms such as:
- blackouts
- fits, or
- faints with loss of consciousness
If you think your PIP claim(s) could be affected by these changes please phone or write to us using the details on the front page of this letter. If we need more information from you, we will contact you to request this. If you do not currently have a PIP claim or award and your circumstances have changed you may need to make a new claim.
If you need some help to talk about whether you might be affected you can also talk to your carer, family and friends or your support worker. Local support organisations can also provide independent help and support. You can find their details online, at your local library or in the telephone directory.
There is more information about these changes on http://www.gov.uk/dwp/pip-changes
Yours sincerely,
Office Manager
A man seeking disability benefits has claimed he was misrepresented in a report made by Capita, the firm which assesses benefit claimants.
A Nolan Show investigation found that he was first assessed by Capita and scored zero points – meaning he was classed as not needing benefits.
The Department for Communities looked at his case again and also scored zero.
The Nolan Show knows the testimony given by the man to both Capita and the department.
It shows how his answers appear to have been misreported in the final assessments.
It comes after a scathing report from the Northern Ireland’s public services ombudsman, Margaret Kelly, on the system for Personal Independence Payments (PIP) assessments.
Capita provide the assessment service on behalf of the Department for Communities.
Communities Minister Deirdre Hargey has committed to bringing the service in-house and has said people have the opportunity to appeal to an independent tribunal.
Significant debt problems
Mark, which is not the man’s real name, is a vulnerable adult with a history of mental health issues, including depression and anxiety.
He told disability assessors that he was not able to leave the house on many occasions due to the extent of his anxiety.
The Capita assessor asked him: “And would you look at the internet? eBay, Amazon, YouTube?”
Mark responded that he would go on YouTube but for “the likes of Amazon, I just don’t have the money to buy anything”.
However, Capita’s official report claimed Mark said “he will surf the internet and shop online”.
Mark also told Capita he had significant debt problems after being asked whether he pays his bills.
He added that the Citizens Advice Bureau had set up a debt management plan to help him.
However, Capita wrote in its assessment: “He states he can make simple purchases and understands the value of money. He states he will pay his own bills and has good memory and cognition.”
The Department for Communities heard a “mandatory reassessment” of the scoring and Mark also told the department he had “a debt management plan with the Citizens Advice Bureau Lisburn for £55,000 worth of debt”.
However, the department gave him zero points for his ability to manage complex budgetary decisions.
‘Difficulty washing and walking’
After getting no points from Capita for incontinence, Mark told the department’s appeals service of instances of severe incontinence. He was awarded no points on reassessment.
He also reported not washing himself for up to 10 days at time, how his son would help him shower and that he had difficulty walking. Again, he received no points.
The Department for Communities said the minister is committed to ending privatisation of the service and bringing it “in-house” in partnership with the Department of Health but that such a partnership was “not currently feasible”.
“A number of improvements to the assessment process have already been introduced, including the completion of PIP award reviews in-house, where sufficient evidence is available,” they added.
“This has reduced referrals to the PIP assessment provider by 25%.”
In a statement, Capita told the BBC “all our assessors are qualified healthcare professionals including former NHS nurses, physiotherapists, occupational therapists or paramedics”.
It said the assessors have been “specially trained in assessing disability needs” and are supervised by the firm’s clinical governance team, which also consists of current and former NHS staff.
“A sample of claimants are surveyed monthly following their PIP assessment by an independent research company. Over the last 12 months, more than 98% of those surveyed have said they were satisfied or very satisfied with our service.”
Hollyoaks star Rhiannon Clements has opened up about playing Summer Ranger on the Channel 4 soap, praising the series for its on-screen representation of disability.
Summer first appeared in the village back in 2020, with the daughter of the evil Cormac Ranger soon carving out her own villainous path – something Rhiannon is proud of in more than one way.
Speaking to Enable Magazine, Rhiannon opened up about being an actress with an upper limb difference, explaining why Hollyoaks‘ on-screen portrayal of disability has been “important”.
Sharing the reaction she’s received from viewers, Rhiannon said: “My favourite part is when I get messages from people who have seen me on Hollyoaks and they have an upper limb difference, or a member in their family does, and seeing me has made them more confident. Even showing the representation has been important.”
It’s not just the visibility of Rhiannon’s limb difference that has helped, the ‘Oaks star added – it’s also the show’s decision to cast her character as a baddie.
“What is brilliant about being in Hollyoaks and playing Summer, she is a villain and that is part of the character and she’s not someone to look after,” she explained. “Just because of your physical attributes, that doesn’t dictate the type of person you are.
“Actually, this character is a nasty piece of work and it has nothing to do with her physical attributes.”
Reflecting on the impact of her role, Rhiannon added that she would continue to “give back” thanks to her new-found following from Hollyoaks.
“It is great to be able to work with Superhero Series and give back and show that we’re all in this together, and we’re battling against the lack of representation and everything that is wrong with disability representation,” she said.
Terminally ill people with less than a year to live will get fast-tracked for benefits after ministers said they will expand the timeframe for those eligible for special consideration.
Previously patients had to prove they had less than six months to live and charities say many died without their cases being resolved.
It is two years since a government review was launched into the issue.
Campaigners say it is a “significant step forward”.
They have been seeking a change to how terminally ill people access benefit support, known as Personal Independence Payments (PIP).
Under the current rules, patients in England and Wales must provide medical proof that they have six months or less to live to access benefits quickly and at a higher rate.
And if they live longer than three years after benefits are awarded, they have to be reassessed.
Charities and some MPs say people have endured distress trying to wade through red tape, filling in forms and attending interviews with benefits advisers.
And some patients have died waiting for the welfare benefits they need.
Do I only have six months to live?
Helen Nicell, who has stage 4 cancer, told the BBC her payment was reduced initially when she was moved from disability allowance to PIP because a doctor could not say she was likely to die within six months.https://emp.bbc.co.uk/emp/SMPj/2.43.6/iframe.htmlmedia captionPersonal Independence Payments: ‘Have I less than six months to live?’
She said: “To have to ask your consultant – do you think I may only have six months to live – when really they can’t answer that, it’s a very, very difficult question and very difficult to live with.
“The consultant said it was actually impossible to put a prognosis on how long it would take.
“The cancer is in my spine and at any point it could spread in to one of my organs” she said.
She added: “When you have retired from work and you have a budget and you have no other income” the uncertainty of waiting for an assessment to come through is very hard.
In a written statement to MPs, Minister for Disabled People, Justin Tomlinson, said the changes will “increase much needed support for people who are nearing the end of their lives”.
He said the new 12-month approach “will ensure people get the financial help they need as quickly as possible in the most challenging of times.”
“Under the updated rules, clinicians still have discretion and will be supported by a realistic and straightforward definition” he added.
In an interview with BBC News, Mr Tomlinson said under the special rules, payments can be made within four to five days rather than 16 weeks.
He said the changes will bring the benefits system in line with the NHS definition of terminal illness, which is having less than twelve months to live.
“What clinicians were telling us was about removing duplication”, he said.
“The GP and the patient would have this devastating awful conversation at 12 months as part of the NHS role and then they would have to come and have it a second time with us to get the GPs the [benefits] form at six months”.
Matthew Reed, Chief Executive of Marie Curie welcomed the announcement as a “significant step forward”, and a “tribute to all those who bravely shared their experiences of the benefits system”.
“This will help ensure that more dying people can concentrate on making the most of the limited time they have left, rather than worrying about their finances.
“There is more to be done, but this is important progress and we look forward to working with the UK Government to bring in this change as quickly as possible”, he said.
Sally Light, CEO of the Motor Neurone Disease Association said the recommendations “must be implemented quickly”.
“No more people already facing the most difficult time of their life [should] have to wait to claim the support they not only desperately need but are entitled to”.
The changes will not happen immediately – ministers say the law will be changed within 12 months “when parliamentary time allows”.
The reforms in England and Wales follow similar pledges in the devolved administrations in Northern Ireland and Scotland.
Last week the Stormont Assembly signalled it intended to scrap the six month rule for those with terminal illnesses.
And in 2019, Holyrood said it intended to do the same, with guidelines for clinicians due to be published this summer.
A woman with Down’s syndrome who is challenging abortion law’s stance on babies with the condition says the legislation “doesn’t respect my life”.
Heidi Carter, 26, from Coventry, is one of three claimants whose case against the UK government at the High Court began on Tuesday.
As law stands, foetuses with Down’s syndrome may be terminated up to birth.
Jason Coppal QC, the claimants’ barrister, told the High Court the current law “stereotypes and demeans”.
He told Lord Justice Singh and Mrs Justice Lieven that claimant Máire Lea-Wilson “believes it is morally and ethically wrong to destroy a life on the grounds of a disability.
“But what we will try and establish is that it is legally wrong”.
Lawyers argued at the two-day hearing that the law is incompatible with the European Convention on Human Rights and therefore unlawfully discriminatory.
“Two of the claimants are in the minority of foetuses who were diagnosed with the condition and not aborted and they live happy and fulfilling lives, as evidence shows the majority of people with Down’s syndrome do,” Mr Coppal told the court.image copyrightPA Mediaimage captionMáire Lea-Wilson, 33, said she was offered a termination two days before her son Aidan was born
In England, Scotland and Wales, there is a general 24-week time limit to have an abortion.
But law states terminations can be performed well beyond that window if there is “a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped”, which includes Down’s syndrome.
Mrs Carter, who campaigns under her maiden name of Crowter, said: “I am someone who has Down’s syndrome and I find it extremely offensive that a law doesn’t respect my life, and I won’t stand for it.
“I want to change the law and I want to challenge people’s perception of Down’s syndrome. I want them to look at me and say ‘this is just a normal person’.”media captionDown’s syndrome: Abortion case heads to High Court
Ms Lea-Wilson, of west London, said she was bringing the legal challenge because she wanted her son Aidan “to grow up knowing he’s not someone people have to cope with, he’s not a burden to society, he is a wonderful human being in his own right”.
“I have two sons who I love and I value equally and I can’t understand why the law doesn’t.”
She said: “I was 34 weeks pregnant when I discovered Aidan had Down’s syndrome and I was asked if I wanted to terminate the pregnancy in the context of a lot of medically-biased information, and my own grief, three times.
“The last time I was asked to terminate the pregnancy was two days before he was born.”image copyrightReutersimage captionProtesters gathered outside the High Court ahead of the case
The challengers, supported by campaign group Don’t Screen Us Out, held a demonstration outside the Royal Courts of Justice in London earlier.
Mrs Carter said the legal bid was not about challenging women’s right to choose, which she respected.
But she said of expectant mothers whose unborn babies had been diagnosed with Down’s syndrome: “I just want them to get the right information, and just meet someone who has [the condition].”
Clare Murphy, from the British Pregnancy Advisory Service, told BBC Breakfast: “We’re talking about a relatively small number of abortions every year that take place after 24 weeks.
“These are incredibly challenging, heartbreaking circumstances involving often very, very much wanted pregnancies, where women have to make really tough decisions.”
Disability Benefits And Cohabitation
Benefits exist to support people in times of need. But for some disabled people, household means-testing has led to benefits being taken away making them uncomfortably reliant on their partner and in debt due to the extra living expenses disabled people incur. Rachel Charlton-Dailey finds some people have vowed never to marry or cohabit again.
“I knew he wasn’t going to support me,” says Emma*, from Essex, who had early anxieties about her relationship.
The 32-year-old and her boyfriend had been together for two years when they decided to take their relationship to the next level.
Emma moved out of her home and into his. She was excited but living together meant that her income-related Employment and Support Allowance (ESA) was immediately stopped.
ESA is granted to adults who struggle to find work because of illness or disability.
Emma, who has fibromyalgia, ulcerative colitis, and a visual impairment, is unable to work and received £114.10 a week when she lived alone. But when she moved in with her boyfriend, their income and savings were taken into consideration jointly, meaning Emma no longer qualified.
From that point onwards, she was expected to rely financially on her partner.
“I never wanted him to support me but being ineligible for benefits put me in a vulnerable position,” she says.
They agreed to split the cost of living – Emma would pay a third, using her savings to do so, while her partner would pay two-thirds, but this soon changed the dynamics of their relationship.
“He earned five times more than I did and he held it over me. I was still scraping pennies together,” she says.
“I relied on him for daily tasks a lot so it was a toxic addition to our relationship because he was only interested in caring for me under his terms. He’d only buy food he liked. Whatever worked for him had to work for me.”
Emma says the relationship became physically and sexually abusive and, looking back, he had used coercive control to isolate her from friends and family.
But with no income, she was unable to leave. And if she did leave it could take several weeks for her to be re-assessed and paid ESA once more and she wouldn’t have a roof over her head.
“When I felt the relationship was over, my second thought was ‘you can’t afford to lose this relationship, you have nowhere to go’.”
According to SafeLives, a domestic abuse organisation, disabled people typically experience abuse for an average of 3.3 years before seeking support, compared with 2.3 years for non-disabled people. After receiving support, disabled victims are 8% more likely to continue to experience abuse.
While means-testing is a widely used tool to determine how much money people should get from the benefits system, the impact of benefit reductions can be greater on disabled people because of the additional daily living expenses they have.
Extra costs like specialist equipment, powered wheelchairs, or taxi rides can set disabled people back £583 per month on average, according to the charity Scope.
This is true for Billie*, 29, from Carlisle, who has ME and Ehlers-Danlos syndrome, which affects connective tissue and can cause pain and fatigue. She relies on taxis to get to her regular hospital appointments.
Covid-19 saw her lose her financial independence when she was furloughed from a local entertainment venue. She qualified for ESA to top-up her payments, but when her household’s income was taken into account, she lost money every time her partner was rewarded at work.
“If he so much as earns £50 more for doing a tiny bit of extra work or getting his petrol covered then my payments decrease,” she says. “It got cut down even more in December when he got a brief ‘pay rise’ also known as a £100 Christmas bonus.
“This can be infantilising for disabled people, as though we can’t have our own money,” Billie says. “It also means disabled people can’t live with or marry their partners for fear of losing their only income source.”
As well as ESA, Billie received £490.20 per month through another benefit, Personal Independence Payment (PIP), which is given to people with long-term health conditions in order to cover extra living costs. It is not means-tested or affected by any other benefits you might qualify for, but Billie says they were still “scraping by” and sometimes struggled to buy food.
“The system sets us up to fail. I don’t want to be dependent on my boyfriend. I should be able to give my half, not being subbed like a child,” she says. “If you hit a bad patch and can’t work as much you’re kind of screwed.”
The current system has left some disabled people feeling they have to choose between relationships and financial security.
The Disability Benefits Consortium (DBC), a strong network of over 100 charities and disabled people’s organisations, wants this changed.
Geoff Fimister, its policy co-chair, says means-tested benefits can result in a disabled person being “forced to be dependent on a non-disabled partner”.
He says Covid-19 has likely made the situation worse and the pandemic is a “sharp reminder that there are unresolved equality issues”.
The DBC says it wants to see disaggregation – where means-testing would be taken out of the assessment and be based solely on the individual’s need.
It is this current inequality that Kelly*, 26, from Leeds, says she faced when her marriage meant gaining a husband, but losing her income.
“Nobody told me I’d lose my money when we got married and moved in together,” she says.
Kelly has EDS, Endometriosis, ADHD and uses a wheelchair. She relied on ESA as she is unable to work and didn’t live with her now-husband before they married.
Due to illness and a mix-up with appointments, she didn’t report her marriage for a month and assumed everything was fine.
Then, a dreaded brown envelope from the Department for Work and Pensions (DWP) landed on her doormat.
“I got a letter claiming I hadn’t reported my marriage, they’d overpaid me and I had to pay them a month’s worth of ESA back and they’d decided to add a £50 fine on top. They were asking for about £350 while at the same time telling me I had no claim to ESA because my husband worked.”
Kelly had no idea her benefit payments would stop because of her husband’s income and was at a loss when they did.
She was moved on to another means-tested benefit – Universal Credit – which disabled people are advised to apply for if they don’t qualify for ESA. But she says that doesn’t feel stable because their household income fluctuates each month and affects her payments.
Kelly has had the benefit stopped twice already, due to her husband’s wages coming in early at Christmas.
“We are punished simply for getting married and it feels so unfair that if I was abled and working it wouldn’t matter.”
The couple have struggled to pay bills and relied on Kelly’s parents for loans.
The DWP said: “Universal Credit and ESA provide a welfare safety net for those in most need, and as such it’s right that household income and savings are taken into account when assessing eligibility for these benefits.”
Emma managed to escape her situation when her partner ended the relationship.
But it has left her wary.
“I had become partially financially reliant on him purely because the government had stripped my right to benefits for daring to cohabit with a partner. It felt humiliating once I finally realised how vulnerable I’d been.
“In the future, I don’t plan on ever living with a partner again, to protect myself.”
*All names have been changed and those receiving ESA in this article are in receipt of income-based ESA which, although widely still in-use, can no longer be applied for by new applicants.
Long-Covid Benefits Timebomb
With many thanks to Benefits And Work.
The DWP is sitting on a Long-Covid benefits timebomb which may be about to explode, if statistics from the ONS and the DWP’s own figures are to be believed. Hundreds of thousands of people are now potentially eligible for PIP and other benefits, as a result of developing the condition.
Figures released by the ONS last week stated that:
962,000 people were experiencing symptoms of Long-Covid that had lasted more than four weeks.
385,000 people who were still experiencing symptoms first had (or suspected they had) COVID-19 at least one year previously.
Symptoms adversely affected the day-to-day activities of 634,000 people (65.9% of those with self-reported Long-Covid), with 178,000 (18.5%) reporting that their ability to undertake their day-to-day activities had been “limited a lot”.
Fatigue was the most common symptom reported as part of individuals’ experience of Long-Covid (535,000 people), followed by shortness of breath (397,000), muscle ache (309,000), and difficulty concentrating (295,000).
Anyone familiar with PIP qualifying criteria will recognise that may of these symptoms are extremely common grounds for eligibility for PIP.
Someone experiencing fatigue, shortness of breath and muscle ache may have difficulties with many PIP point scoring activities, such as washing and bathing, dressing and undressing and moving around.
Difficulty concentrating may well affect activities including preparing food, reading, making budgeting decisions and planning and following journeys.
The fact that 178,000 people are still experiencing symptoms after a year suggests that it is now clear that Long-Covid is a condition which will often meet the 3 month qualifying period and the 9 month prospective test for PIP.
According to a recent article in Nature, scientists do not yet know whether vaccines prevent Long-Covid and whether vaccinations for people who already have the condition will make it better or worse.
The article also suggested that there is no link between how severe the initial episode of Covid is and the severity of Long-Covid, in those who go on to develop the condition.
It also highlights the similarities between Long-Covid and ME/CFS, which is often linked to viral infections and is the basis of many, often bitterly contested, PIP claims.
Scientists cited by Nature found an even wider range of symptoms than the ONS study, including physical impairments, mental-health difficulties such as anxiety, and cognitive impairments in areas such as memory and language.
All this means that the current rapid increase in infection rates could lead to many thousands more people suffering a debilitating and long-term condition that could give rise to entitlement to benefits.
It will not just be PIP that people with these symptoms may be eligible for, income replacement benefits such as employment and support allowance and universal credit are also relevant.
But it is PIP, which is not means-tested, that will be concerning the DWP the most.
According to the most recent PIP statistics, released last month and covering the quarter to April 2021, new PIP claims have reached an all-time record high.
Reports of changes of circumstances are also at a record high. It is likely that Long-Covid will exacerbate some symptoms for people who already have another health condition, leading them to report a change of circumstances.
This rise is unlikely to simply be the result of things getting back to normal as the country opens up again. PIP claims were already running 5% higher than the previous year by January of this year and changes of circumstances were 18% higher.
So, the continued rise is likely to be due to other factors. The lack of availability of many planned and routine treatments, meaning that people’s conditions worsen, is probably one.
But the appearance of Long-Covid and people’s realisation that they may not get well for a very long time, if at all, is undoubtedly an important part of the picture.
And with infection rates on the rise again, the number of people who develop Long-Covid is likely to be rapidly increasing too.
Expect to see a new PIP battleground opening up if, as seems quite possible, the DWP try to refuse claims on the grounds that the condition does not meet the 9 months prospective test, in spite of all the evidence that for hundreds of people it will.
More than 70% of Channel 4’s presenting team for the Paralympic Games will be disabled, the broadcaster has pledged.
Presenters for the event, which takes place in Tokyo in August and September, will include TV host and former basketball player Ade Adepitan.
He’ll be joined by disability advocate Sophie Morgan, ex-rugby player Ed Jackson and Strictly star JJ Chalmers.
Channel 4 said it would be the largest number of disabled presenters ever seen on UK TV.
Director of programmes Ian Katz said the broadcaster had a long track record of “bringing a global audience to the Paralympic Games and for shifting perceptions of disabled people”.
Non-disabled presenters Lee McKenzie and Vick Hope will also report from Japan, while Clare Balding will present live coverage from a studio in Leeds, and Steph McGovern will head a daily breakfast show alongside Paralympic cyclist and former Royal Marine Arthur Williams.
Elsewhere, Adam Hills, Alex Brooker and Josh Widdicombe will host The Last Leg daily and will be joined by comedian Rosie Jones, who has cerebral palsy, reporting from Tokyo. The coverage will also feature pundits including 11-time Paralympic gold medal winner Dame Tanni Grey-Thompson.
Ten years ago, director Matt Ogens was shooting an ad campaign involving high school football teams. One of them was from Maryland School for the Deaf. Ogens was already aware of the school – he grew up within 30 miles of the place and had had a deaf best friend since he was eight years old – and he stayed in touch in his directorial capacity for the next decade, feeling that “there was a bigger story to tell”.
The result was shot last year, pre-pandemic, and arrives on Netflix in the form of Audible, a 38-minute documentary about the team’s final semester. It starts with the brutal loss of a game that breaks a 16-season winning streak, taking in the ordinary trials and tribulations of adolescence, plus some of the particular challenges of preparing to step out of the deaf community to face adult life in the hearing world. The soundtrack fades in and out, blurring and unblurring to reflect what the players themselves hear of it, and keeps in all the advertent and inadvertent noises the students make as they communicate in American Sign Language (ASL). It is also set against the backdrop of grief for teammate Teddy Webster, lost to suicide. It finishes with the homecoming game, where the team meet with either triumph or disaster – I shall not spoil the ending for you.Advertisementhttps://7cfcc059735d1f81710abd5788920612.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html
It is a lot of ground to cover in under 40 minutes, and there are many points at which you wonder whether Ogens might have been better off waiting another few years in order to make a longer, weightier film that had time to give all aspects of the team’s complicated story their due. At its current length, it skims so lightly over so much that it feels more like an extended commercial than a piece of factual programming – especially given its numerous glossy sequences out on the field, following the games that bookend the show and the training sessions at dusk and dawn, interspersed with moody pre- and post-match locker-room moments, and jazzily shot pep talks. Such elements are pleasant enough, but unspecific and unworthy of the amount of time they take up.
However, viewed as a small-scale, aurally immersive introduction to a world largely unknown to the general public , it works beautifully. The nuanced physicality of ASL – generally flattened into mere hand gestures when we see it in film and television dramas – is conveyed, evoking much more strongly and accurately than usual the sense of deaf culture as one that stands alongside any other, rather than as the subsection of the “disabled community” it is often thought to be. (Please let us reconvene to discuss the term “disabled community” at a later date. A mere TV review cannot, alas, parse everything as fully as I would like.)
Audible centres largely around one player, Amaree McKenstry-Hall, who lost his hearing as a toddler after contracting meningitis. “I can’t hear anything,” he explains to camera in his bedroom. “Cheering, fans yelling … I feel their vibrations. I feel their footsteps when they run – the boom, boom, boom.” He is the only deaf member of his family, and has a cochlear implant that he only uses to listen to music, though he doesn’t hear the lyrics. His father left the family at the same time as Amaree lost his hearing. His father says now that he was terrified. “I walked out … immaturely, very foolishly, and later regretted it.” Now he has found God, and is working hard to rebuild his relationship with Amaree. The scenes where they cultivate the tender new shoots of affection between them are some of the most touching in the film.
You do long, however, to hear more about what life is like growing up in a family not fluent in your language, and to have some wider context regarding the impact of deprivation on individuals and families already not competing on – if you’ll pardon the pun – a level playing field. The film could also have more closely considered the heightened meaning sport has for deaf students. Above all, you wish for more time to have been spent on the causes and effects (especially on his boyfriend, Jalen, who gets a sparse few scenes) of Teddy’s suicide.
Ogens has said that he hopes the film will be a springboard to bigger things, and by the end of this rather slight but moving and evocative film, you can only hope that it will be so. I look forward to it.
Della has a rare genetic condition called Bainbridge-Ropers Syndrome which affects her ability to speak.
Her brother, Archer, wanted to help his sister communicate – and didn’t think it was fair to rely on expensive communication apps.
Aged just 16, Archer decided to develop one himself, for free and accessible to all.
A woman who swims regularly in the Hampstead ponds is taking legal action against the City of London Corporation, claiming that the new charging regime discriminates against disabled people.
Christina Efthimiou, who is disabled and receives disability-related benefits, has swum at the ladies’ pond for four years. She is a member of the Kenwood Ladies’ Pond Association (KLPA), which is supporting her in seeking a judicial review against the Corporation.
Efthimiou, 59, says that access to the ponds is an essential part of managing disability for her and many others, and that the value of cold-water swimming for physical and mental health is widely recognised.
“The benefits to me are immense,” she said. “If I have to stop using the ponds for my regular exercise I don’t know what I will be able to do instead. I and many others will be priced out by the charges, which will change the ponds to a privilege for the better off.”
Mary Powell, vice-chair of the KLPA, said the ladies’ pond had historically provided a sanctuary for women and girls, including those with disabilities, victims of violence and abuse, and those from faith groups that demand modesty, but the new charging system was proving exclusionary for many people. While the legal case deals expressly with the disproportionate effects on disabled people, Powell said access had also been affected for other groups.Advertisementhttps://36990ca60df06c1790dabce0e42c7299.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html
“There are limitations to the free swims offered for over-60s before 9.30am, for example, particularly for elderly members or those with fluctuating health conditions who can’t get to the ponds that early or need to be accompanied,” she said. “The times also clash with when Oyster 60+ or freedom passes can be used, which cancels out the benefit of a free swim.”
Up until 2005 it was free to swim in the Hampstead Heath bathing ponds. Despite fierce opposition from the local community, the City of London Corporation (CoLC), which has run the world-famous ponds since 1989, implemented a charging regime, though this was self-policed, so people who couldn’t afford to pay still had access.
After a review in January last year, the CoLC introduced mandatory fees for the first time in the ponds’ history. The KLPA said this was in spite of strong support from the swimming associations for adopting a system where income could be increased without excluding anyone unable to pay.
But the Corporation opted for increased mandatory charges, which included a doubling of prices for adults and a 140% rise for concessions, which it insists was necessary to sustainably fund upkeep of the ponds.
In February 2021, the CoLC increased rates again. While non-concessionary rates were increased in line with inflation at 1.3%, the cost of a six-month pass for those eligible for concessions, including disabled people on benefits, was bumped by 21.5% to £40.11 and a 12-month pass by 15.1% to £75.97.
The CoLC’s refusal to allow for payment in instalments and make it easier to pay cash were further barriers for disadvantaged swimmers, Powell said.
In the legal case, Efthimiou argues that the new charging regime, which took effect on 1 April, disproportionately affects people with disabilities and that the City of London has breached its duty to make reasonable adjustments; has discriminated against her and other disabled people contrary to section 19 of the Equality Act; and has breached its duties under article 14 of the European convention on human rights read with article 8.
She’s asking the court to repeal the Corporation’s decision to implement the increased charges on the grounds that the regime amounts to unlawful discrimination in respect of disabled people.
Kate Egerton, a solicitor at the law firm Leigh Day, said: “In our view, the City of London has failed to engage with the impact its charging regime is having on disabled swimmers and to comply with its equality duties to disabled swimmers who rely on the ponds to manage their health.
“The current charging regime demonstrates a total lack of understanding of the financial position of those who survive on benefits and the significant physical and psychological benefits to disabled people of swimming at the ponds.”
A spokesperson for the CoLC said: “The Hampstead Heath charity offers a 40% swimming discount to disabled people, and a season ticket at the bathing ponds brings the cost of swimming down to as little as £1.46 per week.
“We subsidised swimming at the bathing ponds by nearly £600,000 in 2020/21 and we offer a comprehensive support scheme, including free morning swims for under-16s and over-60s. Concessions apply to disabled people and those in receipt of state benefits.
“Swimming charges are reinvested to ensure that affordable, safe and sustainable access to outdoor swimming is available to as many people as possible for generations to come.”
Thousands of deaf and disabled people across the UK have told the BBC of the devastating impact the pandemic has had on their lives.
Most said their disability had worsened and more than 2,400 said routine, often vital, medical appointments had been cancelled.
More than 3,300 people took part in the research carried out by the BBC.
Disability charity Scope said the findings confirmed that disabled people’s needs “had been forgotten”.
The findings paint, for the first time, a comprehensive picture of a hidden fallout of Covid-19.
Nearly 100 more disabled people also contacted the BBC wanting to share their stories. Many of them had experienced huge physical and mental decline since March 2020. Impact of Covid on disabled people
- 2,604 said mental health had got worse
- 2,427disability had deteriorated
- 683had seen all of their appointments cancelled/unable to attend
- 241had not left house at all
BBC research: 3,351 disabled people questioned
There were young people with autism who had attempted suicide because they could no longer cope with drastic changes, others were isolated and alone, their support networks gone or hours of care cut.
Access to healthcare was a huge issue – one woman was told not to go to hospital if she contracted Covid as this might put her more at risk.
A family told how care had been almost stopped for their disabled daughter, while her father, who had had Covid, was offered a range of treatments.
Fourteen-year-old Josselin has a rare genetic condition, which means she has hearing loss, a vision impairment, can’t walk or talk and is fed through a tube.
Her family, who live in Wiltshire, have a vital network of services they rely on to keep her well – physiotherapy, speech and language therapy, occupational therapy, respite care. All of that stopped in March 2020.
“Josselin really struggled. She just shutdown,” says her mother Karen Tilley. “I never thought [she] would suffer from depression like that.
“After about a month she started pulling her hair out and picking at her skin, she had cuts all over her arms.”
‘Lack of support’
Josselin was prescribed anti-depressants and anti-psychotic medication. She was also given prescription drugs like diazepam to cope with the pain she was having in her hips and her spine because of a lack of physiotherapy.
“Suddenly she was put on all these new medications. There was just no support for us at all – it was horrendous.”
At the beginning of this year, Josselin’s dad Lee, 43, caught Covid-19. He spent five weeks on a ventilator in intensive care.
Lee is back home making small and slow steps to, the family hope, a full recovery. But the difference between the support he is offered and the treatment his daughter receives is stark.
His calendar is full of medical appointments. He has an occupational therapist, a physiotherapist, and he has been sent equipment to help him regain his mobility.
But for Josselin, her cochlear implant, which needs retuning every few months, has not been checked for nearly two years. Her last eye test was over the phone, she’s not had any face-to-face physiotherapy since March 2020, and her walking frame no longer fits.
“It feels like it’s because she’s disabled so it’s not worth bothering with,” says Karen. “She’s not ever going to walk and talk so they just don’t bother with her.”
All the people we have spent time with over the past few months have shared their own, heart-breaking stories. Considering everything they have had thrown at them this past year, they have managed to get through it the best they can, almost entirely on their own.
But what really hit me is that none of them kept a “who had it worse during Covid” scorecard.
Yes, they all pretty much described themselves in one way or another as “the forgotten ones”, but they were all incredibly measured and understanding of the fact that the pandemic has touched us all in very different ways, disabled or not.
Freelance journalist Raya Al Jadir, 43, uses a ventilator. She was told by her specialist doctors that if she caught Covid-19, she should not go to hospital because the level of care she would need could not be guaranteed.
She was also warned that it was unlikely that she would be considered for life support.
“It made me feel alone and isolated. If I did end up in hospital and I was really sick – who was going to fight for me?”
Raya was one of the hundreds of disabled people who told the BBC that they would avoid going to hospital during the pandemic.
From March 2020 to May 2021, Raya did not leave her house for fear of catching Covid.
Shielding may have officially ended but there are still many disabled people living an isolated existence. Nearly 2,000 told the BBC that they had left their house on only a few occasions since the start of the pandemic, with almost 250 saying they had not ventured outside since March 2020.
At the end of May, Raya finally left her London flat.
“Breathing the air, seeing the clouds made me feel part of the world again.
“As a disabled person, I feel like the weakest link in society. And now, because of Covid-19, no-one knows what to do with the weakest link.
“I don’t think my life will ever return to what it was before March 2020.”
‘Never happen again’
One of the biggest disability charities in the UK, Scope, has said the BBC’s findings “confirm the government’s failure to provide support for disabled people throughout the pandemic.”
“Millions spent months shielding, having to battle for basic support like healthcare, supermarket deliveries, financial support and social care,” said James Taylor, executive director at disability equality charity Scope. “Horrifying reports of DNRs [do-not-resuscitate orders] being placed on people without their consent left many fearing they’d not get treatment if they caught the virus.
The government “must take bold action now to put disabled people at the heart of the recovery, and end the growing inequality”.
The Department of Health and Social Care said it recognised the pandemic has been “incredibly difficult” for disabled people.
“Among other support, we have invested £2.4m to help charities offer vital projects to improve disabled people’s physical and mental wellbeing.
“The government has provided a range of help for disabled people throughout this period and through our forthcoming National Disability Strategy we are going to go even further in addressing issues that disabled people say affect them the most.”
Information and support: If you or someone you know needs support for issues about emotional distress, these organisations may be able to help.
Hollyoaks spoilers follow from Tuesday’s E4 first look episode (June 29).
Hollyoaks star Amy Conachan has left the soap after a five-year stint as Courtney Campbell.
Fans saw Courtney’s final scenes in Tuesday’s E4 episode, as she departed the village to accept her dream job as a headteacher in a school in Scotland.
Digital Spy recently caught up with Amy for an exclusive chat about her departure from Hollyoaks.
How are you feeling now that your time on Hollyoaks has come to an end?
“It’s such a strange one, because everything gradually calmed down. When I was filming, I’d think: ‘Okay, I’ve got two weeks left. I’ve got one week left. I’ve got two days left…’ Then it was my last day, so it gradually just went away.
“Then when you’re out of it, you’re still on screen, so it comes in stages. Coming to the end of filming, I was a bit of a woman on the edge – so emotional about it!
“I’ve been fine since then because I’m on screen, but now I feel a bit emotional again. I was catching up on episodes last night and thought: ‘My God, this is it. She’s only going to be on a couple more episodes and that’s it.’
“It’s strange when it’s such a big part of your life for five years and then it’s just gone. It’s a funny one to get your head around.”
Was it your choice to leave?
“I suppose it was my choice to leave, but it was more that I wanted to go out on a high. I’d been on the show for five years and it felt like a nice, round number. Advertisement – Continue Reading Below
“I hadn’t done a whole lot before I was on Hollyoaks. I was only at drama school for a year and there’s loads of things that I want to do. The training that I got at Hollyoaks was probably the best job that I could have done so early in my career.
“Even though it was me that said it was maybe the right time to do something else, it was still very much a hard decision for me because Hollyoaks was just the best job ever.
“It’s a one-of-a-kind opportunity when you’re an actor, to go to the same place every day, see the same people and play the same character. But it just felt like the right time for me to leave… although I’ll let you know in about six weeks’ time if I still feel the same way!”
How long has Courtney’s exit been in the pipeline for? Was it something you spoke to Bryan Kirkwood about before he left as producer last year?
“It has been talked about for a while. I’d discussed it with Bryan and we wanted it to be a nice ending for Courtney, but the exact details of how that would happen all came at a later date.
“Obviously a lot has happened in the past year. When I was first thinking about this, there was no pandemic! So things did change along the way, but it’s definitely been in the pipeline for a while.”
Did you have any input into Courtney’s exit storyline or did you leave it to the writers?
“I definitely left it to them, but I was quite adamant that I didn’t want Courtney to be running away from anything. When I first got the scripts through for the storyline with Courtney and Sid, I didn’t really want her to be leaving because something bad had happened with them.
“That wasn’t only because I didn’t want Courtney to leave on a bad note, but I also really loved that relationship between Courtney and Sid and I didn’t want them to end things on a sour note either. I just wanted Courtney to leave the village to further herself, rather than running away from anything. Advertisement – Continue Reading Below
“Also, I really wanted the door to be left open. I didn’t want Courtney to die! It’s such a nice thing to have that door open and maybe one day she might come back.”
We saw Sid develop inappropriate feelings for Courtney. Was that storyline a challenge?
“When you do a storyline like that, it’s hard to know where to pitch it. I had a lot of personal feelings around it, not only over the character but also my relationship with Billy [Price, who plays Sid] as two actors and two friends.
“Sometimes the writing can go in a different direction than you want it to as the actor, just because you want everything to be lovely and to go to plan, like I’m sure the fans do. I saw a lot of comments saying: ‘No, don’t do it!’
“But I think once me and Billy realised where the storyline was going, we relaxed into it a bit more. At first I thought: ‘Oh my God, Courtney, don’t do it. Stick to your true self and be that sensible person that you’ve always been.’
“It was actually so lovely that so many of my final scenes were with Billy. It was that tightrope of the teacher wanting to be there for someone but not too much, because she knew where it could go.
“It was a challenge for me to know where to place that, but I think we got there in the end and I enjoyed playing that.”
What was your final day on set like? Had the rules changed by that point, allowing you to spend some time with the cast?
“Things had changed a little bit on the outside. At work we still had all of our restrictions, which was a wee bit of a shame, because it meant that my entire final year on the show was restricted by COVID protocols. But outside in the world, I was able to see friends here and there in small groups.
“That was so nice, because there are amazing people at Hollyoaks who are going to be my friends for the rest of my life. To just end it and go back to Glasgow without seeing anybody would have been such a shame.”
Who do you see yourself keeping in touch with?
“Definitely Jessamy [Stoddart, who plays Liberty]. She’ll be one of my best friends forever. We still talk most days, so I’m not going anywhere and she’s stuck with me, unfortunately!
“Nadine [Mulkerrin, who plays Cleo] and Rory [Douglas-Speed, who plays Joel] are my go-to when I need somewhere to stay in Liverpool, they’re the best.
“I’m also still very much in touch with Luke [Jerdy, who played Jesse] and Daisy [Wood-Davis, who played Kim]. They’re my really good friends.”
What are your future plans for your career?
“I just hope that it carries on with the trajectory that it’s on. I’ve been so lucky. Even before I’d left drama school, I’d worked in theatre in Scotland and done some amazing projects.
“I look at my friends who I went to drama school with and it’s not necessarily worked out as well for them, just because that’s the industry. So I realise how lucky I am after doing this show for five years.
“I do have a few projects that I’ve done already and that are coming up, so it seems like it’s all going to be okay. I’m a hard worker and very passionate about it, so I’m ready to do the work.”
Are you proud of what Courtney’s role in Hollyoaks meant for disability representation? The character never seemed to be defined by her disability.
“I think that is just incredible. Hats off to Hollyoaks for doing that. Coming into the show, I was adamant that this was the type of character I wanted to play.
“I was at the point where I’d played a lot of parts where they’d been looking for someone in a wheelchair, or wanted to tell a story with someone about them being in a wheelchair.
“I didn’t really want to do that anymore because I had seen that. I think we’ve all seen that over and over again. It’s a bit boring and not representative of what it’s like to live with a disability.
“I wasn’t faced with any argument. Hollyoaks were on board with that and it was never in their mind that they wanted to tell a story about a girl in a wheelchair. Courtney just happened to be in a wheelchair, but she was going to do the same fun, soapy stuff as everybody else.
“Other productions, writers and directors could learn from Hollyoaks in that manner. It’s been a privilege for me to be able to champion that.”
Were you sad that Leela wasn’t around for Courtney’s exit?
“Yeah, when Kirsty left I already knew that I was going. She said to me: ‘Oh my God, this is the last scene that we’ll ever do together.’ It was so far in advance that it didn’t feel real.
“Kirsty messaged me when I finished. I thought it was such a shame because Leela was a massive part of why Courtney was there in the first place, but obviously there was an incredible reason why Kirsty wasn’t there and I’m so happy for her.
“Courtney’s final scenes were with Ste and Peri at the Lomaxes’, so it has still come full circle. Leela was very much there in spirit.”
What were your Hollyoaks highlights?
“It has to be when we went to Spain. It was the most fun week ever and the storyline was just incredible. I never thought I’d do a storyline where I was smuggling drugs in my wheelchair and trying to get them through an international border! Getting to go to Spain to do it was the cherry on the cake.”
How do you hope fans remember Courtney?
“I want them to remember Courtney as someone who added a lot to the show and I hope they remember some of the storylines in years to come.
“Courtney was a fierce, feisty Scottish girl who came in and ruffled a few feathers and also supported some of their favourite characters.”
Hollyoaks airs weeknights at 6.30pm on Channel 4, with first look screenings at 7pm on E4.
UK Government partners with disability charity to set standards for electric vehicle chargepoints
A press release:
- Standards will provide industry with guidance on how to make individual chargepoints more accessible by summer 2022
- Guidance will consider aspects such as kerb height, adequate space between bollards and chargepoints being of a height suitable for wheelchair users
- Partnership with British Standards Institute (BSI) and Motability will see chargepoints that are accessible for all as we accelerate towards a zero-emission future
The UK is accelerating towards a more inclusive, reliable electric vehicle (EV) charging network, as the Government and charity sector come together to set accessibility standards, Transport Minister Rachel Maclean has announced today (30 June).
In partnership with national disability charity Motability, the Department for Transport has commissioned the British Standards Institute (BSI) to develop accessibility standards for EV chargepoints across the country. These standards will provide industry with guidance and drivers with a new clear definition of ‘fully accessible’, ‘partially accessible’ and ‘not accessible’ public EV chargepoints.
The design of public chargepoints is already carefully considered by operators, however consistent standards are crucial for drivers to easily identify which chargepoints are suitable for their needs. This could range from adequate space between bollards, charging units being of a height suitable for wheelchair users, size of the parking bay and the kerb height.
Transport Minister Rachel Maclean said:
“With sales of EVs increasing and the Government’s net zero ambitions accelerating, I want to make it as easy as possible for EV drivers to charge up their vehicles at public chargepoints right across the UK, regardless of their mobility.
“We are taking action to provide accessibility guidance to both operators and drivers, to make sure that the transition to zero-emission driving will benefit everyone in society as we build back better.”
Minister for Disabled People Justin Tomlinson said:
“As we Build Back Greener this Government is ensuring disabled people are at the heart of our plans.
“As electric vehicles become more popular it is imperative that disabled people have the same opportunities to access them as everyone else. The new accessibility standards for chargepoints will help make this a reality.”
The Office for Zero Emission Vehicles (OZEV), Motability and BSI will be working with industry stakeholders including EV chargepoint operators, disability charities and innovators to ensure that the consumer can find the right chargepoints for their needs.
Barry Le Grys MBE, Chief Executive Officer at Motability, said:
“There is a risk that disabled people are left behind as the UK’s transition to electric vehicles approaches, and Motability wants to ensure that this does not happen. We welcome the interest from Government in our research on electric vehicle charging and accessibility and we are excited about our partnership with the Office of Zero Emissions Vehicles (OZEV) to further this work. We look forward to working together to create world-leading accessibility standards and to support the UK’s commitment to achieving zero emissions. Motability looks forward to a future where electric vehicle charging is inclusive for all.”
Motability is also working with Designability, a charity which creates products to enable disabled people to live with greater independence, to engage with disabled drivers and identify their requirements for accessible charging.
Catharine Brown, Chief Executive at Designability, said:
“Accessible electric vehicle charging is an exciting area of innovation for government, industry, and the charity sector. Designability welcomes this important drive towards standards that will make sure the needs of disabled people are taken into account as this new technology becomes mainstream. We are delighted to be working with Motability to create cutting-edge design solutions. Our expertise in working with disabled people makes us perfectly placed to find solutions to these every day challenges – which will only increase as more people want to drive electric cars. To date over 1,000 disabled drivers have volunteered to feedback to Motability and Designability on how we can make electric vehicle charging accessible for all.”
Matthew Campbell-Hill, a former Team GB Wheelchair Athlete and member of the Electric Vehicle Association (EVA) England, said:
“As an EV owner and motor vehicle enthusiast who knows how transformative inclusive infrastructure can be, I’m excited to learn of this cross-sector partnership between charity and government. I’ve experienced first-hand just how challenging it can be to use a chargepoint that hasn’t been built with disabled people in mind, and this work will ensure electric vehicle charging is accessible for all. I can’t wait to see innovation and change in this space.”
To ensure all interested stakeholders have the opportunity to come together and inform the standards, Motability will be holding a series of workshops on accessibility and electric vehicle charging in August. If you are a charity working with disabled people, or people with long-term health conditions and would like to know more about participating, contact innovation@motability.co.uk.
Campaigners Fight To Save Human Rights Act
If anyone had told me that my family would ever need disability benefits, legal aid or the Human Rights Act, I wouldn’t have believed them. I am sharing my story because my fear is that when the next family comes to need these same things, they will not be there.
Cameron was the youngest of our four wonderful children. He was born in 2007, and it quickly became clear he was very ill. He had to be rushed to Alder Hey children’s hospital for emergency surgery when he was only three days old. He was diagnosed with cystic fibrosis, then at 18 months we learned that he had Duchenne muscular dystrophy too. I remember the consultant telling us with tears in his eyes that Duchenne was a severely life-limiting condition and my wife and I replying in unison that it would not limit Cameron’s life.
You see, we had already begged him to fight when he was three days old and promised him that if he could not live long, then we would do all we could to help him live fast. He took us at our word, and lived a life of love and laughter, pedal to the metal and without fear, for five and a quarter magical years, despite all that was thrown at him.
This coming Saturday would have been his 14th birthday, a day we celebrate his life and the happiness of his childhood despite extraordinary challenges. Two years after Cameron’s death, we won a landmark appeal that allowed us, and other parents in our position, to continue claiming disability living allowance while caring for Cameron in hospital – after those benefits were taken away from us. This year is also one that brings me a great deal of trepidation about the direction of travel for justice, rights and protections in this country.I am saddened that the government now appears to be seeking to further reduce protections for all of us by watering down the Human Rights Act – the legislation on which we based our case – via the current review being conducted by a former judge. The Human Rights Act is not just one of the ways for UK citizens to challenge government decisions we deem to be unfair: it is really the only way.That should scare everyone in this country. Of course, I hope no one else finds themselves in the position my family and I found ourselves in, but it could be any one of us.
The interplay between Cameron’s conditions and a blood-clotting disorder they caused was devastating, and my wife and I had to give up work to care for him during long, repeated stays in hospital, through surgery after surgery, struggling to get him home again with his sister and brothers.Advertisement
We did not claim any benefits for Cameron until we had spent all of our savings and sold every last asset. Then, we reluctantly accepted that we had reached the end of the line and had to ask the state for help. We count ourselves lucky to this day that we live in a country that allowed us to effectively retire during Cameron’s life to do our best for him and his siblings. A country where generations of us selflessly pay in to help others, without thought for what and when we may ever get back.
In July 2010 Cameron was again rushed to Alder Hey with an intestinal blockage and this time he lost all but about 90cm of his intestines, well below the “magic metre” needed for normal nutrition. From that day he had to be fed intravenously and get used to having twin stomas and a stoma bag, a central line and gastric tube. In total, we spent 62 weeks in Alder Hey, still far less than many other families, but our costs effectively doubled as we tried to maintain our home and a home-away-from-home for Cam in hospital.
It came as a very unpleasant shock to have Cam’s benefits stopped after three months on the basis that “he had had long enough to get used to being in hospital and the state could no longer afford to pay for the same thing twice”. This, the “84-day rule”, had been introduced to the disability living allowance regulations in 1991. This was an unimaginable blow. We were being cut off just when we needed support most, and it was so obviously wrong. Despite everything else we had going on, my wife and I decided we had to fight the decision. Not only for ourselves, but for other families we had come to know intimately; families who, like us, spent long days, nights, weeks and months caring for their child in hospital.
Thanks to legal aid and the Human Rights Act we were finally able, after four and a half long years, to explain to the supreme court why the government had been wrong: that there was no overlapping provision between disability living allowance and NHS care; that the NHS has never provided for “all children’s disability needs in hospital” and indeed that parents faced being reported for neglect if they did not accompany their children in hospital at all times without exceptional reasons, and that this had all been true since the Platt report of 1959.
In 2012 the government passed the Legal Aid, Sentencing and Punishment of Offenders Act that made it impossible for anyone to bring a case like Cam’s again (the public interest test for legal aid is effectively insurmountable where the Human Rights Act is engaged), as well as the current assault on the act that is under way. There’s every reason for all of us to want to make sure the Human Rights Act doesn’t lose any of its power – and every reason to worry about powerful people who want it to.
Ryan Zaman
When he was five years old, Ryan Zaman walked in a fashion show at his primary school. The catwalk was made from gym mats laid out in a T, and the front row was populated not by Wintours and Kardashians but by rapt parents on tiny chairs. Zaman’s mum shot a video and it should be issued with an “extreme cuteness” advisory. At the end, a teacher with a microphone buttonholes Zaman and asks, “Are you famous?”
“Yeah,” he replies.
The audience laughs. “I thought you were,” says the teacher. “Everybody went ‘wit-woo’ when you came out. Do you like modelling?”
“Yeah,” Zaman says, chewing on his thumb nervily, but also clearly not totally unhappy with being the centre of attention.
The fact that Zaman, now 25, is a star model, appearing in postbox-red lipstick and a gold laurel wreath on the front of the first issue of Perfect magazine – one of the other covers is Kate Moss – could be seen as predestined then. But the truth is that Zaman never really believed he would make it in fashion, and he still pinches himself that it seems to be happening for him. He was too short: 5ft 7in. He wasn’t ripped. His legs were skinny. He didn’t consider himself especially attractive. Until January this year, Zaman still worked nine-to-five in the civil service, writing briefs for ministers on international trade policy.
But more than anything, he didn’t see anyone like him becoming a model. Zaman has cerebral palsy: he was born three months premature and his first weeks of life were spent hooked up to an incubator. Doctors weren’t sure if he would ever walk and, when he was 15, both of his knees were broken in surgery in order to relieve the tension in his hamstrings. Moreover, the fashion world, with its strict edicts on human beauty, has not exactly been progressive when it comes to disability. Despite making up 22% of the UK population, disabled people have rarely appeared in fashion magazines or in advertising campaigns. Clothes are not designed with them in mind. Zaman wryly notes that there are more clothing ranges for dogs than for disabled people.
Now that he has got his foot in the door, he wants to change that. Not so long ago, models were enigmatic: they were seen but rarely heard. Zaman feels he has a responsibility to make it easier for those who follow him. Alongside modelling, he hosts a podcast, The Right Foot Forward, where he speaks to a guest about disability and inclusion in the fashion industry. An early conversation was with Jillian Mercado, who has muscular dystrophy and was one of the first people with a physical disability to be the face of a global fashion campaign, when Diesel selected her in 2014. The Right Foot Forward is also a website, and Zaman has begun producing shoots with disabled people in front of and behind the camera.
Zaman is in many ways an unlikely activist. Until very recently – even the middle of last year – he was deeply uncomfortable talking about his disability. When he first met his current boyfriend a couple of years ago, he didn’t tell him about his condition for a month (his boyfriend had a friend with cerebral palsy, so knew already). But Zaman has been quick to find a powerful and inspiring voice.
“The word ‘diversity’ gets thrown around quite a lot to the point where it’s now meaningless,” says Zaman. “I see it as quite a face-value word, or a face-value ideology. Like, ‘Let’s throw a black or brown person in there, let’s throw an Asian person, let’s throw a person in a wheelchair in there and then we’re diverse.’ Which is quite tokenistic and we all know how tokenism is problematic.
“So part of what I’m doing with the podcast and the website is building my own networks to also try to help other people with the connections I have,” he goes on. “And that’s where it moves from being a diverse thing to an inclusion thing.”
I meet Zaman in Highbury Fields, not far from where he lives in north London, and we walk round the neighbourhood for an hour and a half, as he explains how someone jumps from a desk job on Whitehall to the covers of edgy magazines. It’s true, he’s not that tall, and he’s dressed inconspicuously in a blue T-shirt and skater shoes, but it’s not hard to see why he’s in demand as a model. He has full lips and ash-blonde hair; his blue eyes are pale and soulful, and when he smiles it’s so joyous, like getting an injection of vitamin D and serotonin. Fashion editors have told Zaman they like him because he’s “versatile”, though he’s not totally sure what that means.
He grew up in Stockport, just down from Manchester. His parents only knew he had cerebral palsy when he was three, after they took him to doctors because he was struggling to walk. Their marriage broke up when Zaman was 10 and, soon after, his mum was diagnosed with breast cancer. He became her primary carer, and only when she had the all-clear did he have the surgery he needed on his hamstrings. Then it was straight into learning to walk again – twice, first with locked-in splints, then without – and GCSEs. “I didn’t have time to think about being a dickhead, really,” says Zaman. “So then I became an idiot in my early 20s and I think a lot of that built-up frustration came out when I went to uni.”
His degree at Leicester University was in American studies, and Zaman also had his first experience of modelling. A friend roped him into a shoot with his cousin, who was a photographer. Later, they went to Romania to do a fashion story for 10 Magazine. “I got to wear some nice clothes and get some dodgy haircuts,” Zaman recalls. “Me and my mate were just like, ‘Oh, this is a bit of a jolly during the Easter holidays before we do our exams.’”
Zaman thought no more about fashion until the first lockdown. His work for the civil service continued remotely, but his partner, photographer Conor Clinch, found that the jobs dried up instantly. The weather was unseasonably warm and, desperate for an escape from their one-bed flat, Clinch convinced Zaman to go to a local park to take some pictures. They borrowed some clothes from a friend who works for Hugo Boss and, with some clever post-production, Clinch managed to make “a grotty pond in a park” look like the desert, complete with cacti. The fashion magazine Wonderland liked the photographs and ran them.
Then last summer, Zaman and Clinch moved to a new flat and – in a not very high-fashion detail – they had to vacate it for two weeks when they found the kitchen had damp. Deciding they might as well go away, they picked Italy, and Clinch pitched the idea of a short film to Love, the influential fashion magazine. At first, Clinch imagined a three-minute short, showing Zaman driving around Puglia in a 1980 Maserati, but it quickly became something more personal. The final cut was just over nine minutes, with a voiceover from Zaman about his experiences with cerebral palsy, intercut with home videos from his youth, such as the fashion show mentioned above and heartbreaking footage of him as a baby on a ventilator in the hospital, his tiny chest heaving violently up and down, desperate for air.
Clinch’s film is beautiful and is an ideal showcase for Zaman as a model and as a compelling personality. It also led to an introduction to Katie Grand, the stylist and editor who had not long left Love, which she founded in 2009, to start new venture Perfect. As a tastemaker to have in your corner, Grand is as good as it gets and she has fully embraced Zaman as a model and advocate, both in the new magazine and on social media.
“Ryan, it goes without saying, is an exceptional human,” says Grand. “He’s smart, articulate, thoughtful and beautiful. He has a way of discussing his cerebral palsy that puts able-bodied people at ease: there is no stigma or discomfort attached in the discussion. The fact that it even becomes an open and easy discussion is seismic.”
It’s frequently hilarious to hear Zaman talk about his experiences as a model. When Grand asked him to shoot the Perfect cover, he said he would, but only after 5pm, when his civil service job finished for the day. On the call sheet, he saw “KM” and had to ask Clinch what it stood for: “Whoa, like, Kate Moss, OK, fine,” says Zaman. “I was sat in the [makeup] chair next to her and I think I was reeling for about a week. I was like, ‘What just happened?’ Katie likes to introduce people and she finds it funny to make people starstruck. Then it’s all just gone from there.”
Grand explains her rationale slightly differently. “The first time I worked with Ryan I felt we hadn’t got him right,” she says. “We were shooting Kate Moss and Gwendoline Christie on an additional day for the same story so I asked Ryan to come back. It was a logistical call but I suppose in the back of my mind I knew the combination of Kate and Gwen would be loud and fun and to have Ryan in the mix created a very special group of people.”
The history of disability in fashion is brief and not that edifying. In the mid-1950s Levi’s made a pair of jeans, from stretch denim and with full-length zippers in the side seams, designed for disabled people. In 1997, Alexander McQueen put out a call to recruit disabled people to wear his designs, which led to “Access-Able”, a 14-page feature shot by Nick Knight in the style magazine Dazed & Confused. Then double-amputee Aimee Mullins, an American athlete, opened McQueen’s spring/summer 1999 runway show in an extraordinary pair of carved wooden prosthetic boots. In recent times, Tommy Hilfiger and Nike, whose Go FlyEase trainers can be put on hands-free, have both dabbled in “adaptive fashion”.
Giles Duley, who was a fashion photographer before becoming a triple amputee while embedded with the US army in Afghanistan in 2011, believes progress is being made, but slowly. “The issue has always been that there’s a sense of it being a novelty at times,” he says. “Whether it be Alexander McQueen wanting an amputee or Nick Knight doing something – which obviously is progress, and it’s good that that’s represented – it’s still always been they wanted an amputee or they wanted somebody with a disability in that image, as opposed to, ‘We want a model that looks great. We picked this guy and oh, it happens that he has a disability.’ That’s a subtle difference for me.”
For Duley, Zaman is indicative of a shift in fashion where we are less interested now in models who are untouchable; instead, we want characters with personality, to whom we can relate. “Ryan’s obviously a really good-looking guy, but he feels very approachable,” says Duley. “So when you see him in his photographs, it feels like somebody you could know: he’d be your really good-looking mate, as opposed to being this David Gandy-type, perfect model that you can’t imagine even meeting. Ryan represents what is exciting about modelling at the moment, which is that the people are cool, but they also have their own style. They have a sense of who they are and that comes across in the pictures.”
Zaman agrees with Duley: in the past, models have sometimes felt “disposable” but that’s changing. “Hopefully, a lot of people aren’t looking for just a model any more,” he says. “They want people to say things, which I think is great.” As for how long that will last, he’s not sure, but right now he’s having a blast. Zaman was especially pleased to be booked for a shoot to advertise the 70th anniversary of Fred Perry. The tennis player also came from Stockport, and the images are set to be used in a new flagship store in Manchester’s Northern Quarter.
“It’s like, ‘Whoa, people from my home town are going to maybe see me in windows in a shop,” says Zaman, his eyes wide. “And also for all those kids and people who never thought I was going to amount to anything…” He laughs and coyly raises his middle finger: “I do get some satisfaction in that.”
The Experience Of A Blind Foster Parent
For a long time I have had problems with my sight: macular degeneration meant that I had no central vision in one eye. Then, one morning in 2013, my other eye – the good one – haemorrhaged. I was told it was permanently damaged and nothing would make it better. I became officially registered as severely sight impaired or blind.
It was a big shock. Little things became so much harder, such as making a cup of tea, as I would get boiling water everywhere. People I know would stop to have a conversation in the street and I wouldn’t know who they were.
I was able to get by, but my biggest fear was that, because I was blind, the local council would stop me being a foster carer. I began fostering children 30 years ago when I was newly divorced and a single mother of three, after spotting an advertisement in the Oldham Chronicle. At the time, I was looking after friends’ children when they were at work, but I liked the idea of helping children who really needed it. I didn’t think the council would want me because I was single, but they didn’t seem to mind.Advertisementhttps://cc27bc9bdea028c579d7787a61c0a16d.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html
It was an arduous application process, but less than an hour after being approved to foster, I had a phone call asking if I would take a five-week-old baby boy. He stayed with us until just before his first birthday, and since then I’ve fostered more than 150 children.
Councils and foster agencies rarely let people with disabilities become foster parents. When I got back home from the eye hospital, I thought they would say I could no longer do it and would take away the children I was looking after. The only foster carer I know who has a disability has MS, but they have a partner to help. I thought they wouldn’t want someone who was both disabled and single, and I was absolutely heartbroken at the thought. I couldn’t stop thinking about what would happen to the children. But someone from the council came to see me and, after asking a lot of questions and carrying out new risk assessments, they said they wanted me to continue.
I’ve lost count of how many children I have fostered since then. Right now, I have a three-week-old baby and a 15-year-old girl. The teenager tries to show me things on her phone, which I can’t see at all, and I have to remind her not to leave things like shoes in the middle of the floor, because when I look down I can’t see anything. Luckily, I haven’t had a bad fall at home yet, but I have tripped when out of the house. I fell over badly in the street a few weeks ago because I didn’t see the kerb. It’s easier with the baby, as long as the clothes don’t have fiddly buttons. I get my twin daughters to come to look at things like rashes to see if I need to go to the doctor.
For safety reasons, I’ve stopped taking children between two and five because they are more likely to run off in the park, and I can’t do things like cutting babies’ fingernails. Fortunately, both of my daughters are now foster carers as well, and all my children live within a 10-minute walk, so I have a lot of support. My adopted son, who is 24 and has Asperger’s, still lives with me.
The biggest problem is that I can no longer drive, so if the children have contact days with their families, they have to live close by so I can easily get there. Even without foster caring, that was the most difficult thing for me because it meant losing my independence. I know my eyes won’t get better, but I also know I will get better at dealing with it.
The hardest part of fostering hasn’t changed since I lost my sight: it’s still saying goodbye. I don’t think you can be a good foster carer if you don’t get attached. It breaks your heart when they go, but I always think, if I had kept that first one, where would all the other 150 children have gone?
I’m 63 now and don’t know when I’ll stop doing this. I don’t think there is any better job in the world. I love to see a childless couple come into my house and meet their child for the first time. Or when a parent turns things around and gets their child back. When all of a sudden a parent sees the light, it’s an unbelievable feeling for the child, but also for me.
#MyAccessiblePandemic
Whether it’s a dance class, a work meeting or a doctor’s appointment, technology has allowed many of us to do more from home during lockdown, but is this “digital connectedness” here to stay?
As office spaces started to open up and people began socialising earlier this summer, Ruby Jones thought about the elements of her life that had improved when the world slowed down.
The disability activist, who works for the University of Exeter’s Student Union, lives with Ehlers-Danlos syndrome. The connective tissue disorder sometimes requires Ruby to use a wheelchair or crutches, and can also cause fatigue.
But she found that elements of lockdown benefited her lifestyle and helped her to manage her condition.
Wondering if other people had also spotted silver linings in the months stuck at home, Ruby created the hashtag #MyAccessiblePandemic on Twitter.
She tweeted: “I’m starting a hashtag to highlight how the pandemic has improved accessibility for disabled people. I’ll start: Working from home means I am able to work a full-time job without exhausting myself to the point of hospitalisation.
She told the BBC: “I’ve done meetings from my bed with members of university senior management and I wouldn’t have been in that room if it wasn’t for the digital access.
“I just wanted to highlight the things that we’ve learned that have really benefited accessibility, to show employers and organisations how important it is to keep these things as an option.”
Accessibility means that people can complete an activity in a similar amount of time and effort as someone who does not have a disability, and they are therefore not excluded from it and can stay independent.
This could include replacing a reception desk at work with one that is at a lower height, so that a wheelchair user can see over the top of it.
Ruby says being able to work from home is the only thing that has allowed her to keep her first full-time job.
She says she has been “overwhelmed” by the response to her hashtag.
On the whole, some of the gains made from lockdown – such as home-working – have been welcomed by disabled people.
One Twitter user calling themselves Ghost Toast said their grades had “never been better” because they were able to attend all their university classes, which had moved online. Technology has also enabled them to rewatch classes.
“Online classes meant I was able to attend all my university classes and actually take things in and learn, instead of my disabilities getting in the way. And if I needed to, I could rewatch them, and my grades have never been better.”
Hazel felt that live-streamed events and social distancing helped her to manage her agoraphobia.
She said: “Events being on Zoom mean that I can actually attend despite my agoraphobia and social anxiety. Social distancing on buses means I can use them without fear of strangers sitting next to me. Outdoor seating at cafes means I can eat at them without having a panic attack.”
Several other people said they had managed to expand their circle of friends and their social life during the pandemic.
Purple Giraffe tweeted: “I have gained more friends through online events than I did before the pandemic. I have a bigger social life. I have a working-from-home job which means no more fatigue and stress from a London commute.”
Disability charities such as Leonard Cheshire have said it should not have taken a pandemic for employers to allow and enable remote and flexible working.
The charity said it’s important this “doesn’t go backwards” in the future.
Ruby is also hoping that employers and other organisations will continue to offer a mixture of digital and in-person activities. One of her biggest takeaways is that remote working is not suitable for all, including those with a disability.
Twitter user Julie said she had become more ill while working from home due to hyper-sensitivity to blue light, and constantly being in front of a screen. She describes her job as “unsustainable”.
“I think a combination of what works for people is really important,” says Ruby, “because one thing is not going to benefit everyone”.
Many employers say they would be willing to embrace a mix of home and office working in the future.
Ruby believes it is going to become even more important for employers and educational establishments to offer a combination of ways for people to engage with a workplace or a course, in order to attract talent.
She thinks there will be consequences for anyone who is not offering this flexible or hybrid way of working in the future, in terms of diversity.
“You’re excluding a whole group of people that could bring so much value to your life, organisation or institution.
“The last 12 months has just normalised digital access, despite it being quite frustrating that these provisions have only been put in place when it benefits the mass population – despite many disabled people asking for these things for years.
“It has been really beneficial and I think we’ve got this now – we’ve proved it works, let’s carry it on.”
Too many people in Northern Ireland have had claims for their Personal Independence Payment (PIP) “unfairly rejected”, an investigation has found.
The damning report conducted by the Public Services Ombudsman Margaret Kelly was published on Thursday.
It found that applicants were kept “in the dark” by the Department for Communities and Capita, which carries out PIP assessments.
The communities minister said she was “committed” to “positive change”.
Capita said it will review the findings of the report.
PIP replaced Disability Living Allowance (DLA) in 2016.
Ms Kelly’s office carried out a 20-month investigation into complaints about the new system, which provides benefits to some of the most vulnerable in society. https://emp.bbc.co.uk/emp/SMPj/2.43.3/iframe.htmlmedia captionPIP claims: ‘It was a humiliating process’
In her report, she stated that “repeated opportunities were missed to make the right payment as early as possible in the process”.
It found that both the department and Capita often failed to seek and use further evidence, including that from medical professionals, in its assessments.
This meant claimants had to “continually challenge the decision, often all the way to appeal, before the correct decision was made”, the report stated.
It said the repeated nature of these failings constituted “systemic maladministration”.
‘Intrusive, cold and calculated’
Londonderry woman Sinead Quinn, who lives with both physical and mental health conditions, said she was not surprised by the findings of the report.
She first applied for PIP in 2018 at a time when her health was “particularly fragile”.
In the years since, her experience of the system has been “absolutely horrific”.
“Every step of the way it is, in my opinion, set up to put people off,” she told BBC Radio Foyle.
It is a process that is “distressing and terrifying”, she said.
Three years ago she was awarded PIP after being assessed twice – after assessors lost her first assessment, she was called back three weeks later to undergo the process again.
Earlier this year, she was reassessed during a one-hour phone call. It led to her payment being slashed.
It was “intrusive, cold and calculated”, she said.
Ms Quinn added: “To be able to go on the telephone with someone you don’t know, as someone who struggles with mental health problems, is a massive challenge.”
She said that the process involved “very personal questions about how your disabilities affect you” and that the people were “not actually taking into consideration what you are saying”.
She recalled breaking down three times during the assessment.
“But my mental health was absolutely fine according to the assessor,” Ms Quinn said.
“How the decision was reached was completely inadequate.
“They didn’t even ask for any medical history from my GP. I have no idea how a one-hour conversation can give you a window into someone’s health for the last three years, or into the next three years,” she said.
The ombudsman advised Capita and the department to “shift their focus to ensure that they get more of the PIP benefit decisions right the first time, so that the most vulnerable people in our society get access to the support that they need, when they need it”.
Ms Kelly said this would also safeguard public resources by reducing both the time and costs associated with examining the same claim on multiple occasions.
Among the investigation’s findings were:
- Many PIP claimants received correspondence from Capita that said all health professionals listed had been contacted, when in fact this was not the case
- Only one of the 96 cases considered included a request for further evidence after the initial review
- The most common reason for not requesting further evidence was that “it was unlikely to be obtained within the timescale required”, despite the fact that there were six weeks available to gain evidence
- Capita used information on the number of assessment reports completed and submission times to decide on salary bonuses for disability assessors; these had the potential to inhibit the appropriate use of further evidence in making assessments
- Despite Capita and the department’s contention that further evidence has a key role in the PIP process, it was often only following the submission of an appeal to the tribunal that the role of further evidence was elevated
- Too many vulnerable claimants may not have been identified for additional support at the start of the PIP process because of the department’s narrow interpretation of its own guidance
‘Not fit for purpose’
Foyle MLA Mark H Durkan, of the SDLP, described the report as “unequivocal proof of systemic maladministration”.
A persistent critic of the PIP system, Mr Durkan said the “the system is plagued by a litany of failures, inherent deficiencies and is not fit for purpose”.
“The report is scathing on Capita’s performance and questions really now need to be asked of Minister [Deidre] Hargey as to why she has extended their contract for a further two years,” Mr Durkan said.
“Ultimately, people are not getting the support or dignity they deserve,” he added.
In a statement, Communities Minister Deirdre Hargey said she was “firmly committed to enacting positive change in PIP delivery”.
Ms Hargey said her department has “consistently demonstrated that commitment by taking forward recommendations from statutory reviews previously carried out by Walter Rader and Marie Cavanagh”.
“I remain open to scrutiny and welcome the opportunity to drive further improvements in the service to ensure it is delivered in a compassionate and empathetic manner,” she added.
In a statement, Capita said: “We strive to continuously improve the PIP assessment process that we deliver on behalf of the department.
“We are committed to delivering a professional, efficient and kind service for every PIP applicant we assess.”
‘Beggar’s belief’
Samantha Gallagher, who helps claimants with PIP issues, said she was not shocked by the report’s findings as she finds the claims process very difficult.
Ms Gallagher, who works at Community Advice in Fermanagh, said medical evidence was being “disregarded by assessors” and she cited an example of one claimant whose PIP award was substantially increased on appeal.
“It beggars belief that weight wasn’t given to letters coming from consultants and neurologists and GPs – there are no words at times,” she told the BBC’s Good Morning Ulster programme.
Ms Gallagher said she believed the claims process was designed to be difficult to discourage fraudulent claims, but added that the majority of claimants were in genuine need and were suffering as a result.
“What we need to remember here is this is a health-related benefit – so it’s about people who have ill health. They need respect, they need to be treated with dignity,” she said.
“So far from what we can see, especially from the outcomes of this report, that has not been happening. We just need to remember we’re dealing with people, not numbers.”
PIP Mobility Awards Appear Manipulated.
Thousands of claimants claiming PIP for mental health conditions are missing out on PIP payments because their reports appear to be manipulated.
Research conducted by Benefits And Work has shown that although the award rates rose for a year they’ve now dropped down to their previous levels which have started to rise again.
This is appalling because award rates should not have been shown to fall, they should have continued to rise and staying at a higher level.
Benefits And Work have also looked at the award rates for all conditions that the DWP consider would be affected by mental health and surprise, surprise they’re the same.
According to the DWP’s own estimates regarding mental health conditions approximately 6% of the entire PIP caseload should have moved from no award of the mobility component to enhanced.
Indeed a further 6% should have been moved from no award to a standard award.
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The Blind Couple Fundraising To Give Others Guide Dogs
A blind couple who say their guide dogs have been instrumental in the freedom they have experienced during lockdown now want to help others.
Mel Griffiths, of Nottingham and a dog health advisor for Guide Line, the Guide Dogs’ national helpline, walked the equivalent of 53 miles (85km) in a single week with her companion Elsa to raise money for the charity.
She is now aiming to raise £90,000 to mark the charity’s 90th year.
Mel, whose husband Gavin is also blind, said: “To be able to just get out there and walk for miles and miles, and just have that freedom to get out of the house every day has really kept me going through lockdown.”
Love Island’s First Physically Disabled Contestant
For a show that’s long faced criticisms over a lack of diversity in its cast, the inclusion of Hugo Hammond as Love Island’s first physically disabled contestant feels a progressive move years in the making.
But it’s a step rather than a leap.
Hugo was born with clubfoot – which makes the foot twist downwards and inwards – but after numerous operations as a child, he says people can “only really tell when I walk barefoot. I’ve got a really short Achilles… I walk slightly on my tip toes.”
This will still no doubt spark conversation both inside the villa and among viewers at home, which will ultimately help raise awareness.
Of course Hugo’s disability doesn’t define him – he’s there as a dashing PE teacher and former cricketer for England’s physical disabilities side, and that’s before we get to know his personality.
But have producers done enough to accurately reflect disability in the modern dating world? Bosses previously told The Mirror in 2019 that the villa had not been adapted for people with disabilities due to insurance costs and “budget constraints”.
The nature of Hugo’s disability allows them to keep disability inclusion, and the social stigma surrounding dating someone with a disability, within convenient limits.
A toned Paralympic athlete who uses a wheelchair? Maybe next year.
DNA Kidderminster Hospital
Same Difference has received the following shocking and scary story by email:
A well-known activist against Assisted Suicide visited Kidderminster Hospital for a routine pre assessment for an operation to remove a cataract.
Albeit because of Covid and the fact that clinics have been moved to various hospitals around the region i.e. everyone in the Worcestershire Area goes to Kidderminster Hospital for Pre-operative eye screening. They then go to other hospitals for the actual operation which will be confirmed in due course.
The Activist was asked to sign a consent form for the operation and also given a document to “hand to the receptionist” albeit the activist had had eye drops administered and could hardly see the “hand to the receptionist” form it had DNA in several boxes with the option to tick boxes.
The writing was so small approximately 6 to 8 point font.
It was difficult to focus on also beside the DNA it said on some tick boxes end of life path or DNA refer back to GP and various other options with DNA at the beginning of each sentence.
Unfortunately the activist didn’t have a chance to take a picture of the document before it was taken off her by a member of staff being helpful said I will deal with that for you.
The majority of the staff were supportive and helpful however the activist considered the DNA form was a “catch all” document to be used in several areas in the hospital.
Considering the procedure is under local anaesthetic why is the form even used.
The activist was fortunate to have the skill to read the document and will be writing a letter dated and signed before the procedure and will ensure it is on her records before any invasive procedure can be done.
This is to protect her human right to live!
Triumph Trailer- Starring RJ Mitte
The Coward By Jarred McGinnis
Jarred McGinnis’s debut novel draws on his own experience of living with a disability, and his protagonist shares his name. “The distance between fiction and memoir is measured in self-delusion,” McGinnis writes, gnomically, at the start.
However close or not to the author’s life, the fictionalised Jarred certainly has no shortage of material: when he’s left unable to walk following a car crash at 26, it’s the latest trauma in a life full of them. Jarred’s mother died when he was 10, causing his father’s alcoholism to spiral and Jarred to turn into a self-destructive teenage runaway. When he rings his father, Jack, to ask him to collect him from hospital in Austin, Texas, it’s the first time they’ve spoken in a decade.Advertisementhttps://83940d1398757cce8572d039166aa2b6.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html
The Coward moves between a present-day narrative of father and son trying to repair their relationship and a gradual, if rather heavily foreshadowed, revealing of all Jarred has been through. The author, himself a wheelchair-user, writes with pitch-black humour about the disabled experience, offering an utterly unsentimentalised perspective. Jarred can be self-pitying, but he scorchingly refuses anyone else’s pity; he makes a T-shirt emblazoned with the words “I am not your good deed for the day”.
Happily, Jack matches him in wise-cracking and piss-taking, and their cynical repartee gives The Coward real energy. But this is a book of two tones, and when things get serious, the story gets bogged down in melodramatic pronouncements and accusations (“you think you’re the only one with shame and guilt?”, and so on).
McGinnis writes about physical pain with much more distinctive vividness, however, and his reflections on addiction cut through. A scene where the teenage Jarred goes to his father’s AA meeting and resists “the selfishness of recovery” is particularly potent. And if the eventual redemption never really seems in doubt, the reader is still sure to feel invested in Jarred, and Jack, finding it.
A public inquiry will this week hear from students and parents after more than 120 pupils at a school for disabled children were caught up in what has been called the worst treatment disaster in NHS history.
From 1974 to 1987, those children were offered treatment for haemophilia at Treloar’s College.
At least 72 died after being given a drug contaminated with HIV and viral hepatitis.
“We’ve lost so many friends from Treloar’s and it’s absolutely heartbreaking,” said Richard Warwick, a pupil at the Hampshire school in the late 1970s who was later diagnosed with HIV.
The inquiry into the use of infected blood began taking evidence from people connected to the school on Monday.
Former headmaster, Alec Macpherson, is one of those due to answer questions. “It caused those boys a lot of anxiety and a lot of upset,” he told the BBC ahead of the hearing.
“It put a rage inside them – why me, why has this happened to me, why have I got this dreadful disease?”
Lord Mayor’s Treloar’s College was a boarding school for physically disabled children with a specialist NHS haemophilia centre on site, run by a dedicated medical team.
By the mid 1970s, a new treatment for haemophilia, known as factor VIII/IX, became available for the first time.
It meant those with a serious form of the blood disorder could live a normal life without the risk of a bleed.
The NHS was not self-sufficient in the blood plasma used to make the drug so it was imported from overseas, most notably the US.
Batches were widely contaminated with hepatitis A, B, C and later HIV, infecting thousands of haemophiliacs across the UK.
Ade Goodyear joined Treloar’s in 1980 at the age of 10. He described life as “wonderful” with supportive teachers, nurses and good friends.
Like dozens of other boys at the school, he was given factor VIII to help control his bleeding.
“With one of my very first shots, I got hepatitis and was placed in isolation for two weeks,” he said.
In 1985 he was taken into a small office with a group of boys to be told he had tested positive for HIV – then a newly discovered virus with no known treatment and a short life expectancy.
“The doctor was upset and pointed at us and said, you have it, and you haven’t. And I was back in science by 1.50pm. I didn’t even get the afternoon off,” he said.
“A friend of mine picked up a pot plant and threw it against the wall of the haemophilia centre. It was a beautiful summer’s day and I remember thinking, how many more sunrises like this am I going to see?”
Ade’s two older brothers died after treatment with factor VIII – Jason from Aids in 1997 and Gary from health problems linked to hepatitis C in 2015.
For pupils like Ade and Richard it meant living with the stigma of what was then a little-known disease.
Students were followed by newspaper reporters outside the school gates and shouted questions about their HIV status.
Just 32 of the 122 haemophiliacs who attended the school from 1974 to 1987 are still alive today. Most died after contracting HIV or viral hepatitis.
It’s hoped the public inquiry will be able to answer questions about what happened at Treloar’s and the NHS haemophiliac centre run from the site.
Families want to know why they were not told about the potential risks of Factor VIII earlier and why it took many years until the drug was heat treated to kill viruses and other contaminants.
“What happened at the school comes back to haunt us every day,” said Stephen Nicholls, a former pupil who was infected with hepatitis C after his treatment.
“We will never forget the Treloar’s story and those memories of what happened here.”
What is haemophilia?
It is a rare genetic condition in which the blood does not clot properly. It mostly affects men.
People with the condition produce lower amounts of the essential blood-clotting protein known as factor VIII and IX.
Former students will give evidence this week, some anonymously, along with the parents of children who lost their lives.
The haemophilia centre on the site was run by NHS doctors and nurses and not staff directly employed by the school, which still cares for physically disabled children today.
“Although no-one has at any point suggested that Treloar’s was at fault, it is a tragic part of our past,” the school said in a statement.
“It was, and still is, a very difficult time for our affected alumni, their families and staff who were here at the point.”
On the cover of his superb debut, Cola Boyy sits strumming a guitar surrounded by various cartoon versions of himself, a jukebox in the corner of the room and his prosthetic leg on a table, next to a gun. “I wanted to take my disability and put it on blast,” the southern California musician, real name Matthew Urango, who was born with spina bifida and scoliosis, has said. His music has a similar playfulness – it’s hard to beat his publicity team’s apt description of it as “a time-travelling Delorean with Prince in the passenger seat” – though fuelling it all are prescient themes of unity and kicking back against the system.
Opener Don’t Forget Your Neighbourhood, with guest production from sampladelic team the Avalanches, is a deliriously upbeat paean to fighting for your town and belonging. Song for the Mister, dedicated to struggling single fathers, channels late-night minicab pop and pulls off the tricky balance of being irresistibly catchy and yet wonderfully moving. Air’s Nicolas Godin, MGMT and LA keysman-to-watch John Carroll Kirby crop up too amid the sugar rushes of disco, funk, house and psychedelia.
The giddy ride ends with Kid Born in Space, referencing people who have mocked him, though Cola Boyy is having the last laugh: Prosthetic Boombox is a slick pop rocket firing off towards exciting new dimensions.
Fourteen Years Of Same Difference!!!
It’s hard to believe but it’s true. Same Difference started fourteen whole years ago today!
In that time it has grown beyond my wildest dreams.
But, readers, I have never once forgotten that I wouldn’t be here without you. This is my annual post of thanks, and my reminder to you all that I still read every comment and appreciate every hit.
I wish every single one of you the very best, always.
Samedifference1
Guardian Interview With Jo Whiley
The Guardian have interviewed Jo Whiley on her campaign to change the vaccine priority list and her work as a DJ and presenter.
Disabilitease: The Disabled Performers Owning The Stage
What connects burlesque, body confidence, and people with hidden disabilities? Emma Donohoe meets the performers owning their sexuality and challenging perceptions as part of a new documentary for BBC iPlayer.
Through cabaret and burlesque they’re trying to put together a show called DisabiliTease… but it’ll be touch and go whether they can they sell enough tickets to make it succeed.
“I feel like I’m flying, don’t feel my pain anymore…a lot of people don’t think we’re sexual or have sex… it’s seen as shameful and should be hidden, [but] it’s nothing to be ashamed of,” says Dottie May, one of the performers.
Every cast member in DisabiliTease has a disability. In coming together for the first time their goal is to create a platform for people with disabilities both visible and invisible – where they can showcase their talents and find their performances empowering and liberating.
A deaf campaigner is taking legal action against the government, after complaining that it failed to provide in-person British Sign Language (BSL) interpreters at No 10 Covid briefings.
Katherine Rowley, 36, from Leeds, says the government breached its obligations under the Equality Act to make broadcasts accessible to deaf people.
She says the failure to convey vital facts led to “stress and frustration”.
The government said it was “committed to supporting disabled people”.
A spokesperson said BSL interpretation of the No 10 coronavirus briefings was available on the BBC News Channel and BBC iPlayer, which could be accessed via Freeview.
“We continue to work across government to ensure that information and guidance is fully accessible,” he added.https://emp.bbc.co.uk/emp/SMPj/2.43.2/iframe.htmlmedia captionVicky Foxcroft MP asks the PM why there is no sign language interpreter in his briefing room
Ms Rowley was 25 weeks pregnant when she started the claim for a Judicial Review, which will focus upon two Covid briefings in September and October 2020.
During those two briefings there was no sign language interpreter at all, either in person or superimposed by broadcasters.
She says the stress she suffered in being unable to access government information during the briefing, impacted on her pregnancy and her wellbeing.
Speaking to the BBC through an interpreter, Ms Rowley said: “It was frustrating. Why wasn’t there an interpreter on the television?
“It’s important to get that information – the world should know – and for me, on my own, where is that information?
“I feel ashamed – I’m deaf, I can’t access information – but really it isn’t my fault, not at all.”
At the High Court on Wednesday, Ms Rowley’s barrister Catherine Casserley argued there has not been a BSL interpreter present in the room with the speakers at any of the UK government Covid briefings in England, unlike in Scotland and Wales.
She said providing “on-platform” interpretation would have been more inclusive than broadcasters superimposing an interpreter, because it means the sign language is visible wherever and whenever footage of the briefing is shown.
‘It became impossible’
The government was failing to meet the obligations of equality legislation and it should be ordered to provide on-platform legislation, Ms Rowley’s barrister said. She is also seeking compensation for injury to feelings, the barrister added.
Zoe Leventhal, the barrister representing the Cabinet Office, said the claim should be dismissed.
She said “damages for injury to feelings” were “not merited here”.
Mr Justice Fordham, who oversaw the online trial with sign language interpreters, said he would deliver a ruling at date to be determined later.
The High Court heard that there are 70,000 deaf people in England who use British Sign Language.
Ms Rowley’s solicitor Chris Fry said he is also representing 350 other deaf people who have made similar claims to Ms Rowley, but their cases are on hold until this one is decided.
Many who use BSL as their first language say they cannot rely on subtitles because the average reading age for deaf people is nine years – much lower than those in the hearing population.
“I have dyslexia myself – I am a slow reader – so that means when I was reading the subtitles, I would miss so much information and [it] would just mess up my head. It would be so difficult – it became impossible,” Ms Rowley told the BBC.
Lynn Stewart-Taylor started the #WherestheInterpreter campaign after the first Covid briefing in March 2020.
Despite watching it, she said she came away with nothing of what had been said, as there was no interpreter.
“Lots and lots of other countries have managed to get the interpreter in the same room. It’s accepted that members of the deaf community get the information at the same time as the hearing members of the community.
“We seem to be the only country that haven’t been able to make that happen and we feel very separated and segregated.
“We don’t feel accepted, we don’t feel that our language is respected and recognised. It’s almost as if we don’t exist.”
Mr Fry, the solicitor representing hundreds of deaf people in their claims, said: “Ensuring that information is provided in an accessible format can rarely be more important than in the midst of a pandemic.
“This case has brought deaf people together in the most remarkable way to challenge the government to do better, and to fulfil what we say are its obligations under the Equality Act.”
‘Unsafe and scared’
Amanda Casson-Webb, joint chief executive of the Royal Association for Deaf People, said this was the first time the deaf community had joined forces to litigate a Judicial Review on the provision of sign language interpreters.
A government spokesperson said: “We are committed to supporting disabled people through every stage of this pandemic and have established BSL interpretation at the No 10 press conferences via the BBC News Channel and iPlayer, available on all TV packages as part of Freeview.
“The BBC has also made their video feed for the BSL interpreter available to all other broadcasters and for use on No 10 social channels.”
But deaf people supporting the Judicial Review say having an in-person interpreter at briefings avoids any technical issues and ensures that a BSL-interpreted version is available on any channel.
Covid Vaccine To Be Required For England Care Home Staff
This is good news, and a victory for common sense and for the protection of the most vulnerable.
Vaccinations are to be made compulsory for care home staff working with older people in England, the BBC understands.
The move, first reported in the Guardian, is expected to be announced by the government in the next few days.
Care staff are expected to be given 16 weeks to have the jab – or face being redeployed away from frontline care, or lose their jobs.
The government is also set to begin consultations on compulsory vaccination for other health and care staff.
Care organisations have warned that compulsory vaccinations could cause significant difficulties in a sector which already struggles to recruit.
The government, however, is believed to have considerable concerns about low take-up of the vaccine in some areas, including London.
Workers who can prove they are medically exempt from getting the vaccine will not be affected by the measure.
The move follows a consultation by the Department of Health and Social Care.
A department spokeswoman said: “Vaccines are our way out of this pandemic and have already saved thousands of lives – with millions of health and care staff vaccinated.
“Our priority is to make sure people in care homes are protected, and we launched the consultation to get views on whether and how the government might take forward a new requirement for adult care home providers, looking after older people, to only deploy staff who have had a Covid-19 vaccination or have an appropriate exemption.”
She added that the department’s response to the consultation would be published “in due course”.
With many thanks to Benefits And Work.
Joy Dove, the mother of Jodey Whiting has condemned the ‘abominable’ behaviour of the DWP as they resort to dirty tricks to prevent a second inquest into Jodey’s death, with even the High Court judge criticising their callous behaviour.
Jodey died in February 2017. Her ESA had been stopped after she failed to attend a work capability assessment.
Jodey had been seriously ill with pneumonia, had been receiving treatment for a cyst on the brain and was taking strong painkillers. Nonetheless, she had been refused a home assessment for her ESA and failed to open the appointment letter for a WCA at an assessment centre.
As a result, her benefits were stopped.
An inquest into Jodey’s death lasted less than an hour and failed to even look at the part the DWP played in the tragedy.
Her family have since been fighting for a new inquest to properly examine the part played by the DWP.
The DWP have known since December that a hearing was due to take place on 22 June.
Yet with just three weeks to go, the DWP suddenly applied to be made a party in the case and to have permission to address the court orally on three separate matters.
This would have made the case last much longer, probably meaning it would have to be relisted for a later date. It would also have greatly increased the costs for Jodey’s family and massively increased the distress her mother is experiencing as she takes on the coroner’s court system and the DWP.
The judge in the case was very critical of the DWP’s late intervention.
Instead of allowing three oral submissions, they are only allowing written submissions on one point.
This still means the case will last for one and a half days, instead of just one day
Joy Dove said:
“I am appalled by the behaviour of the DWP. I believe they caused my daughter’s death by their callous disregard for the anguish they caused her and now, with the same abominable attitude towards ordinary people, they are causing me more distress. They have known about my application for a second inquest since December and only now, just 10 days before the hearing is due to take place, have they got around to addressing Jodey’s case.”
Leigh Day partner Merry Varney said:
“We are pleased that the judge recognised that the Secretary of State’s behaviour towards Joy Dove has been woeful and that at this stage he has only allowed her lawyers a limited narrow role in the hearing in her application for a second inquest into the death of her daughter.
“The conduct of the Secretary of State has caused significant additional and wholly avoidable, distress for our client. No adequate reason has ever been provided for the delay and now, at this very late stage, because the hearing will now take longer, she has put our client to extra expense and inconvenience, as well as worry and distress. We welcome the Court’s recognition of the lack of apology or regard for our client by the Secretary of State and our client and her family hope the High Court will recognise the ongoing need for justice for Jodey and to allow her daughter the inquest that her case clearly merits.”
Medical treatment was withheld from people with learning disabilities during the pandemic, The Telegraph can disclose.
Patients admitted to hospital with Covid-19 were not given potentially life-saving treatment because of their conditions.
The learning disability charity Mencap said they were aware of cases where “treatment was withheld” and this led to the patient “dying prematurely”.
The disclosure will fuel concerns about how patients with learning disabilities were treated during the pandemic and raise questions about how medics view individuals with such conditions.
Office for National Statistics figures from last year show that nearly six out of every 10 people who died with coronavirus in England were disabled.
Last week, the Telegraph revealed how patients with mental illness and learning disabilities were given “do not attempt resuscitation” (DNR) orders in England during the pandemic.
Matt Hancock pledged to investigate orders that were “inappropriately” given and said that he wanted to “know” about any cases where people may have been “disobeying the guidance”.
The Telegraph has been told about cases where people with learning disabilities did not receive some treatments during the pandemic.
Edel Harris, chief executive of the organisation, told The Telegraph that “during Covid some people did not receive the level of care they deserved when they were admitted to hospital”.
“We are aware of cases where families believe treatment was withheld because their loved one had a learning disability and, in some cases, this led to them dying prematurely”, he said.
A woman whose sister caught Covid-19 in a care home in the south of England has also alleged that her relative was denied treatment because of her disability.
Sherin Ratcliffe’s sister – who was in her 50s and had down syndrome – caught Covid-19 in the care home where she lived.
Once in hospital, Ms Ratcliffe’s sister – whom Ms Ratcliffe has asked The Telegraph not to name – struggled to breathe.
Ms Ratcliffe said her sister was “a jolly soul”, but had the mental age of an 18-month old and was non-verbal. She moved into the care home after her parents became too elderly to care for her.
When her sister was being treated, Ms Ratcliffe asked about use of a CPAP mask – a machine used during the pandemic to help patients breathe more easily – and a doctor said “‘it would be too distressing’ for my sister to administer more intensive treatment because they couldn’t sedate her to apply this kind of treatment, she had to be conscious for it”, she said.
A couple of days later, the hospital said that her sister’s oxygen levels had dropped further and the next step would be palliative care.
Ms Ratcliffe’s sister died on April 26.
Ms Ratcliffe said that although the hospital did their best for her sister, she was “concerned that given the pressures that they were under… it just becomes a de facto thing that for people with learning disabilities, the treatment only goes up to a certain point and then will not continue”, she said.
A drumbeat comes in, then the keyboard. A sequence of notes marches towards the singer.
“I pictured a rainbow
You held it in your hands
I had flashes
But you saw the plan”
The music reached somewhere deep in Thomas’s brain.
And as the lyrics of The Waterboys’ 1980s hit, The Whole of the Moon, came through Thomas’s earphones, he experienced six flashbacks – each triggered by the one before.
For the 30-year-old, this was an extraordinary moment. One he had craved for 10 long years – ever since his entire memory had been wiped when he was hit by a car. “It was the most magical thing ever,” he says of the memory-chain.
“I was sitting on this weird blue floor and I could see this silver radio. Then, I was in another place and I was holding this man’s giant hand… and then there was another memory.”
He recalled a Christmas tree, towering over him. “There was a woman standing, and she was young and she was smiling and she didn’t have grey hair. It was my mum and I was her little boy. And it was real.”
Thomas immediately wrote the memories down.
He needed to be sure they were real, and it wasn’t his brain playing tricks on him. Could it simply be another manifestation of his brain injury, like the personality change and face-blindness he had contended with?
But if the flashbacks were real, how had his brain, finally, managed to unlock his memory?
It was evening and still busy in central London when Thomas Leeds headed to Green Park station to pick up a lift from his father. The 19-year-old was on a gap year before starting university and had been to meet a friend.
At 21:00 GMT, he crossed the road and was hit by a car.
The officer who witnessed the accident was visibly traumatised when he later recounted what had happened.
Thomas had been thrown over the roof of the taxi and landed on his head. The front of the vehicle had been dented, the bonnet wrecked, the windscreen smashed and the roof concaved by the impact of his body.
Thomas’s father, Dr Anthony Leeds, rushed to St Thomas’ Hospital after the police called telling him there had been an accident.
But Thomas, it seemed, had been extraordinarily lucky and escaped with a minor head injury. “There was very little evidence of injury other than scratches and bruises,” Anthony remembers. The next morning, Thomas was discharged from hospital.
Over the next couple of days Thomas complained of nausea, a terrible headache and back pain. When the police officer phoned for an update he was shocked to learn Thomas had been discharged. This unsettled Thomas’s mother, Jacqueline. “The officer’s feeling was no-one could walk away from that,” she says.
After hearing this, she took Thomas to A&E and demanded a scan. It revealed the “utterly shocking” truth – a blood clot had formed in his brain.
“He was 24 hours away from death,” Anthony says.
Thomas underwent surgery to remove the clot. And when he came around in the intensive care unit, he was said to be docile.
“I have vague memories of being very confused, but oddly enough I wasn’t afraid. I didn’t know to be afraid,” he says. “I was like a baby.”
He describes being in an “emotional bubble” – something brain injury charity Headway says is common after a head trauma because of the chemical imbalance caused. It can leave the patient feeling, surprisingly, content.
Thomas enjoyed seeing the people who came to visit him as he recovered. Though they seemed familiar, when they told him they were his parents and his five siblings, he couldn’t recall them.
Everyone put this early confusion down to the effects of the morphine.
“He walked and talked and that to us was fine,” Jacqueline says. “That’s the most we could have hoped for, so we didn’t go probing. We all assumed Thomas was okay.”
But when he returned home, Thomas didn’t remember the house – even though he’d lived there since childhood.
People tried to jog his memory about what he had been doing in the months before the crash by mentioning friends and the interests he had.
“I really tried to fit in with everybody when they told me these stories,” he says, but he remembered nothing.
Realisation slowly dawned on the family – Thomas had lost all of his pre-crash memories.
Initially this didn’t faze him. The first few years drifted past as he recovered from three back fractures also sustained in the accident. He says the “emotional bubble” continued to cocoon him.
“I suppose it’s how most people remember their childhood summers. Everything was wonderful, so big and unlimited, and I sort of remember – it sounds so silly – just sitting in the park under trees.”
Thomas was fortunate because, although he couldn’t remember his school days, he had retained basic levels of reading, writing and maths. What had gone was his cultural knowledge and references – the things at the heart of conversations and relationships.
And while he was able to make new memories, his personality had changed, too. This is something a traumatic brain injury can do. Previously, he’d been cooler and more reserved, but now he was affectionate and excitable.
“My brother wasn’t glad that I’d had this accident but he was like, ‘You’re much nicer’,” Thomas jokes. His mum Jacqueline noticed it too. “He is very emotional. He’s very open. There’s something of the child that isn’t in the others.”
As Thomas recovered he began to wonder about his future.
He thought about the university place he’d been due to take up before the crash. He had planned to study design, but when he looked at his drawings they no longer interested him.
“That boy that I was, just feels no more real than an ancestor. You know they existed and maybe you’ve seen pictures but they don’t feel real,” he says. “The first few years it didn’t bother me. We were all so young so everything was about ‘tomorrow’. But as our 20s ticked by, everything became about ‘yesterday’.”
Thomas’s future had stalled. Meanwhile, his siblings and friends were now in their mid-20s and had moved on with careers, houses and children.
“I still felt very lucky to have all that I did and just be alive, but having to face the hard facts of the future without a beginning started to feel really unfair.”
And there was something else missing in his life too – love.
Internet dating was starting to get a better reputation by 2010, so Thomas signed up. He met a few girls but nothing came of it. Christmas was approaching when he arranged to meet Sophie. She was also a Londoner, and also had five siblings.
After telling her about his unique situation, they met for dinner and went for a wander through the West End. They hit it off and planned to meet the next day. As they parted, Thomas said: “I’m sorry, but I won’t recognise you tomorrow.”
There was another complication from the crash. Thomas had developed prosopagnosia – face blindness. It meant he couldn’t recognise anyone out of context, not even his parents, let alone a girl he had just met.
With face blindness, the brain is unable to recognise the variations in faces – the arch of an eyebrow, the angle of a tooth, all of which help us identify people.
Many of the 1.5 million people in the UK who have it are born with it, but Thomas’s accident had damaged a small area at the back of his brain responsible for vision, recognition and co-ordination.
He learned strategies to recognise people using location, context and dropping pins in mobile phone maps, and he can place someone on hearing their voice. But there was something different about Sophie. “The week before we met, she’d dyed her hair bright red, that sort of crazy red. She was like a beacon.”
For the first time in years, Thomas was able to recognise someone in a crowd, and their love story began.
They dated and two years later they married. Soon after, one daughter came along, then another. Sophie never stopped dying her hair and is still the only person Thomas can recognise.
“She’s amazing. She always makes me feel that she’s lucky to have me. It made me feel a lot better about the future.”
Ten years on from the accident, although Thomas had re-visited locations from his past and interrogated family and friends, none of his memories had returned.
And then came the remarkable breakthrough. Thomas had curated an ’80s playlist for his 30th birthday – music he, apparently, grew up with. The night before his party, he went to bed and put his earphones in. He listened to the playlist track-by-track and knew all the songs by heart.
He pressed skip one more time. Somehow, the track The Whole of the Moon, which peaked at number 3 in the UK charts, located Thomas’s past.
“It really changed everything for me,” he says of the series of flashbacks.
“It was so short, nothing was said, but knowing that it was real and I’ve got it in my head and it’s not just a story, and it’s not just a grainy photograph … it was a little bit of my beginning.”
To explain the science behind the flashbacks, neurologist Dr Colin Shieff says memories are made up of “packets of chemicals” involving various dimensions including smell, taste and touch.
“It just needs little memory chemicals floating around to trigger a slightly bigger picture,” he says. “That causes a cascade that he translated into a vision.” After years of miss-firing, the packets of chemicals in Thomas’s brain had collided and unearthed memory.
So were they always there?
Dr Shieff says Thomas’s long-term memory is probably still there but remains out of reach in an “absolutely terrible filing system”.
“You can have a manuscript of a book, and when you read it it’s wonderful. But if you drop those sheets and someone picks it up, then they’re faced with pages with lots of content that doesn’t follow. Some of the pages have got a bit screwed up and crumpled.”
A second burst of memories happened years later when Thomas came across The Snowman on YouTube while he was trying to learn about the childhood references he had lost. The unique images and soundtrack triggered another memory – lunchtime in the school canteen.
“It was enough to make me feel like I have an education,” he says.
Dr Shieff says “recovery can continue indefinitely”, so there is scope for Thomas to unearth more memories but no certainty.
As a stay-at-home Dad to his two young daughters, Thomas says “some days are better than others”, but little things like running around the park after his children can be difficult because face blindness makes it harder for him to recognise them.
He says the “empty years” sometimes get him down, but his daughters play in the same parks he once did, and he is creating new memories with them.
Another legacy of the crash is epilepsy, and on “bad head days” he can’t leave the house.
“The scar tissue of my brain interferes with the signals and is what causes me to have seizures. And that seems to be affecting my memory more and more.
“Knowing I might lose control of my consciousness can be quite terrifying.”
After a tonic-clonic seizure – where he loses consciousness – he temporarily loses about 10 years of memory. The last time it happened, he came round thinking it was 2008.
“I didn’t know who my wife was, didn’t know who the kids were. Sophie showed me the Amazon Echo smart speaker and it blew my mind.” He sees the humour in it now, and the family writes down these funny episodes so they’re there in black and white for Thomas to remember. Always.
He’s also become passionate about creative writing, an interest he apparently shares with his childhood self, and has written a fantasy-adventure for 8-to-12-year-olds.
His protagonist, Jayben, has epilepsy and wakes up with no memory in a world of elves – he’s a hero being hunted and must recover his memory before he is found.
He preferred writing a children’s book rather than a memoir because this way he wouldn’t be reliving his own story. He says it is therapeutic to turn the pain and difficulty into “something new and exciting”.
The book is the first in a series and has been signed by The Good Literary Agency. Thomas says he’s excited about the next chapter in his life. And while his writing moves forward, he is still trying to piece together his history.
“It’s been 18 years now and I am this person. It’s lovely knowing a little bit of who I was before, but I’ve had such a life now.” And he still treasures that flashback of his Mum at Christmas.
“Just knowing that I’ve got something real from before, from the beginning of my story, really helps me face the future.”
People with learning disabilities are still dying 25 years earlier than the rest of the population, a report has said.
The Learning Disabilities Mortality Review (LeDeR) calls for urgent action to prevent more avoidable deaths.
A quarter of learning disability deaths were caused by Covid in 2020, compared to 13% of other deaths.
NHS England said improving the health of people with a learning disability was a priority.
The LeDeR was established in 2015 to try to understand why so many people with learning disabilities were dying from avoidable causes, and to try and improve their access to healthcare.
The latest report compares data from the deaths of 9,110 people with learning disabilities who died over the past three years.
It found that while there had been some small improvements – life expectancy had increased by one year – people were still experiencing huge inequalities.
Pandemic highlighted disparity
In 2020, 24% of learning disability deaths were caused by Covid-19 compared to just 13% of deaths in the general population.
The peak month for deaths from Covid-19 was April 2020, when 59% of all deaths were from the virus.
It was the leading cause of death in men over 35 and women over 20 with learning disabilities throughout the past year.
Reviewers found that poor testing provision, a lack of support from specialist services and difficulties using the NHS 111 service played a part in many of the deaths.
In nearly a third of ‘do not attempt cardio-pulmonary resuscitation’ (DNACPR) orders made in relation to people who had died from Covid-19, the correct procedure was not properly followed.
In some cases, the reason given for a ‘do not resuscitate’ order was because the person had a learning disability.
One example cited in the report was because the person was “wheelchair-bound, needs to be hoisted, care home resident, learning disability.”
They also found many examples of poor care – in 42% of the deaths in 2020, reviewers felt that the person’s care had not met good practice standards.
‘Son denied use of ventilator’
Steven Baskin’s family feared that he could have become one of those statistics. The 43-year-old, who has Down’s Syndrome, was treated in hospital for Covid-19 at the beginning of the outbreak, in March 2020.
His father, John, was told that his son would not be given access to a ventilator should he need one, because of his “underlying health conditions”.
He said: “I received a call from a doctor who told me that a decision had been taken – should Steven require the use of a ventilator, then this would be denied.
“I was exercising in the park at the time of the call and had to find a bench to sit down – I was really taken aback.”
He discussed Steven’s condition with other senior doctors who intervened, and the decision not to give him a ventilator was reversed.
He said: “Steven had undergone treatment which affected his immune system, but other than this, he was perfectly healthy, and his treatment was going well.”
Steven recovered from Covid-19, but his family felt they had had to fight to get him the access to healthcare they felt he needed.
‘Not enough progress’
Report author Pauline Heslop, who is based at the University of Bristol, said: “This year, for the first time, we have been able to compare data based on the year of a person’s death.
“There are some small signs of progress being made, but this is not sufficient, nor sufficiently well distributed across people with learning disabilities from different ethnic groups.
“Actions taken to date, while welcome, have clearly not been enough to make the progress we should expect to see.”
Claire Murdoch, mental health director for NHS England, said: “Every year, people with a learning disability die sooner than they should and many from potentially avoidable conditions, such as constipation or aspiration pneumonia.
“Despite the pandemic, the NHS has ensured that three-quarters of people over the age of 14 with a learning disability have received their annual health check, two years ahead of the Long Term Plan target,” she said.
“It is vital we use this report to make real and lasting change to help close the health inequality gap seen throughout society.”
E-scooters in three cities will be modified to make an engine-like hum to alert people to their presence.
Provider Voi said 20 scooters in each of Birmingham, Bristol and Liverpool would be adapted as part of a trial to assess the impact on blind and partially sighted pedestrians.
It will also work with the Royal National Institute of Blind People.
It follows criticism from some quarters about the impact of the quiet e-scooters in trials across the country.
All Voi e-scooters are equipped with a bell, but Voi hopes the humming noise will now automatically alert other road users that an e-scooter is approaching.
However, Sarah Gayton, of the National Federation of the Blind of the UK (NFBUK), said it would be “terrifying” and would not protect blind people.
“It will be terrifying, this being emitted all over the pavement.”
She said if a visually-impaired person heard the noise, they “would probably freeze and stand still but wouldn’t be able to get out of the way”.
Andy Street, West Midlands mayor, welcomed the latest trial in Birmingham, the Local Democracy Reporting Service said.
“It is great to see Voi once again learning from people’s experiences on the road to adapt and change their scheme,” he said.
“The whole point of trialling e-scooters in the West Midlands is to see how best to integrate them into our towns and cities.”
The three-month pilot will run alongside a formal consultation on the use of artificial vehicle alert systems with visual impairment organisations, local authorities and police, Voi said.
But Ms Gayton said: “It’s gone past any mitigation – the trial just needs to end. The riders are literally out of control in Birmingham. It’s just not safe in that city any more.”
Earlier this week, West Midlands Police said it was starting a month-long operation to “tackle riders who break the law and put others at risk”.
The force said the move followed complaints about inappropriate use of e-scooters. Those caught face having it seized or having their accounts to hire one suspended.
Jack Samler, general manager at Voi UK and Ireland, said: “Electric engines on e-scooters, like those on electric cars and buses, are extremely quiet, which can be unnerving to other road users.
“By adding an appropriate sound we can hopefully improve the safety of our operations for all road users, including those who are vulnerable because of sight loss.”
They disappeared more than a year ago and many are still out of sight. When the pandemic hit, 53,000 under-18s in England with disabilities that made them vulnerable to coronavirus began to shield away at home.
Kept off school long after their classmates went back, and away from friends, they have found their childhoods put on hold. And while the vaccine rollout gave high-risk adults some reprieve in the new year, those aged under 16, who have not been eligible for any vaccine, are still living in limbo.
Yet we have barely heard a thing about disabled children’s plight through the coronavirus crisis – a silence that has not been helped by the faux-reassuring narrative that “no healthy child” has died from the virus. And now that the UK regulator has at last approved the Pfizer vaccine for 12- to 15-year-olds, this blind spot is becoming even more glaring.Advertisementhttps://a55a4e2610d50bee315ac7fe10ceddc1.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html
The debate about immunising young people is centred almost exclusively on whether every teenager should be vaccinated in order to ease transmission. Clinically extremely vulnerable (CEV) children, meanwhile – who are desperate for protection themselves – are barely being mentioned.
I’ve spoken to many families with disabled children who have been living in fear over the last year. Parents going to work terrified they will bring the virus home to their child, or even quitting their jobs to protect them. Children who are shielding 24/7 at home, missing classes, socialising and routine activities. Some have had to choose between their education and their health, while others have had no say in it. I’ve heard from parents whose children have effectively been banned from classrooms because their disability means they’re unable to socially distance.
At the same time as missing school, children with disabilities have also had respite care and community schemes pulled; a survey by the Disabled Children’s Partnership found three-quarters of families with special needs had lost out on care and support services during lockdown.
It is hard to imagine politicians and the media greeting this with a similar lack of interest if it was happening to “normal” children. There is much concern about the impact on pupils of missing months of school, and rightly so – but there’s almost no recognition that some disabled pupils have missed an entire year, with no plan as to when they can return.
Disabled pupils are already less likely to get A* to C grades than their non-disabled peers owing to multiple structural barriers. The special educational needs and disabilities (Send) system was “in crisis”, according to the Ombudsman, before the pandemic threatened to push their life chances further back. This is only exacerbated by the fact that families with a disabled child are more likely to be in poverty, so often can’t afford a laptop or broadband for home schooling, let alone the complex disability support their child needs.
Ministers appear to be doing little to help bring disabled pupils back to classes. Even as the Delta variant of Covid spreads in schools, the government has dropped its requirement for secondary pupils to wear masks in class – much to the ire of teaching unions – – while the number of coronavirus tests being done in secondary schools is reportedly decreasing.
It is striking that Britain still has no plans for inoculating high-risk children, while other countries such as the US and parts of Europe have already made significant gains in vaccinating all teenagers. Contact, the UK charity for disabled children and their parents, tells me it is “surprised” that the Joint Committee on Vaccination and Immunisation (JCVI) thinks that “even CEV children are low risk, after they have been asked to shield for many months”. Data from the US shows that nearly a third of teenagers hospitalised with Covid this year required intensive care, and 5% required mechanical ventilation, while children with conditions ranging from congenital heart disease, diabetes, asthma, to sickle cell disease, could be at increased risk for severe illness from the virus.
There has long been concern that Britain’s “age-based” rollout has failed to fully recognise the risk facing disabled young people; at the beginning of the rollout, many younger disabled adults had to wait for a jab while healthy older people were given priority.
The JCVI is currently considering whether to include teenagers in the vaccine rollout, but in doing so it must prioritise the needs of those with disabilities. If it is decided that teenagers aren’t eligible for a vaccine, an exception should be made for any who are clinically vulnerable. If all teenagers are included in the rollout, CEV pupils should be at the front of the queue, just as CEV adults were. There is no reason this cannot be done alongside other priorities, such as giving jabs to children in variant hot spots such as Greater Manchester and urgently donating vaccines to adults in developing nations.
After the hardest of years, children with disabilities and their parents deserve action as soon as possible. Every day treading water is another day where teenagers are struggling at home away from friends and teachers, anxious about how to stay safe. There is one lesson that should not have to be taught: disabled children’s lives are worth just as much as anyone else.
E-Scooters ‘Not Safe’ Without Audible Signals
A visually impaired woman from London says e-scooters are not safe enough to be used across the city as they do not have audible signals.
The signals, which alert pedestrians to the silent e-scooters, will not be installed for at least two months.
Transport for London (TfL) said in May the e-scooters would have audible warning systems that could be used without riders adjusting their grip.
It now says that all e-scooters on the rental scheme are fitted with bells.
The RNIB (Royal National Institute of Blind People) said e-scooters posed potential risks to blind and partially sighted people because “they are fast-moving, difficult to detect, and are often ridden on the pavement despite this being illegal”.
London’s walking and cycling commissioner, Will Norman, said the trial could not be stopped to fit them.
He said: “We can’t stop the trial before everything is brought in because we need to continue to learn and continue to make improvements.
“New features will probably come in over time if and when concerns are raised.”
But Karishma Shah said it was a “massive risk”.
“I don’t think they should have been released without the audible signals or any form of inclusivity because we want to make them as safe as possible, not just for the riders but for every user group – people who use pavements, disabled people, older people, non-disabled people.”
London has become the latest UK city to launch a year-long trial in which e-scooters are available to rent. Riders can rent them in Canary Wharf, Ealing, Hammersmith and Fulham, Kensington and Chelsea and Richmond.
The scooters cannot be ridden on pavements and have been programmed to have a top speed of 12.5mph (20 km/h).
It is illegal to use privately owned e-scooters on public roads, pavements and cycle routes.
Ms Shah, who is from Croydon in south London, said she feared e-scooters as she has almost banged into them in the past.
“I fear things that I cannot hear but that I know are coming really fast and I fear that I have to consciously make so much effort to hear all these things just to carry on living like how a non-disabled person would,” she said.
Transport for London said it would be at least the end of July before audible sensors were installed on the e-scooters.
E-scooter operators, Lime, TIER and Dott – which are involved in the trial – said they could not provide exact dates for audible sensor installation, but that a shortlist of sounds was being tested.
Dott said it would have its first sound file tested in defined laboratory conditions by representatives of RNIB by the end of July but added signalling would not be rolled out immediately as the balance between audible detectability and noise pollution needed to be tested.
The RNIB said: “While having a properly researched and designed safety sound would help with detectability, we also need robust enforcement against pavement riding and parking, adequate off-pavement parking to be provided and the appropriate street infrastructure in place to keep pedestrians safe.”
Disabled People Miss Out On Almost £10M Of ESA
Families whose elderly relatives fell prey to so-called predatory marriages have backed calls for a change in the law.
The practice involves vulnerable adults being led into a marriage which financially benefits their new spouse.
Leeds North East MP Fabian Hamilton says hundreds of families have contacted him since he first raised the issue in Parliament in 2018.
He brought it up once again at Prime Minister’s Questions this week.
Prime Minister Boris Johnson thanked him for highlighting the “injustice” and said he would secure a meeting with the justice department as soon as possible.
‘Secret marriage’
Daphne Franks said her 91-year-old mum Joan Blass, who had dementia, was a victim.
Mrs Blass met Colman Folan, a man 24 years her junior, in 2011, the same year she was diagnosed with dementia.
He moved into her home a month later, but Ms Franks, from Gledhow, Leeds, said it was only when her mother died in 2016 that the family learned they had married.
“None of mum’s friends or family knew about the marriage. It was done in secret,” she said.
While the registrar believed Mrs Blass had the mental capacity to make the decision, Ms Franks said her mother’s dementia was too advanced for this to be the case.
“Mum struggled to remember her date of birth. She had no idea how old she was at her 90th birthday party 18 months earlier and she couldn’t remember her address,” she said.
“Who knows where she thought she was or what she thought she was doing when she got married.”
When Mrs Blass died, Mr Folan inherited all her property and possessions.
Under English law, the marriage revoked her previous will which left everything to her children.
“The secret marriage just destroyed that will as if it had never existed,” Ms Franks said.
“All the personal belongings in the house now belonged to him, including my wedding dress and my grandad’s letters from the first world war.
“It was just heartbreaking.’
The BBC has attempted to contact Mr Folan.
In a previous statement he said: “Mrs Blass wanted to marry me and I believed at the time, and still do, that she has capacity to make that decision for herself.”
Another family said their father was targeted by a “predator whose aim was solely to gain financial benefit”.
Kate, whose name has been changed, said her father, a widower, was vulnerable and taken advantage of when he remarried at the age 77.
She said her father died in 2018 and his wife went on to strip his bank accounts of £200,000.
Both families are backing Labour’s Mr Hamilton in his call for a clamp down on predatory marriages.
In 2018, the MP presented a private members’ bill on the issue to the House of Commons but has yet to meet the Registrar General to discuss changes.
He said: “It’s shocking that someone can be married without knowing the contract they’ve entered into or that they’ve married at all because of the dementia they’re suffering from.
“It’s about time we updated our marriage laws that date back to the 19th century and make sure that vulnerable individuals don’t find themselves in that position ever again.”
A press release:
Edinburgh author Lesley Kelly’s pandemic crime thriller series has been launched in braille for blind and partially sighted readers.
The ‘Health of Strangers’ crime fiction series, set in an alternative Edinburgh struck by a deadly virus, was penned in 2016-2020 prior to the Covid-19 pandemic.
The four novels follow the investigations of the North Edinburgh Health Enforcement Team as they fight to contain a spreading virus, encountering mystery, murder and corruption along the way.
Partnering with the Scottish Braille Press, based in Edinburgh, to produce all the ‘Health of Strangers’ titles in braille, Lesley is delighted that the series will now be even more accessible for blind and partially sighted crime fiction fans who read braille.
Lesley, who is based in Edinburgh and whose first novel, A Fine House in Trinity, was longlisted for the William McIlvanney Prize, said: “I am thrilled that my books are being published in braille for blind and partially sighted readers.
“The series is based on my work experiences in emergency planning, and accurately predicted a number of pandemic issues, including vaccine passports, hoarding, and debates about civil liberties. It also deals with isolation, which may reflect some of the experiences of blind and partially sighted people during lockdown.
“Reading has been a comfort to many people during Covid, and we’ve seen a huge interest in books with contagion themes, from Camus’s The Plague, to Scotland’s own Louise Welsh with her trilogy of virus novels. I hope braille readers enjoy my contribution to pandemic literature.”
The real-life Covid-19 pandemic has further highlighted and compounded the challenges many blind and partially sighted people face in the community, with many experiencing additional challenges such as difficulties with being able to adhere to social distancing and increased social isolation.
Easy and reliable access to accessible formats, including more literature and information available in braille, audio and large print, is essential to ensure blind and partially sighted people have equal access to important information, as well as the joy of reading for pleasure.
The Scottish Braille Press, which is run by sight loss charity Sight Scotland, is a leading provider of accessible media for businesses and individuals and has been producing accessible formats for over 125 years.
Mark O’Donnell, Chief Executive of Sight Scotland, said: “We are so grateful to Lesley Kelly and Sandstone Press for allowing the Scottish Braille Press to transcribe and publish Lesley’s Health of Strangers series in braille, enabling us to give braille readers access to Lesley’s fantastic crime thriller series. It is extremely important for equality, inclusion and personal security that accessible formats, including braille, are easily and readily available to people who require them.”
The Health of Strangers series braille editions are available to buy online at Sightscotland.org.uk through Sight Scotland’s Braille Bookshop, or call 0131 662 4445 to order.
US Approves First New Alzheimer’s Drug In 20 Years
The first new treatment for Alzheimer’s disease for nearly 20 years has been approved by regulators in the United States, paving the way for its use in the UK.
Aducanumab targets the underlying cause of Alzheimer’s, the most common form of dementia, rather than its symptoms.
Charities have welcomed the news of a new therapy for the condition.
But scientists are divided over its potential impact because of uncertainty over the trial results.
At least 100,000 people in the UK with a mild form of the disease could be suitable for the drug if it were to be approved by the UK regulator.
The US Food and Drug Administration (FDA) said there was “substantial evidence that aducanumab reduces amyloid beta plaques in the brain” and that this “is reasonably likely to predict important benefits to patients”.
Controversial trial
In March 2019, late-stage international trials of aducanumab, involving about 3,000 patients, were halted when analysis showed the drug, given as a monthly infusion, was not better at slowing the deterioration of memory and thinking problems than a dummy drug.
But later that year, the US manufacturer Biogen analysed more data and concluded the drug did work, as long as it was given in higher doses. The company also said it significantly slowed cognitive decline.
Aducanumab targets amyloid, a protein that forms abnormal clumps in the brains of people with Alzheimer’s that can damage cells and trigger dementia, including:
- memory and thinking problems
- communication issues
- confusion
‘Heading in right direction’
Aldo Ceresa, who took part in the trial, first noticed problems differentiating between left and right 10 years ago.
After his diagnosis, the 68-year-old, who is originally from Glasgow and now lives in Oxfordshire, close to his family, had to give up his job as a surgeon.
Mr Ceresa took aducanumab for two years before the trial was halted – and then had to wait almost as long for another trial, at the National Hospital for Neurology and Neurosurgery, in London, to begin.
“I’m quite happy to volunteer,” he says.
“I really, really enjoy this journey that I’m going through – and obviously the benefits I’m getting from it, which I’m very, very grateful for.”
He is convinced the drug has helped him.
“I feel like I’m not quite as confused. Although it’s still there, it’s not quite as bad.
“And I’m just getting that bit more confident now.”
Mr Ceresa says his family has noticed improvements too.
“Before, if I was going to get something, I couldn’t remember, you know, where to find things in the kitchen.
“That has become less of a problem,” he says.
“I haven’t caught up to the level that I was before – but I’m heading in the right direction.”
More than 30 million people around the world are thought to have Alzheimer’s, with most aged over 65.
For around 500,000 people affected in the UK, those eligible for aducanumab will be mostly in their 60s or 70s and at an early stage of the disease.
‘Very cautious celebration’
We need to keep our feet on the ground.
This is not a miracle drug, nor a cure for Alzheimer’s but it is the first treatment which tackles the destructive mechanism in the brain that drives the destruction of neurons.
And that makes this a landmark moment.
But scientific opinion both here and the United States is divided. While some have welcomed approval, calling it a milestone for millions living with Alzheimer’s, others believe the drug will only have marginal benefits.
Alzheimer’s charities say they will be pressing for an early decision in the UK – but that could take another year.
Lastly, we don’t know how much aducanumab will cost – it could be tens of thousands of pounds per patient each year. And if approved, access will be limited to those who’ve had specialist brain scans to confirm their diagnosis.
Despite all the caveats, this is moment for very cautious celebration.
Prof Bart De Strooper, director of the UK Dementia Research Institute, said the decision to approve aducanumab marked “a hugely significant milestone” in the search for treatments for Alzheimer’s disease.
In the past decade, more than 100 potential Alzheimer’s treatments have flopped.
But while he hoped it would prove a turning point for millions of people with the condition, he said there were “still many barriers to overcome”.
Prof John Hardy, professor of neuroscience at University College London, said: “We have to be clear that, at best, this is a drug with marginal benefit which will help only very carefully selected patients.”
‘Grave error’
And Prof Robert Howard, professor of old age psychiatry at UCL, went further calling the drug’s approval “a grave error” that could derail the ongoing search for meaningful dementia treatments “for a decade”.
He said the FDA had ignored data from the trial which showed no slowing of decline in cognition or function.
However, Alzheimer’s Society said the drug was “promising” but added it was “just the beginning of the road to new treatments for Alzheimer’s disease”.
Another charity, Alzheimer’s Research UK, said it had written to the Health Secretary Matt Hancock asking the government to prioritise the fast-track approval process for the drug in the UK.
Chief executive Hilary Evans, said: “People with dementia and their families have been waiting far too long for life-changing new treatments.
“It is now essential that regulatory authorities assess the evidence to decide whether they believe the drug is safe and effective for use in the UK.”
Although many doctors are doubtful of aducanumab’s benefits, its US approval could be a huge boost to dementia research, which is traditionally underfunded compared with cancer or heart disease.
Valentina Petrillo could this year become the first openly transgender woman to compete at the Paralympics. For the visually impaired Italian, selection for the national squad would be a dream come true – but she says she understands why other athletes may have doubts and questions about racing against her.
“I’m happy as a woman and running as a woman is all I want. I couldn’t ask for more,” says Valentina Petrillo.
“I’ve got a fire inside me, that pushes me. An emotional strength. Obviously, my body’s not what it was at 20 when I was at my peak, but my happiness pushes me to go further, to go beyond my limits.”
Passionate about running from an early age, Petrillo’s aspirations were seemingly dashed at the age of 14, when she was diagnosed with Stargardt disease, a degenerative eye condition, for which there is no cure.
After finishing school in her hometown of Naples, she moved to Bologna at the age of 20 to study computer science at the Institute for the Blind. Here she took up sport again, becoming a member of Italy’s national five-a-side football team for people with sight loss.
It was only at the age of 41 that she finally started running again, winning 11 national titles in three years in the male T12 category for athletes with visual impairment.
She is now 47, and recognises that this is her last chance to compete at the Paralympics, but she wants to keep running whether she gets to Tokyo or not.
In fact, it was only last September that she ran her first official race as a female para-athlete – at the Italian Paralympics Championship, where she won gold in the 100m, 200m and 400m T12 events.
Growing up in Naples in the 1970s, Petrillo says she was a “streetwise kid” who often got into fist fights.
“I defended my brother who’s three years older than me! Until four years ago, if you’d talked to Fabrizio (the name Petrillo was given at birth), Fabrizio would have given you the idea he was sexist. He was a tough guy who’d speak dismissively of women and then be a woman in his private space.”
She clearly remembers the day when, aged nine, she put on her mother’s skirt for the first time, “It was an incredible emotion. It was like touching heaven with your finger tip,” she says.
But she knew better than to tell anyone; by coincidence, she had a transgender cousin, whom her uncle had thrown out of the house.
And so Valentina continued life, as she puts it, “dressing up as a man”.
She achieved everything society expected of her – good grades at school, a stable job, a wife, a son – but still she wasn’t happy.
There was no triggering event but on 14 July 2017, she realised she could no longer suppress her secret.
“I hadn’t planned it. I was in bed with my wife, about to fall asleep, and I said ‘Remember I told you I once dressed up as a woman?’ She said yes. I said, ‘In reality it wasn’t once, I do it every day.'”
With her wife’s support – after the initial shock – Valentina started living as a woman in 2018, and in January 2019 she began hormone therapy, which affected her physically and emotionally.
“My metabolism has changed. I’m not the energetic person I was. In the first months of transition I put on 10kg, I can’t eat the way I did before, I became anaemic, my haemoglobin is low, I’m always cold, I don’t have the same physical strength, my sleep isn’t what it was, I have mood swings,” she says.
“I’m not the same as before. Fabrizio no longer exists.”
Hormone therapy for trans women is designed to lower testosterone levels and raise oestrogen levels to the typical values in women.
Quantities of both hormones are measured in a unit called a mole. Before starting therapy, Petrillo would have had about 20 nanomoles of testosterone in a litre of her blood (20 billionths of a mole). Since 2015, the International Olympic Committee (IOC) has required female athletes to have less than five nanomoles of testosterone per litre of blood, while most women have fewer than two nanomoles per litre. Petrillo is now consistently well below the two-nanomoles-per-litre level.
Six months after starting treatment she had lost about 11 seconds in the 400m and 2.5 seconds in her speciality, the 200m. But it was a sacrifice she embraced.
“As a sportsperson, to accept that you won’t go as fast as before is difficult. I had to accept this compromise, because it is a compromise, for my happiness.”
It has become Petrillo’s motto: “Better to be a slow happy woman than a fast unhappy man.”
In reality, she is not slow, just slower, as her gold medals in last September’s Italian Paralympics championships attest.
She has also fared well in competition against non-disabled women, some of whom have protested that a trans woman has a major advantage.https://emp.bbc.co.uk/emp/SMPj/2.43.0/iframe.htmlmedia captionValentina Petrillo’s first competition with able-bodied women, in Arezzo, October 2020 ©Ethnos
Fausta Quilleri, a lawyer from Brescia and a runner in the over-35s “Master” category, last month sent a petition to the president of the Italian Athletics Federation and the ministries for Equal Opportunities and Sport challenging Petrillo’s right to compete in women’s races.
“Her physical superiority is so evident as to make competition unfair,” she says, arguing that the IOC’s exclusive focus on testosterone “makes no sense” when physique is also a factor.
More than 30 female Master athletes signed the petition.
“If she wants to run with us we would be happy for her to do so. We will always welcome her but we don’t want her to compete with us for titles,” Quilleri says.
Petrillo was hurt that some of the women at one event refused to be photographed with her, but says she understands their reaction.
“I asked myself, ‘Valentina, if you were a biological woman and had a Valentina, a trans, racing against you, how would you feel?’ And I gave myself answers – astonishment, confusion and doubt. I would have those things as a woman. So I believe these doubts and questions are legitimate.”
However, she defends her right to compete in the women’s category.
“I respect and comply with the IOC and World Athletics rules, I do the tests. I don’t feel like I’m stealing anything from anyone.”
Running with limited vision
- Until recently Petrillo was running in the Paralympic T12 category, where T stands for Track and 12 is one of three groups of visual impairment
- In April she was reclassified as T13 – the group for runners with the least serious visual impairment – and has been competing this week at the European Para Athletics championship in the T13 400m event
- Petrillo sometimes finds it hard to see painted lines on the track, especially after rain – her preference is for white lines on a blue track
- When running against non-disabled runners, it’s a disadvantage being unable to see the finishing line, she says, as she doesn’t know when to make a final lunge
Petrillo is taking part in studies led by Joanna Harper, at the School of Sport, Exercise and Health Sciences at the University of Loughborough in the UK, on the precise effects of hormone therapy on trans women athletes.
A transgender runner herself, Harper has been in the unique position of studying the effects of hormone therapy on athletic performance first hand.
“Transgender women are on average taller, bigger and stronger than cisgender women (women who identify with the sex and gender they were assigned at birth) even after hormone therapy, and those are advantages in many sports,” she says.
But there is another side to it, she points out.
“Transgender women are now powering their larger frames with reduced muscle mass and reduced aerobic capacity and that can lead to disadvantages in terms of things like quickness, recovery and endurance.”
It will take at least 10 more years of research to fully understand the effect of hormone therapy, Harper says. In some sports trans women will need a handicap, she suggests, but how much handicap isn’t yet clear.
“Hormone therapy won’t turn trans women into cis women but the goal, in terms of sports, is to mitigate the advantages that trans women gain by virtue of going through male puberty, to the point where you can have meaningful competition between trans women and cis women.”
Meaningful competition is the key to defining all sporting categories, starting with the division of men and women, says Harper, author of the book Sporting Gender. From tall basketball players to left-handed fencers, acceptable advantage exists in sports all the time. “What we don’t allow is overwhelming advantage, so we don’t let heavyweight boxers get in the ring with flyweight boxers,” she says.
“There are many people who don’t think that trans women should be allowed to compete at all, and then there are many other people who think that trans women should be allowed to compete simply based on gender identity. And I believe in a middle-ground policy, where we allow for inclusion of trans women but have restrictions that are based on the physiology of sport and the biology of sex.”
No openly transgender athlete has yet competed at the Olympics or Paralympics, but this year that looks likely to change. Weightlifter Laurel Hubbard, a trans woman like Petrillo, is in contention for a place in New Zealand’s Olympic squad. Canadian Ness Murby, who competed in discus throw at the 2016 Paralympics, also recently came out as a trans man, and has been selected for the Tokyo games.
An article by Outsports names other trans women hoping to compete at the Olympics, but Petrillo is the only potential trans woman Paralympian mentioned.
She describes her life today as a visually impaired transgender athlete as an arduous journey that is far from over, but she is keen to share her story.
“I think my example is positive, of a trans person who does a sport they love,” she says. “Maybe if I’d seen a Valentina on TV when I was an adolescent, my choices would have been different.”
This is why she agreed to have her story fully documented on film – 5 Nanomoles: The Olympic dream of a trans woman will be released next year. She says making the documentary has helped her to get through some of the darkest moments of her journey, and surprised her too.
“Valentina is enjoying making this film! She really is and I’d never have imagined it. This is another thing that Fabrizio would never have done: Fabrizio would never have spoken on TV, or given interviews, or put himself out there. But Valentina does.”
Parkinsons, AI And Rory Cellan-Jones
For two weeks recently I got into a steady routine. At 10:30 each morning, I would sit at my kitchen table, strap three devices containing sensors to my right arm, and switch on a tablet computer. Then I would spend 20 minutes going through a series of exercises monitored by a man who popped up in a window on the screen.
The results of my endeavours will, I hope, help millions of people like me dealing with Parkinson’s disease.
My daily routine was part of a medical trial run by engineers from Imperial College and a start-up company they have founded, in collaboration with a consultant neurologist at London’s Charing Cross Hospital. Its aim – to use artificial intelligence techniques to develop a wearable device that could monitor the symptoms of Parkinson’s disease and even perhaps help to treat it.
For me that is an exciting prospect. I was diagnosed with Parkinson’s in January 2019 and the first thing I was told was that there is no cure for this disease which afflicts something like 10 million people and is the world’s fastest growing neurological condition.
‘Notoriously difficult’
There is medication to treat the symptoms but it is notoriously difficult to prescribe exactly the right dose of Sinemet and other drugs which act to replace the missing dopamine that makes someone with Parkinson’s shake or drag their foot. In my case, it was not clear to me that the drugs were working.
That is how I ended up being sent by my own consultant at St Mary’s Hospital Paddington for a second opinion from Dr Yen Tai, the neurologist at Charing Cross working with Imperial College. After he had prescribed me a new drug, we got talking about technology and how it might help in the battle against Parkinson’s. When he offered to enrol me in the Imperial trial, I leaped at the chance.
The exercises I did each morning – twisting my hand from side to side, holding it out in front of me, moving my arm up and down – were similar to what my consultant makes me do on my visits every four months. The idea is that the data recorded by the sensors and the video of the session will gradually teach the AI system how to grade symptoms in the way a human doctor does.
Neurologists use what’s called the UPDRS – the Unified Parkinson’s Disease Rating Score – to calibrate the severity of a patient’s symptoms. Earlier in the trial, other patients of Dr Tai had been assessed by him at his clinic, and his UPDRS ratings were then fed into the AI system as part of its learning data.
Ravi Vaidyanathan, reader in biomechanics at Imperial College and principal investigator for this research programme, laughed when I said the aim seemed to be to take Dr Tai’s brain and put it in the AI. “We are a few light years from being able to take what Yen’s brain can do,” he said.” But we are trying to take his diagnostic capacity into the automated system. And that’s how machine learning works.”
The Imperial team is not alone in exploring how wearable devices could be used to diagnose and monitor Parkinson’s. “Wearable sensors are quite a popular hot topic in Parkinson’s research for a number of years now,” says Dr Tai. A team at Apple, working with medical specialists, showed how the Apple Watch could be used to monitor symptoms and measure their response to medication.
But the Imperial team believes their trial goes further than any other in collecting data about all of the main Parkinson’s symptoms – stiffness of the limbs, tremor and slowness of movement.
What is exciting is what comes next. Later this year, SERG Technologies, the spinout from Imperial working to commercialise this research, hopes to have something much less clunky – “a nice, lean simple device,” says Ravi Vaidyanathan.
‘Tailored treatment’
“At first this could be used once more to put patients through various exercises to assess their symptoms but later the idea is that it could just collect data as people went about their daily lives.
“So when you just pick up a cup of coffee, when you pick up a pencil, when you pick up a pen, we would have something that you could wear unobtrusively all day that would keep recording what you are doing.”
Coupled with data about when a patient takes their medicine, the smart device could then provide continuous monitoring of how a patient responded. “Hopefully this will provide a more personalised, more tailored treatment to an individual patient,” says Dr Tai.
Further ahead, the wearable device could actually provide treatment. A new project supported by a £1m grant from the National Institute of Health Research, will explore shooting tiny amounts of current into the patient’s muscle to control tremors.
For all the work being done here and around the world to improve the monitoring and treatment of Parkinson’s, there is still no cure on the horizon.
“Ultimately we still need to have something that can slow down the brain degeneration process,” Dr Tai says. “But it doesn’t mean we can’t optimise treatment at the same time while we are trying to find a cure for Parkinson’s.”
I hope to continue on this journey seeking a better understanding and improved treatment of Parkinson’s. I will report back on any progress.
A press release:
Produced by Camilla Arnold and Sophie Allen for Flashing Lights Media
Executive Producer- Mark Rickards
A five-part series of essays that explores what it is like to be deaf in 21st century Britain. Each essayist has their own personal experience and take on what being part of the deaf community means to them. Some share the little-known divisions and politics of the deaf community and others share what makes the community so special and unique to the point where some deaf people consider themselves as a linguistic minority rather than disabled.
In a special approach to the usual format of the Essays on BBC Radio 3, three of the episodes are voiced by actors, while two of them are written and read in first person.
This series of essays is produced by Flashing Lights Media, a deaf-led television production company that aims to bridge the gap between the deaf community and the mainstream to break down cultural stereotypes and encourages new perspectives on the world around us.
Monday 14 June
Written by Abigail Gorman
Voiced by Natalia Campbell
Proud activist, Abigail Gorman, takes a personal look at what it means to be deaf when most of society would prefer you not to be. She shares what it was like growing up in a deaf family who were proud of their deaf identity but why she struggled to embrace her deafness for a long time. Abigail tells us of the arguments she had with her Mum when she first decided to get a cochlear implant- her Mum saw getting a cochlear implant as a rejection of the deaf community- and how she has finally come to terms with her deaf identity while learning more about a concept called audism- which explores the different approaches in the deaf community between people who strive to hear language and use speech and those who are deaf and use sign language. Abigail ends the essay on why she is now proud to be deaf and how the deaf community is a linguistic minority. She affirms her new-found belief that deafness is not a disability but a cultural identity.
Tuesday 15 June
Written by Robert Adam
Voiced by Ian Drysdale
Australian born academic Robert Adam takes us on a nostalgic journey through his early childhood and shares what it was like growing up in a family with deaf parents and siblings. He explores the dichotomy of writing an essay for a medium that he’s never had access to- radio. Within this exploration, Robert also considers what his voice might sound like if he could hear and speak. Robert takes us on a trip down memory lane as he shares his childhood memories of realising that not everyone in the world were deaf, the mystery of how telephones work and his fond memories of the ‘Deaf Club’ that was the centre of the deaf community. He ends the essay on the thought that when people think of being deaf as an isolating disability, they are not taking into account the rich, diverse and rounded cultural life that Robert and other members of the deaf community experience. .
Wednesday 16 June
Written and read by Teresa Garratty
Filmmaker Teresa Garratty gives us a frank and honest insight into what it was like to lose her hearing at the age of 18 and how she had to learn “how to be deaf”. There was no manual that she could read, no tutorial on You Tube with tips on how to cope with hearing loss. She discusses how her family and friends would express concerns about her getting involved in “that deaf world” as they saw the deaf community and its culture as alien. Teresa decided to learn sign language so that she could join the deaf community,however, she reveals how then she realised that sign language can be perceived differently within the deaf community. Sign Language can be like currency- sometimes it’s the case of the more fluency you have the wealthier and more respected you become.
Thursday 17 June
Written by Sannah Gulamani
Voiced by Kaajel Patel
Sannah Gulamani, a Research Assistant at University College London, shares with us how the existence of deafness can actually be seen as a positive, and not a negative because of inventions such as subtitles and video calls. Sannah, because of navigating through a world of ‘can’ts’, decided to study music at university. But her love of music is often questioned by those who believe that music is preserved for those with a ‘good ear’. Sannah delves in deeper to discuss how her intersectional identities are often misunderstood, and what identity means in terms of belonging. Within this exploration, she examines her interest in the linguists of British Sign Language and what propelled the career shift from music to sign language linguistics. Finally, Sannah explores whether it can be claimed that the deaf community is a space that is welcoming and safe for all deaf individuals? She looks into how racist and offensive signs are still being used as a result of white fragility and privilege.
Friday 18 June
Written and read by Sandy Deo
Sign Language Interpreter Sandy Deo brings a different experience to the Essay series, as she looks back at her cultural heritage and considers the realities, privileges and responsibilities of growing up as a child of a deaf adult – while not being deaf herself. She talks frankly about how she knew council and banking details from a young age because she had to interpret for her Mum but how this was an advantage as it meant that she was reading Matilda at the age of six. Sandy tells us of funny anecdotes where she and her siblings would take advantage of having a deaf Mum but also talks honestly about the realities of having to interpret for her Mum at family events as other members didn’t know how to sign and how being her Mum’s ears means she now can’t sleep deeply because of years of training to listen out for any odd noises in the house. But Sandy ends the essay on how being a child of a deaf parent is an identity that she’ll proudly own as the experience has instilled in her a drive to fight for, and to stand up for those who perhaps need a louder voice.
For Carers Week, Revitalise highlight the importance of the nation’s carers as they transition out of pandemic
A press release:
This Monday 7th June marks the start of Carers Week 2021, a week dedicated to raising awareness of the extraordinary efforts and many challenges facing carers every day around the United Kingdom. Respite care providers Revitalise would like to highlight the fantastic work they do looking after the nation’s most vulnerable people.
There were 9.1m family carers in the UK at the start of lockdown, and it is estimated that a further 4.5 million have taken on caring responsibilities since the COVID-19 pandemic. Many are solely responsible for the wellbeing of a loved one who may rely on them completely, sometimes 24/7, without any form of break. During lockdown, Revitalise received calls from carers in desperate situations, some talking of self-harm, an inability to cope, and even suicide.
Revitalise CEO Jan Tregelles said: “The nation’s carers perform such a vital role in keeping the country running, saving the NHS millions every year and go far beyond the call of duty to provide for some of the country’s most vulnerable people. We owe them a debt of gratitude.
“We would like the carers of this country to know that Revitalise are here to give you a warm welcome at our centre, should you need a break or change of scenery.”
Whilst caring can be a hugely rewarding experience, many carers often find it challenging to find time to look after themselves. Hilary cares for her son, Shaun, who is brain damaged after an accident in Ibiza when he was 19:
“There’s no let up, no way forward, no support. It’s just…everything. I really need a break, for my mental health. It just feels like hotels and restaurants are opening up, but disabled people are left to the last, at the bottom of the pile.
I’m never, ever, going to give up on my son. Life is too short you know; you need to keep fighting.”
Tracy, cares for her son, Conor, who was born with Cerebral Palsy Quadriplegia with learning difficulties. She said:
“I am just drained physically. It’s a terrible feeling waking up and being tired. I’d like to see the Government live in my shoes for a week. I’m older now and I need a break, and Conor needs a break from me also, he doesn’t want to be wrapped round me. But also I’m no good when I’m exhausted.”
One recent Revitalise guest, Lani, stayed at Sandpipers during lockdown and described her time at the centre.
Lani said:
“Thank you so much for saving me. At home, I was lonely, stressed and depressed. I thought Sandpipers would be just what I needed and it was. The beautiful surroundings, late night talks, laughing until I cried all just about made lockdown bearable.”
During the pandemic, Revitalise launched their ‘Care for Carers’ campaign, with a fundraising initiative to raise £1 million to build a support fund for disabled people and their carers as they transition out of lockdown. The charity succeeded with help from members of the public and actors Rory Kinnear and Joanna Lumley.
Revitalise would like the nation’s disabled people and carers to know that the charity are able to offer specialised, round the clock care from their Sandpipers centre in Southport, Merseyside, for anyone who feels that they need a break.
To enquire about respite care support, please visit revitalise.org.uk To show your support for Revitalise and help them to provide subsidised care breaks during the pandemic, please go to: revitalise.org.uk/donate
Tables blocking the road. Chairs over flat curbs. Gazebos built on accessible parking. The surge in street dining since lockdown eased in England has been great for businesses, but not so much for wheelchair users and people with mobility conditions, who report being unable to get around their home towns due to the new blockages.
Many of these people have been stuck indoors for up to a year shielding, and on their first taste of freedom are now being blocked from getting to the shops or pub. “All I want to do is go and meet my friends and have a pint,” said Katie Pennick, a campaigner and wheelchair user, recently on BBC Radio 4. It’s not your typical civil rights slogan but it characterises the crunch of so much disability politics: disabled people deserve the right to have a life like everyone else.
This sort of thoughtless planningwould be frustrating at any time, but it is all the more so as we come out of a period when disability inclusion was finally given attention. At the start of the first lockdown, I reported that society was opening up to millions of disabled and chronically ill people as “virtual living” became the norm – from Zoom job interviews and streamed gigs and theatre to NHS phone appointments. But just as it took the non-disabled public to experience a dose of what disabled people have for years before access was improved, the fear is that any gains made during the pandemic will be discarded now that the wider public no longer need them themselves.
Take work for example. The shift to working at home over the past year brought new opportunities to those previously excluded from the workforce. As one woman with agoraphobia told me: “Lockdown has opened my world” – it allowed her to get a job from her front room. But as ministers and some employers push for a return to the office, many disabled workers are worried their hard-won progress will go backwards.A research scientist with endometriosis and IBS told me her employer has already stopped letting her work from home full-time, even though her job can be done remotely. “The office is ‘going back to normal’ and they don’t want us at home even though I can do a better job [here],” she said.Advertisement
The disability employment gap in the UK is vast – in 2020, the employment rate for disabled people was just 53.7%, compared with 82% for non-disabled people – and has been largely stagnant for years. Retaining flexible working is one way to address it.Such working patterns will help many others beyond disabled workers, from working parents to carers of elderly parents. Rather than being reduced in coming months, these schemes should be extended; a survey by the Chartered Institute of Personnel and Development found that almost half of workers currently don’t have flexible working arrangements such as flexitime, part-time hours or job shares.
Or look at socialising. The Zoom pub quiz became a cliche of lockdown, but what many of us did informally with friends was also replicated by companies, with art exhibitions streaming online or bars running virtual club nights. As venues open back up, I’m hearing from scores of disabled people losing out: from the parishioner whose church’s Zoom coffee morning allowed her to speak to people from her congregation for the first time in 15 years but which has now been stopped, to the person who “went” to an LGBTQ+ club night for the first time in their life when it went online during lockdown but has now watched it close.Covid made politicians look at our miserly benefits. But is £20 the best they can do?
Too often, cultural prejudice around disability assumes disabled people don’t need the same pleasures as everyone else, but health doesn’t change who you are. As one music-loving young housebound woman shared on Twitter: “Magically, over the past year I’ve seen countless live gigs and the thought of that being taken away is devastating.”
It doesn’t have to be this way. The Young Vic theatre in London announced in May that it plans to livestream all of its future productions, and gym companies say online workouts are here to stay, despite the popular return of “in person” classes. This doesn’t mean good access is about moving everything online: many disabled people want face-to-face settings, and besides, the surge in virtual experiences shouldn’t let businesses off the hook from adapting physical spaces which are still too often inaccessible. It simply means that it is right to keep the option, and that we need a culture in which companies think about disabled people – and our cash – as valuable.
As we rightly celebrate a return to normal, it should be remembered that, for disabled people, “normal” too often means being excluded from everyday life. Anyone who has felt the pang of missing nights with mates in the pub over the past year can empathise and support disabled people being restricted and isolated now. If you spot a restaurant blocking a wheelchair entrance, tweet a photo and tag your local council. If your employer is rolling back flexible working rights, talk to your union (or join one).
Attempts to gain access for disabled people are often met with pushback: it’s too much trouble, too expensive or simply unnecessary. And yet lockdown showed that sweeping changes can be made practically overnight with little fuss. The question is, if it was done for non-disabled people then, why not disabled people now?
With many thanks to Benefits And Work.
A DWP minister has indicated that face-to-face assessments will once again become the norm for both PIP and the WCA, though there will continue to be some telephone and video and assessments.
Justin Tomlinson, minister for disability, health and work told the commons work and pensions committee earlier this month that the pandemic had a severe effect on assessments, beginning with the closure of assessment centres.
First of all, we had to close down all our assessment centres. We then had to scale up telephone and video assessments, which we have never done before and, but for Covid, would have only been looking to discuss them in the Green Paper, let alone do a pilot. We then had to roll this out nationwide, literally in days. Again, we were using our stakeholders to let us know whether it was working. So far there has been very positive feedback.
A large number of assessors then moved on to COVID related jobs.
We also lost our health professionals. They all have at least two years’ health professional background so were at the front of the queue for the NHS’s rallying of secondment for Test and Trace, the vaccination roll-out and the immediate support in hospitals when there were the high levels of Covid infections in hospitals. That impacted massively on our capacity.
However, Tomlinson says that the system is now returning to normality, with WCA assessments resuming and face to face assessments returning for both the WCA and PIP.
As issues like this came up, we were able to respond and we are returning to normality on capacity issues. The WCA assessments will begin shortly and start to be scaled back up, as in face to face, and PIP will follow a few weeks later. However, we will keep video and telephone assessments. Through the health and disability Green Paper, we will explore to what extent and where they are best to be used.
It is not clear what proportion of assessments will continue to be by telephone and how many will be face to face, though we have yet to hear from anyone who has had a video assessment, so it is likely that these are likely to form a very small proportion of assessments at this stage.
Tetraplegic Steven Webb Is Elected Mayor Of Truro
One night when he was 18, Steven Webb dived into an open air swimming pool and his life changed forever. He hit his head on the bottom of the pool and was paralysed from the neck down. Now aged 48, he has been elected mayor of his home city. This is his journey from rock bottom to a place where he hopes to help others, as told to Miles Davis.
It was a Sunday night, 1 September 1991. I know it was 10:31 because I looked at my watch just before I dived into the pool.
It was an open air pool at Truro School. We were trespassing but we’d done it lots of times before.
I dived in off the top of the wall at the deep end like I had done many times. This time I hit the bottom with my head and a massive shock went through my body.
I tried to swim to the surface but I couldn’t move my arms. I couldn’t swim anywhere. I started to run out of breath and panicked then my friends swam down and pulled me to the surface.
‘I’ll never walk again’
I had broken my fifth cervical bone and it went right through my spinal cord. I spent 12 months in hospital.
I had to have a tube in my throat but it went badly and meant I couldn’t speak for several months.
I could only communicate through tapping – once for yes, twice for no.
I knew I was paralysed but still thought I would walk out of there.
Then the doctors came and said I would probably never walk again. They were telling me how complicated my life was going to become.
I came home to a different life. It ages you, I suppose, spiritually.
Much of my life I subconsciously had so much shame about my accident.
I was a dumb-ass who dived off a wall – I created my disability.
People said I was a hero and an inspiration but I felt like an idiot.
Now I realise what’s important is not what happens to you, it’s what you do with it.
People often say to me: “Imagine what you would have achieved if you hadn’t broken your neck.”
The question makes me laugh. I broke my neck and there is no alternative.
I wouldn’t spend any time thinking of a rose-tinted version of a better life.
‘Single and paralysed’
I met my then partner Emma in my late 20s and she moved in with her four-year-old daughter, Kember.
We were together for about 10 years and after we ended I met someone else.
But that went wrong suddenly, without warning, just before I turned 40.
I ended up sitting in a shop doorway with my wheelchair broken down and I realised my life was on a downward spiral.
There I was – single, no money and paralysed.
I was drinking every night to get to sleep because my brain just wouldn’t stop.
I could see where I was headed to and it wasn’t a place I wanted to go.
‘Then I started to read’
When I was at rock bottom I had a dark night of the soul and realised I was just existing.
People think being paralysed is the worst thing in life but there is nothing worse than having nothing to live for. Being asleep was the only time when I wasn’t suffering.
One night I started to read. I read ‘As a Man Thinketh’ by James Allen. Then instead of the drink I fell asleep reading.
I started meditating and saw my thoughts as transient, non-permanent and not me. That was the beginning of the end of my suffering.
I realised I needed to help others not to suffer and I started doing Facebook live sessions to help people to meditate.
‘That gave me the courage’
I have always had an interest in politics and had been a Liberal Democrat since I was a teenager.
In 2017 the party asked me if I would stand for Truro City Council and I got elected.
A few weeks ago I was unanimously voted in as mayor and that gave me the courage to say ‘I can do this.’
So here I am, mayor – it’s an incredible honour and an amazing opportunity.
I chose Kember as mayoress as she has always been hugely supportive of me and I’m very proud of her.
We’re very, very close and she took my surname about 10 years ago.
‘Rebuild together’
I’m trying to work out how to use my platform to help others to suffer less.
In a time where clinically vulnerable people have had to isolate for so long, I see it as an opportunity to make sure there are no groups left behind and we rebuild from the pandemic together.
There are so many people who have self-isolated and have hardly left their flats.
We’ve got to make sure everybody is included – that will help businesses, that will help Truro and that will reduce suffering.
It’s time we had a vision to keep the amazing heritage of cobbled streets and granite pavements but make it open to everybody.
I’m now able to contribute to that as the mayor. Boy, do I feel alive right now.
If you are looking for advice about disability, the BBC’s Action Line has a few pages to start you on your journey.
A man who appealed for Yorkshire voices to replace his American-sounding speech aid has spoken with his new accent.
Richie Cottingham, who has cerebral palsy, asked people to come forward to add their voices to his computer.
More than 35 people recorded their voices for the 26-year-old, who lives near Howden, East Yorkshire, with three chosen accents being blended together.
Speaking in his new accent, he said he had cried when he first used the voice, adding: “Now I am a Yorkshireman”.
Mr Cottingham launched his appeal earlier this year, hoping to find men in their early-20s with a subtle East Yorkshire accent.
He said he wanted to have his own voice after his speech aid “sounded American”. He said: “A generic voice is not my identity.”
Using his new accent, he added: “It feels awesome and I love it.
“Everyone has been really excited. I think it will take people time to get used to hearing the new me.”
‘Happy tears’
Jake Thompson, who recorded his voice for Mr Cottingham to consider, said he wanted to help out because it would be “a lovely thing to do”.
He added: “It’s something we all take for granted to speak and all have our own accents and voices.”
Mr Cottingham thanked the dozens of people who came forward to volunteer their voices before using a mix of three people to create his own, unique accent.
“It made me cry on Tuesday when I heard it for the first time. Many happy tears,” he added.
Gene Therapy Is A Game Changer For SMA
Baby Arthur is just five months old. He has no way of knowing the treatment he is receiving in his right arm is the world’s most costly medicine.
He has a devastating progressive disorder that causes loss of muscle control – but has become one of the first patients to be treated on the NHS with Zolgensma, a gene therapy.
Around 40 children are born with the most severe form of Spinal Muscular Atrophy (SMA) every year.
Untreated, they rarely live beyond two.
Zolgensma, manufactured by Novartis Gene Therapies, has a list price of £1.795m.
But the NHS has negotiated a confidential discount which means dozens of infants can be treated each year.
Arthur, from south-east London, finds it difficult to move his arms and legs and cannot lift his head, so some permanent damage has already been done.
The hope is the one-off treatment will stabilise his condition and prevent further deterioration.
His father, Reece Morgan, says there have been many ups and downs.
“Our hope is that he can have the best possible life in terms of his movement,” he says. “We don’t know, but we’re just going to try as best as we can to give him everything he possibly needs.”
So how does Zolgensma work ?
The drug contains a healthy copy of a missing or faulty gene called SMN1.
This is inserted into a harmless virus.
In the body, the virus delivers the replacement gene into the nucleus of motor neuron cells.
This is essential to prevent the cells from gradually dying.
The now healthy motor neuron cells start producing the missing SMN protein which is vital for muscle function.
‘Hugely important step’
Evelina Children’s Hospital, where Arthur is being treated, is one of a handful of centres which will be offering Zolgensma.
Dr Elizabeth Wraige, a consultant paediatric neurologist at the hospital, explains that this treatment can really alter the outlook for these children.
“Twenty years ago a baby born with SMA would have a very shortened life expectancy, ” she tells the BBC.
“Now, we have the potential to enable children to acquire motor skills such as rolling and sitting and even standing walking, that would have been impossible without treatment for SMA.”
NHS England chief executive Sir Simon Stevens says it is “fantastic news that this revolutionary treatment is now available for babies and children like Arthur on the NHS”.
He adds that Zolgensma is among the “life-changing therapies” being “routinely” used by the health service.
Sally-Anne Tsangarides, general manager at Novartis Gene Therapies in the UK, calls it a “hugely important step for babies in England”.
“We thank all those who have been involved in the landmark agreement that has made it possible,” she says.
Despite the high list price, both NICE and the Scottish Medicines Consortium recommended the NHS fund the treatment.
Trials have shown it produces lasting benefits, which endure at least five years, and perhaps will prove to be permanent.
The only other treatment for SMA involves costly spinal infusions which need to be given at least three times a year.
‘It saved her life’
Tora, from south-west London, first displayed symptoms when she was around three months old – struggling to lift her head when lying on her tummy.
By the time Tora began treatment with Zolgensma in the US when she was 10 months old, her mum, Taisya Usova, says she was floppy and didn’t have any mobility.
“She couldn’t do the basic things. She couldn’t reach for a toy, which was five centimetres away. We couldn’t leave her alone, Even on the sofa, where she was all surrounded by cushions and pillows because everything was too dangerous,” she says. “We couldn’t relax for a second, and she couldn’t enjoy her life.”
Now aged two years and eight months, Tora is an inquisitive little girl who speaks three languages and can walk a little with the help of her parents.
“If she’s just sitting on the sofa you would never notice that something is not quite right,” Taisya explains.
“It saved her life, and basically she now has a chance to enjoy her life and to do things that are so basic and simple for any other child but for her it would be absolutely impossible. To go to the playground, to go on a swing, or to hold and read a book.”
Rajdeep Patgiri, Tora’s Dad, says the family now feels positive.
“Before we were afraid of what the next day would bring,” he says. “We were always afraid that she would lose some skills – deteriorate in her swallowing, in her breathing. Now we look forward with optimism that tomorrow something good will happen.”
How common is SMA?
Around one in 50 people carry the faulty gene for SMA, and the condition affects approximately one in every 10,000 births.
It is the most common genetic cause of death in childhood.
SMA is a condition where the clock is ticking from the moment a baby is born. Every week that passes where they are untreated, risks further damage to the nerve fibres and can make the difference between a child being able to walk or run or sit unaided.
It is usually spotted when babies are around three months old and they start failing to meet the usual milestones like kicking their legs or holding their heads up.
But by then, permanent damage will have been done to motor neuron cells.
For families who have already had an affected child, prenatal screening is offered.
This has enabled babies to be given Zolgensma within a few days of birth, long before symptoms appear.
This can mean their muscles develop normally and they suffer no movement problems.
UK must ‘catch up’
Patient groups and doctors treating SMA want the condition to be added to the newborn screening programme. All babies are given a heel prick blood test which can pick up nine conditions like sickle cell disease and cystic fibrosis.
“We need newborn screening for SMA to be introduced in the UK so that our children have this opportunity for their futures,” charity SMA UK tells the BBC.
“The earlier Zolgensma is given for SMA the better, with pre-symptomatic treatment shown to give the very best possible outcomes. Early diagnosis and treatment is vital.”
Nickie Aiken, Conservative MP for the Cities of London and Westminster says the UK is lagging behind many of our European neighbours and the world.
“It’s a disgrace. Our newborn screening programme needs to expand and catch up urgently with the likes of Poland, Hungary and America so that we can identify diseases early and our children get the treatment they need. We have the means to test for these conditions and we have the treatments – by not screening for them we are doing wrong by our children, and they risk becoming the sick children of Europe.”
Fewer Disability Assessments, More Recordings, More Free Advocacy On The Way, Minister Claims
With many thanks to Benefits And Work.
A government minister has claimed that in the future there will be fewer and shorter assessments for disability benefits, more access to specialist assessors, audio recording of all assessments, more mandatory reconsideration success for claimants and more access to free advocacy services.
DWP minister Justin Tomlinson, gave evidence to the Commons Work and Pensions committee earlier this month.
Fewer assessments
He told them that “as part of the health and disability Green Paper, we want to explore the principle of removing unnecessary assessments.”
One way of doing this, he explained, would be to ensure that where a claimant gets an award from a tribunal, the length of their award should be extended to take into account the fact that the tribunal had access to recent evidence. At present, it can take so long to get to a hearing that claimants can find themselves filling out a review form shortly after a tribunal victory.
In addition, Tomlinson talked about ‘triaging’ as a way of reducing the number of full assessments that some claimants have to endure.
There is also the principle of triaging. Pre-Covid, if I had received your written evidence at the beginning, then I could be 95% certain of what award I am going to give you or what level of support, but because I am missing 5% the only option to me was to trigger a full assessment. During Covid, because we had such limited capacity, we then started doing triaging where we said, “We know 95%, so let us now have a telephone assessment, or even just a telephone conversation, to get that final 5%.” In my preconsultation, triaging is very popular with stakeholders. It is also very popular with assessors, who say, “There is nothing more soul destroying than knowing I have to ask 55 questions, which I already know the answers to, to get to the very last question at the end of this one-hour assessment.”
Telephone and video assessments to stay
Tomlinson said that telephone and video assessment are likely to be here to stay.
We then rolled forward the telephone and video assessments. We are very encouraged by how they have been received by claimants and we will be exploring further in the Green Paper how they can become a permanent part of the mix of assessment options. Certainly, they will continue as we return to normality.
Specialist assessors
He claimed that one advantage of being able to have telephone and video assessments as well as face-to-face is that it would be possible to have specialist assessors carry out the assessment for people with some conditions:
“. . . by having a menu of telephone and video assessments, we can explore, for the first time, having more specialist assessors. If you are not physically restricted to your nearby physical assessment centre, then we may be able to explore, for some conditions, a more specialist type of assessment.”
Mandatory reconsideration successes
The minister claimed that phone calls to claimants at the mandatory reconsideration stage had led to an increase in the number of decisions being changed in favour of claimants from 21% up to 44%.
We have also brought in holistic decision making at the monetary consideration stage, where for the first time—and again this goes to the core of trust—we will phone a claimant and say, “Tell us in your own words why you think we have made the wrong decision.” Sometimes that is enough, and sometimes that identifies what will ultimately be the additional evidence that is needed and we then help them gather that. To put this into context, making these changes about six months before Covid, 21% of decisions were overturned at appeal at the monetary consideration stage. That had moved up to around 44%. With Covid—we are not in normal circumstances—as we return to normality, I expect that to go higher yet.
Free advocacy
In spite of the massive cuts to support for the voluntary sector and to legal aid, Tomlinson claims to be in favour of more access to free advocacy. He points out that some people already have friends, family or charities that can advocate for them, but goes on to say:
There is also a “other” cohort of people who may not have advocacy support. It could be somebody with health or disability but, for example, if you are an ex-offender, if you are a care leaver into a new community, you do not necessarily have established advocate support. Can we evolve the help-to-claim scheme? We currently provide about £42 million a year to Citizens Advice as a trusted independent agency. Can we evolve that scheme so that they can provide that advocacy support? That can help in the application processes, explaining the system.
Recording assessments
The idea that all assessments should be recorded as a matter of course appears to be gaining ground, if the minister is to be believed.
We are committed to providing audio recording, as a given. At the moment you can get it but you have to bring your own equipment and provide a copy for somebody else. We also had a stakeholder request for video recording. We piloted that and it transpired that almost nobody wanted it. It is likely that it will be audio. We have also, because of the telephone and video assessments, started to do some audio recording on that. Our plan is that audio recording will become a given because, you are absolutely right, when you are reviewing a decision, to have that to go back to is helpful for claimants and the people doing the review
Too good to be true
If everything the minister is promising comes to pass then it should lead to at least a small level of improvement for claimants of disability benefits.
But we have heard talk like this before. So, we suspect many claimants will wait to see what the green paper says and, much more importantly, what the government actually does, before they start throwing their hats in the air.
Model’s Call For Bowel Illnesses To Be NHS Priority
A woman who nearly died when her Crohn’s disease was misdiagnosed as anorexia is calling for bowel illnesses to be made an NHS priority as cases rise.
Natalie-Amber Freegard, 29, said her GP was convinced her weight loss was due to an eating disorder until she collapsed in 2017.
Her parents were told to prepare for the worst as she went blind, had sepsis and kidney failure.
NHS England has been asked to comment.
A recent report by IBD UK suggests a lack of resources and late diagnosis is putting patients at risk and costing the NHS millions.
Ms Freegard, from Swindon, said: “If doctors even suspect it, they need to give us that colonoscopy straight away because it can be the difference between life and death.
“The fact that they’re still managing to misdiagnose people is not okay.”
The model said she had requested to be tested for Crohn’s as her cousin also has the disease.
It was only after being admitted to Great Western Hospital in Swindon in 2017 and undergoing two emergency surgeries in two days that she was diagnosed.
“My parents were told I wasn’t going to make it,” she recalled.
She ended up with a stoma, which was removed a year later.
Now she is joining calls from 17 national medical associations for faster diagnosis of the chronic illness.
Professor Bhupinder Sandhu, a consultant paediatrician and gastroenterologist at Bristol Children’s Hospital, told the BBC cases of inflammatory bowel disease in children have tripled in 20 years in the South West.
She said: “It’s a big burden for young people particularly and if they’re not caught early they can suffer.”
Half a million people in Britain live with Crohn’s disease or ulcerative colitis, life-long autoimmune diseases which affect the colon.
The national research from IBD UK, a coalition of leading health specialists in Crohn’s and colitis care, showed many patients are waiting more than a year for their diagnosis.
Ms Freegard now raises awareness of people living with IBD, modelling her scars with pride with an agency celebrating people with visible differences and on her own Instagram page.
“It’s nothing to be ashamed of”, she said.
“A lot of young people are so embarrassed because it’s poo.
“But we all poo, it shouldn’t be a taboo subject. We need to break that stigma of thinking it’s something to be embarrassed about.”
Sarah Sleet, CEO at Crohn’s and Colitis UK and chairwoman of IBD UK, said: “Crohn’s and colitis are serious conditions which aren’t taken seriously.
“They cost the NHS as much as cancer and heart disease for each patient, and can be as devastating, but they lag behind in the recognition and support needed to improve lives.”
Rising case numbers
Prof Sandhu, who is a co-founder of the British Society of Paediatric Gastroenterology, Hepatology and Nutrition, said more resources are urgently needed to keep up with the rising case numbers.
She said: “It needs to be centrally funded so there’s allocated money.
“It’s an increasing problem and there’s no allowance made for that so centres are having to cope with the extra numbers without any extra funding.”
Ms Freegard said the situation had been exacerbated by the coronavirus pandemic.
Many IBD patients take immunosuppressant medication and have had to shield for the past 18 months.
“Flare-ups can be (brought on) through stress and we’re being told as IBD patients we can’t do this, we can’t do that. The pandemic has made it a lot worse,” she said.
“We have two nurses and one in training for the whole of however many people in Wiltshire have IBD. It’s just not enough.”
Black, Asian and disabled tenants are disproportionately likely to face discrimination looking for a home, and to end up inhabiting shoddy, unsafe and unsuitable accommodation, according to the housing charity Shelter.
Its survey of 13,000 people’s housing experiences suggests that overall 17.5 million people are affected by what the charity calls the “housing emergency” – meaning they live in housing that is substandard or hazardous, unaffordable, or unfit for their needs.
High housing costs – and the failure of housing allowances to keep pace with rents – meant that for a fifth of people housing was a source of stress, while 14% admitted they cut back on food or fuel to prioritise paying the rent or mortgage.
Shelter said the pandemic had shone a stark light on the state of Britain’s housing, with poverty and poor and overcrowded accommodation recognised as a key factor in many areas where Covid infections and deaths were highest.https://interactive.guim.co.uk/charts/embed/may/2021-05-25T16:54:19/embed.html
Structural racism and discrimination mean black, Asian, and disabled people, gay people, people on low incomes and single parents are overwhelmingly more likely to experience poor and inadequate housing, the charity said.
As well as being more likely to be on low incomes, racial minorities were more likely to be offered poorer homes or “steered” into certain neighbourhoods, Shelter said. So-called “No DSS” discrimination and the ineligibility of some migrant workers for housing support further diminished the housing chances of marginalised groups.
Shelter’s survey found:
- Black and Asian people were almost five times more likely to experience discrimination when looking for a safe, secure and affordable home than white people (14% versus 3%). More than one in 10 disabled people, and 7% of those earning under £20,000 a year, found it hard to find a safe and secure home.
- Twelve per cent of black people and 14% of Asian people reported safety hazards in their homes, such as faulty wiring and fire risks – compared with 6% of white people. Fourteen per cent of black people and 16% of Asian people reported living in a property with significant defects with walls or roof, compared with 8% of white people.
- Overall, 56% of black people were affected by the housing emergency, compared with 49% of Asian people and 33% of white people. More than half (54%) of disabled people were affected (compared with 30% of non-disabled people) and 58% of single parents.
Polly Neate, the chief executive of Shelter, said: “Decades of neglect have left Britain’s housing system on its knees. A safe home is everything, yet millions don’t have one. Lives are being ruined by benefit cuts, blatant discrimination and the total failure to build social homes.”Advertisementhttps://d4a80180f272b5ac94a9163294a40bf0.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html
Despite big changes in the housing market in recent decades – 11 million people now rent in the private rented sector, twice as many as 20 years ago – housing laws have changed little since the 1980s, trapping many in a series of short-term private lets and creating a “permanent state of stress and instability” for many tenants, Shelter said.
Not only were an estimated 1.5 million people bringing up children in the private rented sector – twice as many as 15 years ago – but hundreds of thousands of older people were likely to be renting privately in years to come, “facing unaffordable rent increases at a time when most owner-occupiers are starting to be mortgage-free”.
Shelter is calling for 90,000 social homes to be built every year to stem the crisis of affordability and to cut the estimated 1 million people on council waiting lists.
A Ministry of Housing, Communities and Local Government spokesperson said: “We’re providing over £750m this year alone to tackle homelessness and rough sleeping and are investing over £12bn in affordable housing.”
Families of patients held in the Winterbourne View Hospital have written to the prime minister demanding better care for adults with learning disabilities.
The abuse of patients at the assessment and treatment unit near Hambrook, Bristol, was exposed by BBC Panorama 10 years ago this month.
The families said “countless” others have suffered “trauma” in the system.
Mencap said the lack of change in the last decade was “deplorable”.
Eleven of the hospital’s staff were prosecuted, but seven relatives of people who were housed there claim abuse in similar facilities continues.
Research by Mencap and the Challenging Behaviour Foundation (CBF) shows 2,040 people with autism or learning disabilities are being held in assessment and treatment units.
The units are meant for short-term treatment but patients are held for an average of more than five-and-a-half years.
The charities said 355 people were in assessment and treatment units for more than 10 years.
In their letter to Boris Johnson, the families said: “Not even the exposure in the media of their torture has been sufficient motivation for government and the NHS to change a broken system.”
The families said they want to see the number of units cut and money ploughed into social services and residential care to allow people to live semi-independently.
“For the sake of our family members, and all others facing this system today, the change must happen,” they said.
Ann Earley, mother to Simon, now 47, who was at the hospital between 2010 and 2011, said: “The dangers have been exposed, the failures noted, the appalling damage catalogued, but still decision-makers and commissioners condemn our loved ones to a life of misery.”
Edel Harris, Mencap’s chief executive, said: “For people and their families to have been through such horrors and for so little to have changed is deplorable.
“We cannot tolerate a situation where more people are locked up simply because they cannot access appropriate support in their community.”
Vivien Cooper OBE, chief executive of the CBF, said: “Think what can be achieved in 10 years – then consider how little has changed for so many people with learning disabilities and autistic people.”
The Department for Health and Social Care has been approached for comment.
Stephen Hawking’s Papers To Be Saved For The Nation
Prof Stephen Hawking’s scientific papers and personal possessions are to be saved for the nation.
The objects include childhood letters, scripts from his TV appearances and Prof Hawking’s ground-breaking research into black holes.
The 10,000-page archive will be kept in perpetuity at Cambridge University library.
His office will be reconstructed in the Science Museum next year and selected highlights will go on display.
Prof Hawking’s son, Tim, said that the family was delighted that his body of work and memories of his life were being safeguarded for future generations.
“Our father would be really pleased,” he said. “It was really important during his lifetime that science be opened up to the widest possible number of people and be democratized and not be the preserve of the elite few.”
The early years
The collection encompasses Prof Hawking’s personal and professional life. Particularly touching is a letter by Hawking to his father on family-headed notepaper that was written when the future professor was six years old.
In child-like lettering, with several crossings out, the young Stephen tells his father a story about pirates loading treasure. He signs off with hugs and kisses.
Tim Hawking saw the note for the first time only recently.
“I would write my dad letters along those lines,” he reminisces fondly. “It was quite nice to see it being passed along the generations and appreciating that he had a loving relationship with his dad, as I did when I was (that) age. It shows a tenderness in his relationship with his father which I hadn’t fully understood until now.”
Prof Hawking was a prolific letter writer. He communicated with popes, US presidents and Nobel laureates.
The letters, however, show his handwriting deteriorating after a diagnosis of motor neurone disease in 1963. Its progression is captured by the increasingly misshapen letters and inkblots on the page.
TV scripts
Prof Hawking made an immense contribution to science. But his status as the world’s most famous scientist was partly because of his appearances on popular TV programmes such as Star Trek and Big Bang Theory. Among the archive is Hawking’s personal script from his first appearance on the Simpsons, in 1999.
In the episode, Prof Hawking and Homer Simpson go to Moe’s Tavern for a drink. Prof Hawking becomes intrigued by Homer’s theory of a “doughnut-shaped Universe” and wonders if he can steal it. Homer imitates him, in an attempt to make him pay the bar bill and gets punched by a boxing glove on a spring, concealed in Prof Hawking’s wheelchair.
Dr Jessica Gardner, who is Cambridge University’s director of library services said the scripts reflect an important aspect of Prof Hawking’s contribution to the communication of science.
“He had an enormous sense of humour. He was willing to be in the Simpsons, to let fun be taken, if what that did was to help communicate science and help people get excited about it,” she explained.
To have these scripts shows the celebrity part of his life, but also that he was determined to break down the barriers to science.”
Scientific papers
The star attraction for historians will be Prof Hawking’s research papers and correspondence with his collaborators. They are a record of how his unique mind worked, cataloguing corrections and changes in his ideas over time.
Prof Paul Shellard, who worked with him at Cambridge University, said that the collection of papers had a profound influence on our understanding of space-time and the Universe.
“It’s a wonderful thing that historians of science can get an idea of how Stephen thought about these problems,” Prof Shellard explained. “He saw further than others and I hope that (his) intuition and way of thinking will come through in the archive and be remembered in perpetuity.”
The collection contains a glowing letter, from Prof Hawking’s PhD supervisor, to the 22-year-old budding researcher’s dad, Frank.
“It is such a pleasure to supervise him,” writes Prof Denis Sciama, a noted physicist at the time who is credited as a father of modern cosmology. “Indeed, I’m at a stage… that I am learning from him”.
Accompanying a seminal 1974 scientific paper, on how black holes are not completely black, is a cover letter to the editor of one of the world’s leading scientific journals, Nature. In it we see a confident, if not downright cocky young man, in little doubt about the importance of his research paper.
Hawking’s office
The contents of Prof Hawking’s office, including his custom-built wheelchairs, communications equipment, and office furniture, will be transferred to the Science Museum. According to the museum’s director, Sir Ian Blatchford, although rooms of decorative or artistic interest are often kept for posterity, spaces relevant to scientific discovery are rarely saved.
“By preserving Hawking’s office, future generations will be able to delve deep into the world of a leading theoretical physicist who defied the laws of medicine to rewrite the laws of physics and touch the heart of millions,” Sir Ian said.
“These remarkable items might even inspire the next Hawking to wonder about the world around us.”
The frank, fizzy comedy Special, which has just landed on Netflix, is a tale of two Ryans. There is Ryan Hayes, the main character, a gay intern with cerebral palsy who lives in Los Angeles with his mollycoddling mother. Then there is Ryan O’Connell, the show’s star and creator, who is also a gay Angelino with cerebral palsy. But there the similarities end. Moments from O’Connell’s life resurface on screen, such as the time he was hit by a car then pretended to his new college friends that his limp was a result of the accident. (Season one ends with Ryan coming out as disabled.) But whereas Ryan is gauche and apologetic, his 34-year-old creator is almost intimidatingly sassy and self-possessed.
Talking over Zoom from his home, O’Connell speaks at the speed, and in the style, of Twitter. Anyone who read the tell-all blogs he wrote in his 20s, or his memoir I’m Special: And Other Lies We Tell Ourselves (from which Special is adapted), will recognise the exuberant voice. Song lyrics and invisible exclamation marks litter his conversation, while acronyms and punctuation are verbalised: “LOL”, “Dot-dot-dot.” He’s like the internet personified, but with none of the spite.Advertisementhttps://641e2f37e98ed72d1fe64587b2742656.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html
“Ryan still lives with his mum, has no friends and no boyfriend,” O’Connell explains. “He has Norman-Bates-from-Psycho vibes. And that was not my experience. I had a lot of friends. I moved out to go to college when I was 18. I had sex at 17. Not to brag!” Despite these disavowals, he concedes to some kinship. “Like Ryan, I have struggled with feeling like I’m enough … We were both born in an ableist hellhole, but he is more undercooked than I ever was. I never felt I had the luxury to be socially awk. My role was to disarm anyone I encountered because they were going to be so confused by …” He gestures to himself. “This presentation. It became my job to put them at ease. Ryan worries about whether people around him are comfortable that he never asks, ‘Am I comfortable?’ That’s an epiphany I’ve had.”
Special provides numerous insights into the daily slights doled out by the able-bodied world, such as the gym bunny who congratulates Ryan merely for exercising. “Oh my God, the gym is a nightmare,” gasps O’Connell. “I’m like a celebrity there. ‘Go you! Look at you, gettin’ it!’ I’m like, ‘Oh-kaaay.’” Elsewhere, Ryan finds himself with an able-bodied partner who has a disability fetish. “I have not personally been fetishised,” O’Connell says. Then, with a poker face: “I’m still looking for the right one.”
Upgraded to half-hour episodes from the first season’s 15-minute nibbles, the new series is far richer dramatically. There is space now not only for Ryan to pursue his needs but for his friend Kim (Punam Patel), a plus-size woman of colour, and his timid mother Karen (Jessica Hecht), to find fulfilment. “It’s the three of them saying, ‘I wanna be the girl with the most cake.’” He is also proud to have kept his promise that Special would become “gayer and gimpier”. Ryan previously rejected a deaf suitor on a blind date, but now he embraces the disabled and neuro-diverse community.
It’s refreshing to see authentic casting in Special, especially after the controversy over Sia hiring a neuro-typical actor to play a person with autism in her film Music. “Ableism is sosystemic and ingrained in our culture,” says O’Connell. “I don’t think Hollywood is like Mr Burns cackling behind a desk, going ‘Keep those disabled people out!’ It’s more that no one considers disabled people in general, which is very dark and very sad. We’re usually only there for ‘inspiration porn’ or to serve an able-bodied character’s personal growth.”
How can that change? “More disabled creators. We need to stop putting disabled characters in the hands of able-bodied people because that doesn’t give us money or opportunities, and they don’t fully get what it’s like.”
He is no less militant about LGBT casting. “People freak out when you talk about authenticity,” he says, then slips into a parody of shrill straight-splaining: “‘It’s called acting! It’s literally their job!’” This is followed by a gentle wave of the hand, as though placating a petulant child. “‘Honey, baby, sweetie, I understand what acting is. I’m Emmy-nominated!’ But the reality is that if you’re a straight actor, you already have more opportunities than an out gay actor. Why would I take another role from them and give it to someone straight?” Not only are the gay characters in Special played by gay actors, but several of the straight ones are, too. “Can you believe it? It’s possible!”
An explicit approach to gay sex was a deal-breaker from the moment O’Connell started pitching Special. Backed by its executive producer, the Big Bang Theory star Jim Parsons, the show has never shied away from what gay men do in bed, and the new series gets even more down and dirty. One sex scene in particular serves a radical function: Ryan behaves cruelly to his partner, and is cast as the shamer rather than the shamed. “I never wanted him to be this amazing virtuous figure. As marginalised people, we’re allowed to exist within very narrow slots, and I always like to challenge that. I set out to make the viewer feel annoyed at this gay guy with cerebral palsy. He doesn’t have to be perfect so that you can feel good about yourself. He doesn’t need to be your inspiration, honey. He can be a source of your ire.”Advertisement
For all his elation over Special, he admits to feeling “disappointed” when Netflix told him the second season would be its last, but he feels ready to let it go. “This show has given me so much, but it’s never been easy. It has always been limping its way along, holding on for one more day by Wilson Phillips.” O’Connell, on the other hand, is speeding ahead. HBO Max is mulling over Accessible, a pilot he has written set at a disabled boarding school, while his first novel, Just By Looking At Him, is published next year. “The lead is a gay disabled television writer,” he says with a disarming grin. “Whaaat? Who’s that?”
If able-bodied people are permitted to plough the same furrow, why can’t he? “Sofia Coppola has wealthy malaise cornered. Sally Rooney writes the same book – they’re good but I’m sorry! – and no one’s like, ‘This again?’ As soon as the characters are marginalised people, they’re only allowed to exist thiiis much.” Perhaps there will come a time when he isn’t writing about cerebral palsy. “But as a writer, I’m naturally attracted to things that aren’t discussed or understood, or which are stigmatised. Unfortunately, disability checks all three boxes. It’s a giant well of interesting stories that we’ve never seen before.” Another big grin. “Why would I throw that out of bed?”
Special season two is on Netflix now.
With many thanks to Benefits And Work.
The DWP have failed to give an answer to any Freedom of Information Act requests relating to the LEAP review made by Benefits and Work, fuelling the suspicion that they have something to hide.
LEAP is a review of 1.6 million PIP claims set up because the DWP had been interpreting the law incorrectly. So far, the review is on course to pay out to only around 7,000 claimants in relation to one case, known as MH, when the original DWP estimate was that 164,000 would benefit.
Algorithms
As reported earlier this month, Benefits and Work asked the DWP for details of any algorithms being used to carry out the LEAP review.
The DWP’s response was to simply direct us to an unconnected parliamentary answer which denied that any algorithms were ever used by the department, but they did admit to using automated ‘business rules’.
We have now made a separate request for details of the business rules used in connection with MH and LEAP, because to us they sound very similar to algorithms.
Letters
In its most recent progress report the DWP claimed that 890,000 cases had been cleared against MH. We made a request to ask how many of those claimants had received a letter from the DWP giving them the results of their review.
The DWP once again pointed us to a parliamentary answer which appeared to say that all of these claimants had received a decision letter. But the answer also included a link to a previous answer which stated that:
“Through continuous monitoring of the exercise, we have been identifying claimants most likely to benefit, so that we can focus on paying these claimants backdated payments more quickly. We are writing to other claimants, explaining how we apply the Upper Tribunal decisions and letting them know they can get in touch with us if they think they are affected, and we will review their claim.”
This has left us uncertain how many of the 890,000 claimants have been written to with the result of a review and how many have simply been written to and told they can ask for a review. This is particularly the case as fewer than 4,000 of the 890,000 have actually been given a payment.
We asked for a review of the DWP’s answer but it remained unchanged. The matter is now with the Information Commissioner’s Office.
Expert advice
We also made a Freedom of Information request for copies of the expert advice and small scale case study which had been used by the DWP to come up with the original estimate that 164,000 claimants would be eligible for a back-payment in connection with MH.
But the DWP refused our request on the grounds that it would take one person more than 3.5 days to collect this information because it is “contained across multiple systems, from a significant time
past, and would require searching through a significant number of archived documents” and that it was therefore above the cost limit.
We don’t believe this to be true. The estimate was created for a document presented to MPs and ministers to persuade them of a need to change the law.
It isn’t credible to argue that the information for the report was never collected and collated but instead is scattered far and wide across the DWP.
We have asked for the decision to be reviewed and will, once again, take the case to the ICO if necessary.
What’s the secret?
There is a massive difference between the 164,000 people the DWP estimated would receive between £3,000 and £12,000 each in back-payments and the 7,000 people the DWP are on course to actually make a payment to.
The DWP have not addressed this issue in any way in their reports on the LEAP review. They very much do not want attention drawing to it.
Which is why we will carry on asking questions until we get some answers.
Covid: Deaf Campaigner Calls For Clear Mask Research
More research needs to be done into effective clear masks to help deaf people communicate during the pandemic, according to a campaigner.
Melissa Julings, 35, from Norwich, said the wearing of masks had left deaf people feeling “isolated” and “lost” throughout the past year.
The government is due to review face coverings before 21 June, but Ms Julings said more work was needed to find better clear masks.
A spokesman for the Department of Health and Social Care said: “Transparent face coverings may be worn by those who communicate through lip-reading or facial expressions.
“However, their effectiveness is not supported by evidence so the government does not recommend their use by the wider public at this time.”
Nadia Whittome MP: I’m Taking Time Off With PTSD
A Labour MP has said she has decided to take a “step back” from her work because she is suffering from post-traumatic stress disorder (PTSD).
Nadia Whittome said she has been advised by her doctor to take several weeks off for her health to improve.
The Nottingham East MP said the decision was “incredibly difficult” and one she feels “very sad” about.
Labour leader Sir Keir Starmer wished Ms Whittome “all the best” in her recovery and praised her “bravery”.
‘Creating greater acceptance’
In a statement, Ms Whittome, 24, said she has been battling “some persistent health issues” over recent months.
“Until now, I have been attempting to manage them alongside continuing with my full-time work as an MP,” she said.
“Unfortunately, it has become clear that this is not feasible and I have been advised by my doctor that I need to take several weeks off in order for my health to improve.
“I feel it is important for me to be honest that it is mental ill-health I am suffering from – specifically post-traumatic stress disorder (PTSD).
“Through being open about my own mental health struggle, I hope that others will also feel able to talk about theirs, and that I can play a small role in creating greater acceptance and facilitating healthier discussions around this issue.”
What is PTSD?
Post-traumatic stress disorder (PTSD) is described as an anxiety disorder caused by very stressful, frightening or distressing events.
Someone with PTSD often relives the traumatic event and may have problems sleeping and find concentrating difficult.
PTSD can develop straight after someone experiences a disturbing event, or it can occur weeks, months or years later.
It is thought to affect about one in every three people who have a traumatic experience.
Source: NHS
Ms Whittome said her constituents should continue to contact her office as normal.
“My decision to take time off has been an incredibly difficult one to make. Representing Nottingham East is the greatest honour of my life and I am very sad to have to step back for a little while,” she said.
Ms Whittome became the House of Commons’ youngest MP when she topped the poll at the snap general election in 2019.
During the coronavirus pandemic, she took on a part-time job at a care home but said she was “effectively sacked” after speaking out about personal protective equipment (PPE).
Earlier this month Ms Whittome spoke about a “mental health crisis” in a column published by Nottingham magazine LeftLion.
She said the pandemic has made it worse and that young people have been most affected.
Algae Proteins Partially Restore Man’s Sight
The vision of a completely blind man has been partially restored using light-sensing proteins first found in algae.
The man was treated with a type of therapy called optogenetics, which uses the proteins to control cells at the back of his eye.
He first knew it was working when he realised he could see the painted stripes of a pedestrian crossing.
He can now grab and count objects on a table, Nature Medicine reports.
The man, whose identity has not been revealed, lives in Brittany, France, and was treated in Paris.
He was diagnosed with retinitis pigmentosa – which leads to the death of light-sensing cells on the surface of the retina – 40 years ago.
It affects more than two million people worldwide, and although complete blindness is rare, the man has had no vision for the past two decades.
He was treated with optogenetics – a field new to medicine, but one that has long been a staple of fundamental neuroscience.
It uses light to control precisely the activity of brain cells and was used by the scientists to restore the ability of one of his eyes to detect light.
The technique is based on proteins, produced in algae, called channelrhodopsins, which change their behaviour in response to light. The microbes use them to move towards the light.
The first step in the treatment was gene therapy. The genetic instructions for making the rhodopsins were taken from algae and given to cells in the deep surviving layers of the retina at the back of his eye.
Now when they were hit with light they would send an electrical signal to the brain.
However, they would respond only to amber light, so the patient wore a pair of goggles with a video camera on the front and a projector on the back, to capture what was happening in the real world and project a version in the right wavelength onto the back of the eye.
It took months for high enough levels of the rhodopsins to build up in the eye and for the brain essentially to learn a new language to be able to see again.
‘We were all excited’
The first sign it was working was when the patient was out on a walk and suddenly, the stripes of a pedestrian crossing appeared.
Dr José-Alain Sahel, from the Institute of Vision, in Paris, said: “This patient initially was a bit frustrated because it took a long time between the injection and the time he started to see something.
“But when he started to report spontaneously he was able to see the white stripes to come across the street you can imagine he was very excited. We were all excited.”
The man does not have perfect sight, but the difference between no vision and even limited vision can be life-changing.
Prof Botond Roska, from the University of Basel, said: “The findings provide proof-of-concept that using optogenetic therapy to partially restore vision is possible.”
There are several other approaches being used to try to restore sight.
One includes repairing the genetic defects that cause disease, but retinitis pigmentosa can be down to mutations in more than 71 different genes, making that more of a challenge.
Another involves connecting a camera to electrodes implanted in the back of the eye.
Optogenetics itself is also being researched in conditions such as Parkinson’s disease, and to see whether it can enhance recovery from a stroke.
James Bainbridge, a professor of retinal studies at the UK’s UCL, said the study was high-quality, but on just one patient.
“This exciting new technology might help people whose eyesight is very severely impaired,” he said.
Follow James on Twitter
A private special needs school, whose directors include businessmen associated with the Winterbourne View care home scandal, has been accused of putting profit ahead of pupils’ needs.
Annual fees paid by councils to send pupils to Leaways School in east London are £53,000 – higher than Eton.
One parent told a BBC investigation she is pulling out her son as she fears for his mental state if he stays there.
However, Leaways denied the claims that it put money ahead of welfare.
In a statement, the school said: “We strongly refute the suggestion profit is ever put ahead of the needs of children.
“The vast majority of families are happy with our school and they see their children doing very well here.”
The school says it was “deeply saddened to hear the opinions of a small minority… of our parent and staff community”.
‘Sold a dream’
One is Donna, who fought to get her 10-year-old son Javon into Leaways almost two years ago, believing the school would provide state-of-the-art support for an autistic child.
Now she says: “I was sold a dream. They actually have no idea… I feel like if my son stays there any longer, it will be detrimental to his mental state.”
Being there makes him anxious, she says, often he becomes mute, not speaking all day, or isolating himself for hours in the school’s sensory room.
‘Chaotic environment’
Lee Boyce, a former assistant head at Leaways, describes “a kind of systemic failure at a leadership level to… understand the complexity of those children’s needs and to put in place provision that met them”.
When she left in 2019, she says working conditions were stressful and a high staff turnover and absence rates contributed to a “chaotic environment” for pupils who were often already volatile.
Lee, now a principal inclusion advisor for a London borough, specialises in keeping such pupils in mainstream schools and says the £53,000 could be better spent.
“If you had even half of what you get for a child at Leaways… you could do amazing things,” she says.
Reward and responsibility
Leaways is part of Kedleston Group, which runs 13 schools and homes in England.
Kedleston’s directors include Denis and Paul Brosnan. In 2011, they were directors of Castlebeck, which owned the Winterbourne View private hospital near Bristol, where serious abuse was uncovered by a BBC Panorama investigation.
An inquiry the following year found Castlebeck “took financial reward without the responsibility”.
Some current Leaways staff believe profit is paramount at the school.
“It’s a business that happens to be a school,” one support worker told the BBC.
In 2019, Kedleston Group, which is owned by a Jersey-based holding company, had:
- a £5.3m operating profit, up from £4m in 2018
- a turnover of £32.7m, up nearly £4m on 2018
- operating profit on its London schools of £740,000
‘Failing him’
Donna says Javon’s Education and Health Care Plan (EHCP) – a legal document which details a child’s special educational needs and the support required – was not reviewed for nearly two years.
By law, these documents must be reviewed annually and this timescale remained in place during the pandemic.
Donna claims the amount of speech and language therapy and emotional literacy coaching provided by the school fell below the levels specified in his plan.
“How do you explain to a child with autism, that in actual fact mum got it totally wrong?”https://emp.bbc.co.uk/emp/SMPj/2.43.0/iframe.htmlmedia captionDonna: “How do I explain to him I got it wrong?”
Donna is not the only parent wanting to remove her child.
Another, who asked not to be named, also told of delays to educational reviews and inadequate therapy.
At first sight Leaways “appears to be a super specialist school, glory and glitter. It ignites hopefulness and it’s just not that”, she said.
‘No teacher’
In 2016, when Brenda’s son Ethan started at Leaways, she says: “Everything was perfect.”
But in 2017 the head teacher left, followed by Ethan’s teacher, and the class was led by a teaching assistant for most of the next school year, Brenda adds.
Leaways says the use of teaching assistants to lead classes is “kept to an absolute minimum” and only when the alternative is “not to have the children in school at all”.
“Where possible we ensure that the teaching assistant is experienced, has an aptitude for leading the class and has a higher-level qualification,” it said.
“The school does not have a materially different staff turnover rate to the industry norm.”
But without a class teacher, Brenda says Ethan became anxious and aggressive and started having seizures.
When he was checked out for epilepsy at Great Ormond Street hospital, the consultant said: “It’s not epilepsy. It’s anxiety,” she remembers.
Eventually the school appointed a new teacher, “a godsend”, according to Brenda, and Ethan’s mental state improved,
But in the summer of 2019, she also left and Brenda decided it was time to remove Ethan.
The family felt there was no-one to hear why they were taking out their son: “There was nobody to tell. We just weren’t confident any more,” says Brenda.
‘Little training’
Lucy, who asked not to use her full name, was Ethan’s teacher in his last year at Leaways.
She was hoping to gain experience as a specialist autism teacher, an area where she had no formal training, but within weeks of starting in the school’s specialist unit, says she was asked to lead it.
She declined, saying: “It wasn’t what I was expecting… It became clear quite quickly that the school were making a profit from not meeting the needs of children.”
Some of the teachers were unqualified, she says, and support staff often had very limited experience and training.
“When you start working there, you’re just kind of thrown in,” she says, adding: “It’s harder to teach children with complex needs than it is to teach typically developing children.”
She says during her time at Leaways, access to therapies was limited. For example, there was one part-time counsellor to support some 50 children with social, emotional and mental health needs.
She says children in the mainstream school where she now works “have better access to therapy”.
“This very high fee-paying school is just not meeting the need.”
‘Consistent standards’
Leaways emphasises that Ofsted’s latest report, published in March, says the school’s leaders “ensure standards are met consistently”, that children are “well supervised” and staff supervision is “proportionate and appropriate”.
“We are also regularly visited for quality assurance by the local authorities who place children with us, who have also raised no concerns of any kind.
“No school is perfect and all have faced challenges as a result of Covid-19.
“Leaways has faced the dual challenges of both the pandemic and an industrial dispute.
“Where improvements are required, we are actively working with parents, our colleagues and all parties to make positive changes and progress wherever they are needed.”
A long-running dispute over pay and conditions ended recently with a deal between Leaways and the National Education Union.
Hollyoaks‘ Courtney Campbell and Sid Sumner’s relationship has taken a rather different turn over the past few weeks, with Sid coming to harbour feelings for his teacher as she has supported him through his partial leg amputation.
Caring Courtney (Amy Conachan) has been encouraging Sid (Billy Price) to pursue his career goal of joining the police and Sid recently misread the signals and kissed his teacher. Despite Courtney telling Sid that his behaviour had been inappropriate, Sid continues to harbour feelings for Courtney and the situation takes another turn next week when Sid lies about the nature of their relationship.
Actress Amy Conachan, who plays Hollyoaks High teacher Courtney, has revealed to Inside Soap that Courtney definitely has no romantic feelings toward her student.
“She had no idea Sid had feelings for her,” she said. “So she was shocked and embarrassed, and aware Sid probably felt the same. Courtney works in a school, so she knows teens do silly things, and just shrugs it off.”
In upcoming scenes, Sid will snap a photo of himself and Courtney while they chat and share it online. This leads to Courtney facing trouble at work as she is questioned over her relationship with Sid during her interview for the deputy headteacher job.
But Amy revealed that Courtney won’t be condemning Sid for his behaviour, explaining that her character is understanding of the teen’s confused feelings.
“I feel bad for Sid! And I think Courtney does too, she’s emotionally aware and mature,” the actress explained. “Her job is to work with kids, so she realises why Sid spreads the rumours and takes the photo. So while she’s angry, she understands and loves him anyway.”
She continued: “I think Sid’s problem at the moment is that he can’t distinguish between caring for someone and having a crush on them. But Sid’s been through a lot in a short amount of time, and all while being a teenager – it’s a lot to deal with.”
Hollyoaks has portrayed student-teacher relationships before, most notably in the case of Becca Dean and Justin Burton’s troubled romance in 2006. But could Courtney and Sid be heading toward a two-way romantic relationship?
“It would be a real shame if it got to that stage,” Amy said. “And it would be strange if anything else developed, as Courtney has been a maternal figure towards Sid. But you never know what’s around the corner…”
Will Sid’s infatuation get Courtney into serious trouble?
Hollyoaks airs weeknights at 6.30pm on Channel 4, with first look screenings at 7pm on E4.
A press release:
An innovative wheelchair wheel design has won Bolt Burdon Kemp’s Design the Change Competition. The competition, in its second year, is intended to raise awareness of the day-to-day challenges facing people with spinal cord injuries and how innovative designs can make a real difference.
The competition invites UK-based university students to design a product aimed at improving the lives of people with a spinal cord injury. Law firm Bolt Burdon Kemp, which supports people with spinal cord injuries, was looking for a design which was both unique and practical.
Winner Thomas Salkeld, 23, a third year Product Design BSc student from Cardiff Metropolitan University, designed the ‘Smart Wheel’, a motorised wheel which can be added to most wheelchairs and provides users with assistance on uneven ground, elevation and on long journeys. The wheel can be controlled from the user’s phone.
Thomas wins £3,000, with an additional £2,000 being awarded to Cardiff Metropolitan University.
Design the Change is supported by Bolt Burdon Kemp’s charity partner Cerebra which works to improve the lives of children with neurological conditions. Part of the charity’s work is to design bespoke equipment to meet families’ needs at their innovation centre and as part of his prize, Thomas will have a week’s placement at the centre in Wales next year.
Thomas really impressed the judges by researching his design thoroughly and taking into account the challenges facing those with a spinal cord injury who use a wheelchair. He bought a wheelchair himself and found travelling in it exhausting, especially uphill. He spoke to several people who had sustained a spinal cord injury and who were also wheelchairs users and ran his prototypes by them for feedback.
Highly commended in the competition and also offered a week’s placement at Cerebra is Anna Lis, 21, a third year Product Design student at the University for the Creative Arts. Anna’s Superhuman Shoe and Ankle Foot Orthosis design provides support for people with drop foot, a common side-effect of a spinal cord injury. The judging panel were impressed with Anna’s detailed research and the fact her shoe celebrates the support it offers, rather than disguising its specialist features.
Victoria Oliver, head of the spinal injury team at Bolt Burdon Kemp, said: “We were blown away by the quality of the entries this year and it’s fantastic to see how much research went into everyone’s designs. A spinal cord injury is a life changing event that makes even the most mundane of tasks time-consuming, and innovative designs and products can really help make the world more accessible to the 50,000 people living with a spinal cord injury in the UK.
“Thomas’s design showed real awareness of the challenges facing those with a spinal cord injury who use a wheelchair and he went to great lengths to make sure his Smart Wheel design was practical, comfortable, and aesthetically pleasing.”
Winner Thomas Salkeld said: “I am ecstatic about winning the competition as designing to help people is my passion and what I wish to pursue in the future. The aim of my design was to really take into consideration what the users want and the problems they face every day in regards to their mobility in a wheelchair, then applying my engineering, design, prototyping and technology skills that were necessary. The aesthetics were designed to be functional but also pleasing to the eye, allowing the users to be proud of the product on their wheelchairs. I want to say a huge thank you to a number of people but first to Bolt Burdon Kemp and the judges for giving me the opportunity to participate in such an interesting brief and subject. I would like to thank James Dwyer, Louise Evans and Darren Povey for giving me feedback and a glimpse into some of the struggles they have in wheelchairs which really drove my project forward. Lastly I would like to thank my tutors Joe Venables and Clara Watkins for supporting me throughout the project.”
Thomas’s design was judged by a panel of experts including Christa Dyson, trustee for the Spinal Injuries Association, Dr Ross Head, Product Design Manager for the Cerebra Innovation Centre, Ian Hoskings, club chairman, vice coach and player for Stoke Mandeville Wheelchair rugby club, Lady-Marie Dawson-Malcolm, Support Network Officer for the Spinal Injuries Association and Doug Nevill, the Head of Mechanical Design at Williams F1.
Broadcaster Jeremy Paxman has revealed he has been diagnosed with Parkinson’s disease.
The former Newsnight presenter said he was receiving “excellent” treatment and that his symptoms are “currently mild”.
“I plan to continue broadcasting and writing for as long as they’ll have me,” he said.
The 71-year-old has hosted University Challenge since 1994 and is renowned for his fiercely inquisitorial interviewing style.
Born in Leeds in 1950, the presenter joined Newsnight in 1989 and remained with BBC Two’s nightly bulletin until June 2014.
In recent years he has presented documentaries about the British Empire and Winston Churchill.
Paxman said he would be making no further comment and had written about his diagnosis for the June edition of Saga magazine.
This year’s Eurovision entry from Norway, TIX, has arrived with more than just music on his agenda.
“To me Eurovision is not much about the contest, especially this year. It’s the biggest arena to talk about diversity, acceptance and inclusion.”
TIX – real name Andreas Haukeland – takes his name from the tics he has due to his Tourette’s Syndrome.
During the semi-final on Tuesday, TIX showed his tics live on stage by removing his sunglasses.
He describes that moment as “one of the most difficult things I could ever do” as his tics “just go bananas”.
These tics usually present as twitching in his facial muscles, and blinking.
He adds: “The song is about feeling inadequate. It’s about feeling out of place in this world.
“But the point of that moment is to show people this angel. What is he hiding? What’s his weakness? Why is he being held back by these demons? What is he afraid of?”
Fallen angel
TIX got to the final by winning a public vote in Norway, and then qualifying in the top ten of the semi-final in Rotterdam on Tuesday.
The themes behind the song, Fallen Angel, come from TIX’s personal experience with bullying and mental health, themes which he shared in an interview with NRK ahead of his selection for Norway.
“I think this year more than ever, it’s important to talk about it because of the current situation in the world.
“People have been having a miserable year, and a lot of people are suffering right now from mental illness and loneliness.”
Ewan Spence, Editor of Eurovision website ESC Insight, says TIX isn’t the first disabled artist to feature prominently at Eurovision.
“In 2015 you have the Finnish punk band PKN, who won through their national final and went on stage in Austria.
“There have been a number of blind performers and a couple of wheelchair users, such as Monika Kuszyńska for Poland in 2015.
“There’s also Bianca Nicholas, who sang for the UK with Electro Velvet in 2015. She is not visibly disabled, but has cystic fibrosis.”
TIX is hoping his music will have an impact across Europe, and for one fan in the UK, his position in the contest means a lot.
Jess Short, 24, from Cornwall, has Tourette’s and volunteers with the charity Tourette’s Action. She has been a Eurovision fan for more than a decade.
She says it’s “brilliant” to have someone like TIX on stage at Eurovision.
‘Embrace yourself’
“It shows that despite having something like Tourette’s, which can be so debilitating, you can live your dream and you could do anything that you put your mind to.”
TIX’s message to people like Jess across Europe is: “Don’t just be yourself, embrace yourself.”
He adds: “Once you embrace yourself, that’s when the happiness starts. Tourette’s is both a blessing and a curse, but try to focus on the blessing”.
The Eurovision Song Contest is being broadcast on Saturday 22 May on BBC One at 20:00 BST.
The Guardian have come up with a really great new project, Auditorial.
Audio storytelling is an avenue into other worlds. So when the Guardian was approached to take part in an experimental project to make journalism more accessible to low-vision and blind users, it felt like an opportunity we couldn’t turn down. Audio has always been about making stories more accessible, and this was an opportunity to push that even further.
The result is a storytelling website called Auditorial, created to showcase the possibilities of accessible stories for blind and low-vision audiences. The story is our own, paired with Google technology and the invaluable accessibility user-testing and expert advice provided by the Royal National Institute of Blind People (RNIB) – an example of what can be done when inclusive design and thinking are at the forefront from the start.
The website, which was created over a seven-month period, was born out of an episode of our Science Weekly podcast from 2018. And the story, similar to the original podcast, is based on Bernie Krause, one of the founders of a field known as soundscape ecology. Over 15 or so minutes, we use his story to explore the devastating effects of the climate crisis and other human-induced environmental destruction on the sounds of the natural world, from coral reefs to Costa Rican rainforests.
The Auditorial platform uses an assortment of accessibility features and tools to tell the story, including multimodal films with video and audio speed control, high contrast, text-only mode, and scale and focus controls. Users can press play to start the story and adjust the audio, visual and written settings as they are taken through the story.
The final product is something we are really proud of. There have been many lessons learned along the way, and our ideas of what we would end up with have changed as the project progressed; we were trying to do something that had never been done before. The hope is that we can go on to apply some of its key tenets to more of our journalism – and encourage others to do the same.
Enrich your storytelling with sound
Many low-vision and blind users currently access journalism online through screenreading software, which converts text into audio. This is often done in a synthetic voice and doesn’t always discriminate between essential text and other aspects, meaning the experience can be jarring.
But, as with podcasts, when a story is presented in audio, the result is a more immersive experience, where sound design and intonation can add emphasis and emotion, and characters are able to tell their story in their own words. While this won’t be possible for all of our online journalism, it’s something we should consider when thinking about things such as how we label images using something called “alt tags”.
The team worked to create more narrative alt tags to improve the story experience, such as this one describing the scene of Bernie Krause recording.
Write narrative visual descriptions
For those using screenreading software, alt tags are essential for letting users know what an image shows. And while most websites – including the Guardian’s – do provide these, they are often written as succinct labels. This can lead to quite a disjointed narrative experience.
So a big lesson for our team was how to make alt tags more descriptive and more in line with the narrative. They should feel part of the reader experience and, if done correctly, should play a role in telling the story to a person using assistive technologies.https://interactive.guim.co.uk/embed/from-tool/looping-video/index.html?poster-image=https%3A%2F%2Fuploads.guim.co.uk%2F2021%2F05%2F19%2FKeyViusal_500.mp4&mp4-video=https%3A%2F%2Fuploads.guim.co.uk%2F2021%2F05%2F19%2FKeyViusal_500.mp4An abstract red and blue illustration shows a howler monkey playfully hanging from a tree with a yellow leaf in its mouth. Behind the monkey, the forest trees part to show a sunset over the ocean. The image switches between a light and dark colour mode.
Offer alternative colour schemes
An important part of the project was providing visuals to enhance the story for users with low vision, such as light or colour sensitivities.
We addressed this by giving users the opportunity to choose between black and white, yellow and black, and blue and white, which are popular combinations. But Google was also able to introduce light and dark modes – a real game-changer for people who struggle with bright screens.
Accessible journalism
The Guardian has always been dedicated to digital innovation. When new storytelling formats and platforms emerge, we try to consider how these technologies will work for our audiences, and experiment with them to bring Guardian journalism to life. Auditorial is just the latest iteration of that.
While we continue to try to make our journalism as accessible as possible, there are always going to be things we can improve on. Throughout this project, we have learned so much from our partners at Google and the RNIB about accessibility and inclusive product design – findings we are really excited to be able to share with our readers everywhere.
In 1960s and 70s Britain, hundreds of black children were labelled as “educationally subnormal”, and wrongly sent to schools for pupils who were deemed to have low intelligence. For the first time, some former pupils have spoken about their experiences for a new BBC documentary.
In the 1970s, at the age of six, Noel Gordon was sent to what was known at the time as an “educationally subnormal” (ESN) boarding school, 15 miles (24km) from his home.
“That school was hell,” says Noel. “I spent 10 years there, and when I left at 16, I couldn’t even get a job because I couldn’t spell or fill out a job application.”
About a year before joining the ESN school, Noel went into hospital to have a tooth removed. He was given an anaesthetic, but it transpired that Noel had undiagnosed sickle cell anaemia, and the anaesthetic triggered a serious reaction.
Noel says the resulting health issues led to him being perceived as having learning disabilities and being recommended for a “special school”. Yet no evidence or explanation of his disability was ever given to him or his parents.
“Someone came and said they’d found “a special boarding school with a matron where they’d take care of my medical needs”, says Noel.
During that conversation they also said Noel was “a dunce. Stupid.”
But Noel’s parents were not made aware that his new school was for the so-called educationally subnormal. They had moved to England from Jamaica in the early ’60s and had high expectations for their son’s education.
During his first night at the boarding school, six-year-old Noel lay alone in bed, crying for his mum. The school felt cold and institutional.
“I can still smell the old wooden flip desks. Oh, and being racially abused on my first day,” he says.
A student hurled racial slurs at him in the classroom but wasn’t reprimanded – the teacher simply told him to sit down.
The school didn’t teach a curriculum. Although Noel was given a book to write in by a teacher, he was never taught basic grammar or how to spell. He did some basic addition and subtraction but during classes, he mainly did crafts and played games.
His parents only realised what kind of school it was when Noel, then seven, was punched by a 15-year-old boy, and his father visited for the first time.
Noel recalls his father saying to the headmaster, “This is a school for handicapped children” – using an outdated term. He says the headmaster replied, “Yeah, but we don’t like to use that word, we call them slow learners.”
The realisation was devastating, but Noel’s father felt powerless to change things.
Noel wasn’t given the chance to take exams and get qualifications. On reflection, he says being labelled educationally subnormal made him feel inferior for the rest of his life, and gave him a lot of psychological problems.
“Leaving school without any qualifications is one thing, but leaving school thinking you’re stupid is a different ball game altogether. It knocks your confidence,” he says.
A new BBC documentary tells the story of how black parents, teachers and activists banded together to force the education system to change.
The term “educationally subnormal” derived from the 1944 Education Act and was used to define those thought to have limited intellectual ability.
“That label made children feel inferior,” says education campaigner Prof Gus John, who came to the UK from Grenada in 1964 as a student, and soon became aware of the issue.
“Students from ESN schools wouldn’t go on to college or university. If they were lucky, they’d become a labourer. The term was paralysing and killed any sense of self-confidence and ambition.”
Primary and secondary ESN schools categorised children as having moderate learning disabilities, severe learning disabilities or being “un-teachable”.
These categories were broad and when students were recommended for ESN schools, robust reasons weren’t always given by teachers and psychologists.
While some ESN schools did have good examples of teaching, for many pupils, their needs were overlooked.
Black students were sent to these schools in significantly higher proportions. The documentary makers have seen a 1967 report from the now-defunct Inner London Education Authority (ILEA), which showed that the proportion of black immigrant children in ESN schools (28%) was double that of those in mainstream schools (15%).
“The percentage of black children in ESN schools relative to black students in normal schools was scandalous,” says Gus John.
But why were so many black children defined as subnormal?
Figures from the 1960s and 70s show that on average, the academic performance of black children was lower than their white counterparts. This fuelled a widespread belief that black children were intellectually inferior to white people.
A leaked local authority report in 1969, written by a head teacher called Alfred Doulton, argued that West Indian children in general had lower IQs. This claim was based on the results of IQ tests that were commonly taken by primary school children at the time.
One of the key proponents of such theories was Hans Eysenck, a former professor at the Institute of Psychiatry at Kings College London. He believed intelligence was genetically determined and cited a US study that seemed to show that the IQ of black children fell, on average, 12 points below white children.
As Gus John says in the documentary: “When people like Eysenck wrote about race and intelligence, what they were actually doing was justifying all those tropes that had been floating around throughout the period of enslavement, where people believed that not only were black people sub-human… but they can’t be expected to perform or to be as intelligent as white people.”
Many teachers saw black children as intellectually inferior, and feared that too many black pupils in a class would depress the attainment of white pupils.
Following a protest by white parents in Southall, in June 1965 the government issued guidance which underlined the social, language and possible medical needs of immigrant children, and suggested maintaining a limit of about 30% of immigrants in any one school.
As a consequence, many local authorities adopted the policy of bussing – sending immigrant children to schools outside their local area in an attempt to limit the number of ethnic minorities in schools. The practice finally ended in 1980.
“The education system fuelled and legitimised the idea that black Caribbean children were less intelligent than other children. This was why so many of them ended up at ESN schools. It was rampant racism,” says Gus John.
Many wrongly equated race with intellectual ability. But as the late educational psychologist Mollie Hunte argued, the generally poor attainment of black students wasn’t because of their intellectual ability. Instead, the tests used to assess pupils at the time were culturally biased. https://emp.bbc.co.uk/emp/SMPj/2.42.4/iframe.htmlmedia captionA new documentary examines one of the biggest scandals in the history of British education
As Gus John explains, the tests used references and vocabulary that newly-arrived Caribbean children were unfamiliar with.
“A key element was language,” says Gus John. “If you grew up in a Jamaican household, you’d use Jamaican English – patois or creole. The problem most Caribbean students had was that because it was a derivative of standard English, nobody believed that black students needed language support.”
As a result, they were not given the extra help other immigrant children, who spoke no English before they arrived, received.
According to Gus John, teachers didn’t try to understand the cultural barriers black children faced, and the assessments didn’t consider their domestic and socioeconomic circumstances – or the impact of migration. Many children would travel to the UK only once their parents had settled in. They arrived in an unfamiliar country to live with virtual strangers, who they had not seen for years.
“This displacement and movement caused a lot of trauma,” says Gus John. “There was grief and bereavement. Those children would often not see their grandparents again.”
According to the education campaigner, there was a culture of low expectations among teachers. Learning difficulties were mistaken as learning disabilities and black children were simply “written off” and sent to ESN schools.
That is what happened to Maisie Barrett from Leeds, who was sent to an ESN school at the age of seven in the 1960s.
“I initially went to a mainstream school. There, a teacher told my mother that I was ‘backwards’ and couldn’t learn. We were told that I’d be better off at a special school.”
Maisie says that the decision to send her to an ESN school was a mistake that ruined her life chances. Like Noel, she wasn’t taught a curriculum.
“We played games, had discos… I call it a ‘free school’ because the education was so basic and we played a lot more than we worked,” she says.
It was only in her 30s, decades after being sent to the ESN school, that Maisie was diagnosed with dyslexia.
“Rather than help me with my learning difficulties, I was simply dismissed as stupid. Teachers never took the time to find out why I struggled with learning. That messed up my confidence,” she says.
“I was slow, but a teacher should have taken the time to help me learn.”
According to Maisie, the lack of learning and support was only part of the problem.
“I went to a school that was a racist institution,” she says.
Both Noel and Maisie were eventually offered the chance to attend mainstream schools. By then however, it was too little too late.
In Noel’s case, he went to a local secondary school on a part-time basis from the age of 12 and spent the rest of the week at the ESN school.
“At the part-time secondary school, I would truant because of the intimidation of not having friends and not being able to read,” says Noel.
Maisie left her ESN school at the age of 13 and started at mainstream secondary school.
“My mum put me in touch with a black social worker who, after assessing me, said that I was intelligent and suggested that I was placed in the ESN school because of racism,” says Maisie.
By then, however, unable to read or write, Maisie found secondary school extremely challenging and she left with no qualifications.
Initially, many Caribbeans who migrated to the UK during the 1960s and 70s, had a favourable view of ESN schools. Often referred to as “special schools” by teachers, Caribbean parents, with little understanding of the British education system, thought these schools would provide better support and learning for their children.
“When my mother was told that I’d been recommended for a special school, I remember her smiling. She thought that a special school meant a better school,” says Maisie.
This presumption about “special” schools was also informed by Caribbeans’ experiences of schools back home.
“British education was seen as a route to social mobility and the aspirations of parents were very high,” says Gus John. “Teachers had a high profile in Caribbean communities, and parents initially trusted British teachers. It was a shock to find out that their children were being defined as subnormal.”
However, concerns soon developed among Caribbean parents. As they witnessed their children struggle with the basics of reading and writing, parent and action groups emerged.
For example in 1970, after discovering that there was a disproportionately high number of black children in ESN schools in north London, a group called the North London West Indian Association formally complained to the Race Relations Board – alleging discrimination under the 1968 Race Relations Act.
In 1971, a book called “How the West Indian Child is Made Educationally Subnormal in the British School System”, proved instrumental in shifting the opinion of black parents. The author, Grenadan writer and teacher Bernard Coard, taught in an ESN school and had noticed the high number of Caribbean children there. When a group of concerned parents asked him to look into the issue, he wrote the book in record time.
He argued that ESN schools were being used by the education authorities as a “dumping ground” for black children, and that teachers were mistaking the trauma caused by immigration for a lack of intelligence.
Bernard Coard’s seminal work led to positive action, and a sharp rise in black supplementary schools. These were Saturday schools set up by black parents with the aim of raising the educational attainment of black children. They would teach curriculum subjects alongside black history, to raise the self-esteem of children, to help them gain qualifications and prepare them for employment.
Following years of pressure and campaigning, the 1981 Education Act enshrined inclusivity in law and the term “educationally subnormal” was abolished as a defining category.
A government enquiry into the education of children from ethnic minority groups published in 1985 found that the low average IQ scores of West Indian children were not a significant factor in their low academic performance. Instead, racial prejudice in society at large was found to play a crucial role in their academic underachievement.
But for both Noel and Maisie, the impact from their time at ESN schools remains.
“The ESN label crippled my confidence. I could have been anybody – but I was never given the tools to be the person I was born to be,” says Maisie.
Despite writing two books and gaining four degrees after leaving school – including in Caribbean studies and creative writing – Maisie has struggled to find work over the years. Currently unemployed with two adult children, she did work as a dyslexic support worker but was made redundant a few years ago.
Maisie feels as if she has spent her life “catching up”, ever since leaving the ESN school.
Noel discovered he actually likes learning and has accumulated a number of impressive qualifications as an adult, including a degree in computing. His wall at home in Tottenham is covered in certificates. Nevertheless, he still struggles with his reading and writing.
“That ESN school has messed me up,” says Noel.
And despite significant progress since then, disparities in the education of black children remain. “The concerns we used to have about ESN are still very much with us now in terms of the number of black children being put into pupil referral units,” says Gus John.
Pupil referral units were set up in 1993 to teach children excluded from mainstream school. But black pupils are disproportionately hit with fixed-term exclusions in England – by three times as many in some places.
As Gus John considers the long-term impact of ESN schools, his biggest regret is that “a whole generation were dissuaded from dreaming big”.
- You can watch Subnormal: A British Scandal on BBC1 on Thursday 20 May at 21:00 or watch on iPlayer
- The documentary follows on from Steve McQueen’s film Education, part of his critically acclaimed mini-series Small Axe
Dean Du Plessis: The First Visually Impaired Commentator To Cover International Cricket
The grunt of a bowler’s delivery, the shuffle of the batsman’s feet and the crunch of willow striking leather.
These sounds – which often go unnoticed by cricket fans – are all that are needed for commentator Dean du Plessis to relay what is happening to his audience.
The 44-year-old Zimbabwean, who was born with tumours behind both retinas, is the first visually impaired commentator to cover international cricket.
“Commentating by sound is nothing spectacular,” he modestly says.
“I have a feed from the stump microphone, no other technology, and just listen very, very carefully; as much as sighted people pay close attention to what they’re seeing, that’s what I do.”
Speaking to BBC Sport, Du Plessis explains the origins of his love for cricket, his journey into the commentary box and the techniques he uses when calling the action.
Falling in love through the sound of cricket
Du Plessis is true cricket aficionado, whose commentary is often complemented with the most obscure statistics from years gone by.
But he was not always a fan of the sport.
“My brother Gary was a very, very good cricketer but I didn’t understand the game when I was young,” he says.
“Nobody really took time out to explain cricket to me and I actually hated and loathed that with a passion.”
Born in Harare, Du Plessis later went to study at boarding school in South Africa which is where his attachment to cricket first surfaced.
In 1991, South Africa travelled to India in what was their readmission to international cricket with the country’s apartheid regime coming to an end.
“I was listening to the third match of the series on Radio 2000, South Africa’s equivalent to Test Match Special,” Du Plessis says.
“All I heard was noise, that’s all I can describe, it was just a sound of about 60 or 70,000 Indian fanatics cheering and also continuously letting off fireworks.
“And vaguely through the noise of cheering and fireworks far away, you could hear a commentator trying to tell you what was going on and I didn’t understand what he was saying.
“It was something like ‘in comes Donald to Tendulkar, through square leg, past the umpire, down to backward square leg, the fielder picks up and they run through for a single’.
“I knew little bits about cricket but I didn’t know about backward square leg and things like that.
“But I started to listen and really enjoy it. I don’t know why because I didn’t understand what they were saying, but every time it went for four or a six, I could feel the excitement building.”
Phoning cricket stars and ‘being a pest’
As Du Plessis’ affection for the game grew, he set off on a mission to reach out to his new-found heroes.
While the modern sports fan may direct message Ben Stokes or tag Jofra Archer, Du Plessis would quite simply search for Zimbabwe cricketers in the local telephone directory.
“I would then have their number and phone using a call box from school, hoping my money wouldn’t run out and just wanting to talk cricket with these players,” he says.
“I was a real pest and the main poor victim was bowler Eddo Brandes, he was a chicken farmer and sometimes I would call him after I had finished school at 8pm and he had to literally be up with the chickens at three or four o’clock in the morning.
“He’d be a bit grumpy at first but once he was up and awake he was very, very willing to chat. I also used to phone Alastair Campbell who was very kind to me as were both the Flower brothers, Grant and Andy.”
But it was former Zimbabwe batsman David Houghton – now head coach at Derbyshire – who Du Plessis really struck up a friendship with.
“Dave was just a fountain of information, but what I really appreciate was he didn’t just answer my questions but he would ask all about me too,” adds Du Plessis.
“Once my money was about to run out and he asked for my number to call me back, and we spoke for a good 20 minutes.”
From fan to commentator
Having finished his studies, Du Plessis returned to Zimbabwe with a network of superstar cricket friends.
“It was the cricketers – the Flower brothers, Houghton, Campbell, Brandes – that made me feel very, very welcome and would invite me to come watch them play,” he says.
Du Plessis soon became a regular at national grounds and, having been given the freedom to walk around the media centres, was rubbing shoulders with broadcasters and cricket press.
During an international triangular series between Zimbabwe, India and West Indies in 2001, he was invited to join journalist Neil Manthorp, who was on old school friend, and former India batsman Ravi Shastri for a 15 minute chat on the Cricinfo website’s online radio broadcast.
Du Plessis’ knowledge and enthusiasm impressed both the broadcast team and those back at headquarters.
“It was meant to just be a short conversation on my enjoyment of cricket but Neil received an email from the office halfway through,” he says.
“The producers wanted to keep me on for the full 30 minutes and make sure I was a part of the rest of the series.
“And that’s pretty much how my commentary started. I then got my first television gig two years.”
How does he do it?
Du Plessis is often asked how he manages to identify what is happening on the field.
“Well, I don’t have any extra technology or extra stump mic or anybody telling me what’s going on,” he answers.
“I can tell you who the different bowlers are by the way they approach the crease.
“With Stuart Broad, for example, there’s a bit of a dragging sound as the ball is delivered he gives an explosive grunt as he gets to the wicket.
“Some approach the crease very quietly, like Freddie Flintoff who hardly made a sound, whereas Shane Warne, as a leg-spinner, had a huge grunt.”
Du Plessis can also determine which batter is on strike through the sound of their voice, and the direction in which the ball is hit by the noise it makes off the bat.
“In terms of batting you just listen very carefully to how the batters communicate with each other,” he says.
“When Andrew Strauss and Marcus Trescothick used to bat together, Trescothick would always just say “run” when he hit the ball whereas Strauss would say “Yeah come on, come on, come on”.
“And when the ball is hit through the off side, it has a very sharp, crack sound, as opposed to the ball being played through the leg side.
“I can also tell when sweep shots are being played because you can hear the bat hitting the ground with a scraping sound.”
‘I think I have found my niche’
A lifetime of listening to cricket coupled with the ability to recognise people by sound, touch and smell has enabled to Du Plessis to forge a successful career as a broadcaster.
A presenter of his own cricket podcast, he says his commentary work may need to take a back seat due to health reasons.
“I think I will have to do less of the commentary and that’s mainly due to the fact that I’ve lost quite a bit of my hearing, especially in my left ear,” he explains.
“Apparently that’s a common thing with blind people because we use our ears so enthusiastically.
“But I think I have found my niche in hosting, presenting and doing podcasts. I would love to progress my broadcasting career and perhaps emigrate from Zimbabwe, ideally to a cricket-playing nation.”
As our town and city centres reopen following Covid restrictions, changes are being made to accommodate new rules.
But are they making these places less accessible?
Disability rights campaigner Emily Nicole Roberts gives her experiences around Swansea.
Rugby bosses need to follow the NHL’s example in reducing risk of brain injury, according to former players.
In December, former Welsh international Alix Popham and a small group of former players announced they were suing World Rugby, the RFU and the Welsh Rugby Union over brain damage.
Popham was diagnosed with early onset dementia, which has been attributed to concussions sustained during his rugby-playing days.
He and other players are now asking rugby bosses to follow American football’s example in reducing the amount of contact in training sessions.
Popham has the framed jersey from his last Wales game – a win against England in 2008 – and has been shown pictures of him celebrating afterwards.
But says he cannot remember the game.
With many thanks to Benefits And Work.
The DWP has issued guidance to DLA decision makers on how to deal with awards for Long Covid in children, but there is no evidence that similar guidance has been issued for PIP or for the work capability assessment for ESA and UC.
The DWP has updated its 950 page Medical guidance for DLA and AA decision makers (child cases) to take account of Long Covid, or post-COVID as it is referred to in the guide.
Decision makers are told that children who remain unwell at 12 weeks after the onset of COVID-19 with a wide variety of symptoms, and whose long term prognosis is unknown, meet the diagnostic criteria for post-COVID syndrome.
Decision makers are told:
“Some may recover in a few more months and some may recover over a longer time period. Others may remain unwell or become more unwell over time. Fluctuating functional impairment and wide ranging symptoms that change over time, seem to be a feature of the condition.
“It is those children who have significant functional impairment at 12 weeks and do not seem to be recovering, who may have entitlement to DLA Child.
“Always consider the qualifying period and prospective test when assessing needs in a claim for DLA Child.
“A child does not have to have had a positive test result to be diagnosed with the syndrome. Testing has not always been easily available.”
The guidance includes symptoms of post-COVID.
Decision makers are told they must refer all cases where post-COVID is stated as a disability to the on site health professional before they make a decision on the claim, but that where an award is made, 12 months is appropriate.
What we don’t know yet is what guidance has been issued to assessors and decision makers relating to post-COVID in connection with PIP or the work capability assessment.
Benefits and Work has made a freedom of information request for any such guidance. We’ll let you know what we find out.
A man who was paralysed from the neck down in an accident more than a decade ago has written sentences using a computer system that turns imagined handwriting into words.
It is the first time scientists have created sentences from brain activity linked to handwriting and paves the way for more sophisticated devices to help paralysed people communicate faster and more clearly.
The man, known as T5, who is in his 60s and lost practically all movement below his neck after a spinal cord injury in 2007, was able to write 18 words a minute when connected to the system. On individual letters, his “mindwriting” was more than 94% accurate.Advertisementhttps://a835f98c50ad0aa11fed546d096364b8.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html
Frank Willett, a research scientist on the project at Stanford University in California, said the approach opened the door to decoding other imagined actions, such as 10-finger touch typing and attempted speech for patients who had permanently lost their voices. “Instead of detecting letters, the algorithm would be detecting syllables, or rather phonemes, the fundamental unit of speech,” he said.
Amy Orsborn, an expert in neural engineering at the University of Washington in Seattle, who was not involved in the work, called it “a remarkable advance” in the field.
Scientists have developed numerous software packages and devices to help paralysed people communicate, ranging from speech recognition programs to the muscle-driven cursor system created for the late Cambridge cosmologist Stephen Hawking, who used a screen on which a cursor automatically moved over the letters of the alphabet. To select one, and to build up words, he simply tensed his cheek.
Hawking’s system was a big improvement on the painstaking process used by Jean-Dominique Bauby, the late editor-in-chief of French Elle, to write his 1997 memoir, The Diving Bell and the Butterfly. Bauby had a massive stroke in 1995 that left him “locked-in”, able to blink only his left eyelid. He dictated the entire book by having the freelance editor Claude Mendibil read the alphabet aloud and blinking when she reached the next letter he wanted. For all the progress made since then, researchers have long dreamed of more efficient systems that tapped directly into the brain.
In the case of T5, nine years after his accident he enrolled on a clinical trial called BrainGate2 to investigate the safety of brain-computer interfaces (BCIs). These are small, implantable computer chips that read electrical activity straight from the brain. The man had two computer chips, each the size of a baby aspirin and bearing 100 electrodes, placed on the left side of his brain where neurons send signals to control the right hand.
Willett and his colleagues asked T5 to imagine he was holding a pen above a pad of paper and then to try to write individual letters of the alphabet, even though he could not move his arm or hand. As he tried, they recorded activity from the brain region that would have controlled his movements.
The scientists found that more than 10 years after the accident, the man’s brain still produced distinct patterns of neural activity for each letter and various punctuation marks.
These recordings, and others taken as T5 tried to write out example sentences, were used to train an artificial intelligence algorithm. Many sessions later, the algorithm could predict in real time which letter the man was trying to write with 94.1% accuracy. When the scientists added autocorrect the accuracy rose to 99%.
During the sessions, T5 often felt that the imaginary pen in his hand was moving across the page and tracing out letters, and that he could “write” faster if he kept letters small, Willetts said.
Some letters were harder to distinguish than others, according to the study in Nature. The letters r, h and n, for example, require similar movements and so similar brain activity.
One unknown is how well the algorithm might work for languages not based on the Roman alphabet. For example, Tamil has 247 letters, many of which look similar, which could confuse the algorithm.
It will be some time before such brain-reading systems are ready for wider use. In an accompanying commentary, Orsborn and Pavithra Rajeswaran, also at the University of Washington, write that implantable BCIs “will need to provide tremendous performance and usability benefits to justify the expense and risks associated with implanting electrodes into the brain”.
Orsborn said: “This study is a remarkable advance for intracortical brain-computer interfaces because it achieves a huge leap in typing speed and accuracy.
“While this gives us many reasons to be optimistic about the future of BCIs, challenges remain to develop systems that we can use for daily life. For instance, they demonstrated their algorithms in one person for a brief time. How we extend this work to assure the algorithms work well every day and for everyone is an exciting new challenge.”
BBC AND UK ARTS COUNCILS CELEBRATE THE WORK OF DISABLED ARTISTS WITH CULTURE IN QUARANTINE COMMISSIONS
A press release:
- The BBC, in partnership with Arts Council England, Arts Council of Northern Ireland, Arts Council of Wales and Creative Scotland has commissioned film and audio works from twelve disabled artists to be hosted across BBC platforms this summer.
- Commissions include a day in the lockdown life of blind comedian Jamie MacDonald, drama inspired by the work of award-winning journalist Frances Ryan, a short film from Deaf rapper Signkid, an adaptation ofperformance poet Alice McCullough’s one-woman show Earth to Alice,and theatre show Louder is Not Always Clearer byDeaf performer Jonny Cotsen.
Twelve D/deaf, neurodivergent and disabled professional artists based in England, Northern Ireland, Wales and Scotland have been commissioned to produce new film and audio works for BBC platforms this summer.
The commissioning programme is part of BBC Arts’ Culture in Quarantine initiative, which has brought the arts into people’s homes during lockdown. The twelve new commissions will champion the work of disabled artists by helping them produce work when some may have been self-isolating, and provide a platform to explore their experiences of living through Covid-19.
The programme was established in a partnership between BBC Arts, Arts Council England, Arts Council of Northern Ireland, Arts Council of Wales and Creative Scotland to mark the 25th anniversary of the passing of the Disability Discrimination Act into law, forming part of wider disability programming across the BBC.
The film and audio works commissioned include performance dramas, dance, comedy, spoken word poetry and animation, with the majority of artists highlighting aspects of the disabled experience of living through the pandemic.
Commissions were selected by a panel including representatives from BBC Arts, Arts Council England, Arts Council of Northern Ireland, Arts Council of Wales, Creative Scotland, Unlimited and the UK Disability Arts Alliance.
Lamia Dabboussy, BBC Head of Arts said: “This batch of commissions from artists across the country showcases the breadth of inspiring work we’ve all missed experiencing over this past lockdown year. I’m thrilled that, as part of Culture in Quarantine, these pieces will be brought to life across BBC platforms. It’s imperative that D/deaf, neurodivergent and disabled professional artists are supported to carry on making brilliant work, as the constraints and continuing effects of this pandemic threaten to silence their vital creative voice.”
The new commissions are:-
- SILENT WORLD, a short music film by Deaf musician Signkid, using rap, spoken word and Signkid’s innovative ‘sign-slang’ to creatively explore how living in a silent world has intensified during the Covid-19 pandemic.
- Hen Night, a shortfilm by award winning theatre and screen writer/director Vici Wreford-Sinnott, inspired by the writing of award-winning journalist Frances Ryan. Jessica has just had her hen night – a last night of freedom but not in the ways she, or any of us, might have imagined.
- Arising out of lockdown, Spectrum Soundsby Andrew Hugill, a collection of seven short pieces of music, associated with the colours of the autistic spectrum.
- Face It, filmedcomedy dramamonologues by writer Miranda Walker about two women exploring how they feel about their faces in the modern swipe-right world, and the impact of wearing face masks to protect against Covid-19. Produced by Michaela Hennessy-Vass.
- How to Thrive in 2050! 8 Tentacular Workouts for a Tantalising Future! Film by artist Kai Syng Tan. Acall for action for a more creative, equitable and neuro-fantastic future by a ‘human-octopussy’.
- Film adapted from her one-woman show Earth to Alice, written and performed byBelfastpoet and stand-up comedian Alice McCullough, about navigating the twists and turns of bipolar disorder during the Covid-19 pandemic.
- Pandemic Parenting: Pandemonium, dance theatre film by Irish playwright Shannon Yee, exploring the unique challenges for parents of newly born and young children during lockdown.
- The Cat, The Mouse and The Sausage, an animationof a Grimm’s Brothers fairy tale by award-winning filmmakerJoel Simon.
- Film adaptation ofstage show Louder is Not Always Clearer, created by Mr and Mrs Clark and performed by Deaf artist Jonny Cotsen, an honest portrayal of the vulnerability of a Deaf man in a hearing world.
- Complexity of Skin, a dance filmco-directed, written, choreographed and performedby Matthew Gough and Krystal S. Lowe, exploring touch in periods of isolation and set in a flat during lockdown.
- Blind-sided, a radio comedy-drama of a day in the lockdown life of blind comedian Jamie MacDonald as he leaves the familiarity of his home in Glasgow.
- AISLE by Ellen Renton and Jess Fig, ashort film combining poetry and illustration exploring the disabled experience of going to the supermarket during the pandemic.
Darren Henley, Chief Executive of Arts Council England said: “Culture and creativity have been lifelines for many of us throughout the pandemic, so we’re excited to support these commissions, which will encourage D/deaf, disabled and neurodivergent artists to explore their experiences of lockdown, and ensure audiences can continue to enjoy even more brilliant cultural work across BBC platforms.”
Gilly Campbell, Head of Community Arts and Education, Arts Council of Northern Ireland commented: “The Arts Council of Northern Ireland is proud to partner with BBC Arts and The Space to offer three artists from Northern Ireland the opportunity to create new work as part of BBC Arts’ Culture In Quarantine initiative. Alice McCullough, Shannon Yee and Joel Simon are hugely talented voices in the arts sector here in Northern Ireland and we’re delighted that their work will be championed on a UK-wide platform, offering a significant increase in profile for these artists.”
Minister, Deirdre Hargey MLA, Department for Communities, NI Executive said: “This is a very important project and a great opportunity to support our D/deaf disabled artists to develop professionally and create new work that can be showcased locally, nationally and internationally.”
Diane Hebb, Director of Arts Engagement, Arts Council of Wales said: “In this extraordinary year when the impact of the pandemic has had such a disruptive and alarming impact on so many lives, particularly the lives of our most vulnerable people, it’s more important than ever to support and showcase the work of our inspirational creative artists. We are delighted to see our own Wales based artists included in this programme of sensitive and provocative work and hope that audiences across the UK will be inspired by their resilience, creativity and incredible talent.”
Iain Munro, CEO, Creative Scotland commented: “Creative Scotland is thrilled to support this incredible range of talented artists and inspiring commissions as part of our partnership with BBC Arts and The Space, bringing the work of talented D/deaf, neurodivergent and disabled artists to BBC platforms. We celebrate the way diversity of thought and a diversity of experience feeds innovation and creativity and are delighted that thanks to National lottery players, audiences will enjoy and be inspired by the wide range of stories, perspectives and experiences supported through this initiative.”
Each of the commissioned artists will be assigned an Executive Producer from digital support agency The Space, in partnership with Unlimited, an arts commissioning programme that enables new work by disabled artists to reach UK and international audiences. The Executive Producer will mentor and support the artists throughout production and delivery of their work to BBC platforms this summer.
These commissions build on the success of BBC Arts Culture in Quarantine artists’ commissioning strand, launched in April 2020 by BBC Arts and Arts Council England, which invited artists to give a creative response to the challenges of lockdown. A total of 25 commissions were produced, which achieved audiences in the millions across BBC and social platforms.
DWP Denies Using Algorithms For LEAP Review, But Admits To Using Automated ‘Business Rules’
With many thanks to Benefits And Work.
The DWP has denied using algorithms in the course of making LEAP decisions that have prevented many thousands of PIP claimants from getting arrears, but appear to have admitted to using ‘business rules’ instead. However, there is a big question mark over how ‘business rules’ differ from algorithms and we are now looking for a specialist who can help us investigate this further.
As regular readers know, the LEAP review was set up by the DWP to identify claimants who had missed out on large sums of PIP, from £3,000 to £12,000 each, because the department got the law wrong.
Originally, the DWP estimated that 164,000 claimants were due arrears of PIP due to an error in relation to the mobility component. Yet, with well over half of 1.6 million claims allegedly reviewed, the DWP have only made awards in 3,700 cases.
Benefits and Work made a Freedom of Information request for the Data Protection Impact Assessment (DPIA) carried out in connection with the use of Automated Decision Making (algorithms) for the LEAP review.
If the DWP had used algorithms, there would be a legal duty to carry out a DPIA.
However, the DWP have replied that no such document exists and instead referred us to a parliamentary answer by Baroness Stedman-Scott in response to a question about which algorithms the DWP use to decide on eligibility for benefits:
“Decisions on applications for welfare payments and services are made by the Department colleagues. The Department does not use algorithms to make decisions in this way. The Department does use business rules, some of which are automated and focus on everyday repetitive processing tasks so that colleagues can spend more time supporting vulnerable claimants.”
We know that the DWP have drawn up a list of the conditions they consider are most likely to result in an award of arrears under LEAP. We also know they have a table of which age groups are most likely to get an award.
But that was how they arrived at a figure of 164,000 claimants being eligible.
Clearly other rules must be being used as well to exclude claimants from being considered.
So, what we don’t know is when a set of ‘automated business rules’ becomes an algorithm.
A business rule defines or constrains some aspect of business and always resolves to either true or false . . . For example, a business rule might state that no credit check is to be performed on return customers. Other examples of business rules include requiring a rental agent to disallow a rental tenant if their credit rating is too low, or requiring company agents to use a list of preferred suppliers and supply schedules.
Elsewhere Wikipedia explains that:
The programs designed specifically to run business rules are called rule engines. More complete systems that support the writing, deployment and management of business rules are called business rules management systems (BRMSs).
Many commercial rule engines provide the Rete algorithm, a proprietary algorithm that embodies many of the principles of Rete.
Why automate decisions?
Automating decisions through a business rules management system (BRMS) enables businesses to create and manage business logic independently from applications and processes. Businesses can also leverage AI and machine learning to make decisions with precision, targeting each customer interaction intelligently.
Benefits and Work is not giving up on finding out why well over 100,000 PIP claimants are being deprived of what appears to be their legal entitlement. If there is anyone out there with the expertise to explain the differences between automated business rules and algorithms from a technical or legal point of view, please do drop us an email at admin@benefitsandwork.co.uk
Bangladeshi men have been hit hard by the pandemic – in terms of higher death rates compared to other communities, shut down industries and job losses. But with lockdown easing, many fear that the impact of the pandemic on their mental health may be overlooked.
Imran Khan lost his father earlier this year to coronavirus. While he reached out to this GP for support, other Bangladeshi men are less likely to do so, says psychologist Shah Alam. He believes Islam could play a key role in getting men to open up and reducing the stigma around mental health issues. Imam Sheikh Abdullah Hasan has been exploring this – he has been providing mental health toolkits to more than 200 imams and scholars around the UK.
If you are affected by the issues in this story, help and support are available at BBC Action Line.
EastEnders has been working with the mental health charity Mind on a storyline focusing on schizophrenia, producers confirmed on Monday.
The BBC soap asked Mind to offer insight into the experiences of its character Isaac Baptiste – a black man grappling with the physical and social issues associated with the condition.
Actor Stevie Basaula has said it’s “a privilege” to help tell his story.
The announcement coincides with the start of Mental Health Awareness Week.
The show’s hook-up with the charity was designed to help the actors, producers and writers learn more about “the emotional and social experience of living with schizophrenia, particularly looking at attitudes towards mental health in African Caribbean communities,” EastEnders bosses said.
Mind research suggests black men are far more likely than others to be diagnosed with severe mental health problems, and are also far more likely to be sectioned under the Mental Health Act.
However, up until 11-years-old, black boys don’t have poorer mental health than others of their age.
Mind says there are multiple reasons for this including stigma, cultural barriers, and systemic discrimination, all of which are more directly experienced by black boys and young black men as they get older.
The ongoing storyline is, over the coming weeks, intended to encourage “vital conversations about the realities of living with a mental health problem”.
What is schizophrenia?
Schizophrenia is a severe long-term mental health condition. It causes a range of different psychological symptoms.
Doctors often describe schizophrenia as a type of psychosis. This means the person may not always be able to distinguish their own thoughts and ideas from reality.
Symptoms can include hallucinations, delusions, muddled thoughts and a loss of interest in everyday activities.
Schizophrenia does not cause someone to be violent and people with schizophrenia do not have a split personality.
Source: NHS
For the role, Basaula drew on the real life experiences of a Mind volunteer named Antonio, as well as lessons from Mind’s Young Black Men programme.
He described the storyline as being one that is “very close to my heart”.
“I hope it will start a dialogue for people to have conversations about mental health and that anyone living with the condition will feel seen,” said the actor.
“Working with Mind has been so useful, I spoke to a young man who bravely shared his story and it was inspiring to learn how he’s managing his condition.”
He added: “There’s so much we think we know about schizophrenia, but it’s often not the reality for people living with the condition.
“I hope that anyone engaging with Isaac’s story will gain a better understanding and can approach someone they know that may be struggling from a more positive place.”
Viewers have already seen Isaac share his diagnosis with his dad Patrick, and his mum Sheree’s resistance to him making it public knowledge – due to fears around stigmatising views from friends and family.
Isaac’s own fears around the circumstances of his brother’s death and his dad taking part in a medical trial will lead to him to questioning his own diagnosis and abruptly stopping taking his medication.
EastEnders executive producer Jon Sen said that working with the charity was “imperative in ensuring we tell Isaac’s story truthfully”.
“There’s a multitude of layers to this storyline and Mind’s expertise has been crucial as we explore Isaac’s experience,” said Sen.
A press release:
UK-wide activity to reach the 1.2 million eligible people who do not currently use the Motability Scheme
People with disabilities and their families across the UK will be able to watch the first ever television advert for the Motability Scheme as its national awareness campaign ‘Everyday Freedom’ pilots this spring. Alongside a print, digital and PR campaign, the national television advert aims to boost awareness and understanding of the Scheme amongst those who are eligible to join and their families.
Currently only one-third of eligible disabled people are enjoying the benefits of a worry-free lease package through the Motability Scheme, while 1.2 million people are estimated to not be making the most of the everyday freedom it can offer. Providing affordable, reliable cars to those with disabilities, the Motability Scheme has spent over 40 years supporting people to maintain their independence.
After a successful regional pilot, this national pilot will see the television advert run across ITV, Channel 4 and selected Sky channels for around three months. This will be supported by a radio, digital and national newspaper campaign, and a range of content on social channels. The campaign will go live this month. You can view the television advert here.
Delia Ray, head of marketing for Motability Operations, which operates the Scheme under contract to Motability, a national disability charity, said:
“We are proud to be providing worry-free mobility to over 630,000 customers across the UK. However, we know that over a million more people with qualifying allowances could also access the Scheme and benefit from the freedom and independence it offers, but many are unaware of how it could help them.
“This campaign therefore aims to showcase what the Scheme offers to many more people with disabilities, and their families and carers, encouraging them to find out more. And television, with its powerful impact and potential to reach many thousands of viewers, is at the heart of this.
“When customers talk about the impact of the Scheme, they frequently use words such as independence and freedom. It is this essence that has inspired our Everyday Freedom campaign, and we’re excited to be sharing it with more people this spring.”
Through the Motability Scheme, recipients of the Enhanced Rate of the Mobility Component of Personal Independence Payment, Higher Rate Mobility Component of Disability Living Allowance, War Pensioners’ Mobility Supplement or Armed Forces Independence Payment can choose to exchange their weekly allowance to lease a new vehicle.
Leasing a car, scooter or powered wheelchair through the Motability Scheme is simple and affordable. The three-year vehicle lease package includes insurance for up to three named drivers, RAC breakdown assistance, vehicle servicing and maintenance, as well as tyre and windscreen repair and replacement.
Motability Operations, the company which operates the Scheme under contract to Motability, the Charity, offers affordable, convenient, worry-free motoring to over 630,000 disabled customers and their families. It has built a strong reputation, achieving high standards for customer service and engagement, and provides cars, powered wheelchairs and scooters that lead the way in value-for-money, effectiveness and reliability. It pays no shareholder dividends, meaning that all profits are reinvested for the benefit of people with disabilities.
Please visit motability.co.uk for more information or call 0800 953 7000.
A press release:
The National Deaf Children’s Society has welcomed the Government’s announcement that face masks will no longer be recommended anywhere in school for pupils in England from Monday, May 17th. They will also not be recommended for staff in classrooms.
Ian Noon, Head of Policy at the National Deaf Children’s Society, said:
“Today’s announcement will mean thousands of deaf children and young people can breathe a huge sigh of relief. For more than a year, they’ve struggled against isolation, loneliness and inaccessible online lessons, only to be hit with a whole new set of challenges caused by face masks when they returned to school.
“Public health must always be the priority, but deaf young people have repeatedly told us that face masks left them seriously struggling to socialise, understand their teacher and maintain their mental health during what was an extremely challenging period of their lives.
“Taking face masks out of classrooms and highlighting the benefits of transparent ones are both signs of real progress. Hopefully this heralds a new dawn for deaf children and young people, where they can be confident that their needs will now be considered whenever major decisions are made.”
DWP Faces More Legal Action As BBC Reveals 150 Benefits Related Deaths Or Episodes Causing Serious Harm
With many thanks to Benefits And Work.
The DWP is facing at least three court actions relating to the deaths of benefits claimants at the same time as the BBC has revealed that the department has carried out 150 internal reviews into the death or serious harm to claimants.
Philippa Day’s family are suing the DWP and Capita for breaches of her human rights and the harm both Philippa and her family suffered as the result of the way her PIP claim was dealt with.
Philippa took her own life after her DLA was wrongly stopped and she was required to attend a PIP face-to-face assessment, in spite of experiencing mental health issues including emotionally unstable personality disorder (EUPD), anxiety, depression and agoraphobia.
As already reported, the High Court is to hear an application for a fresh inquest into the death of Jodey Whiting.
Jodey, who had multiple physical and mental health conditions, was wrongly told to attend a work capability assessment, which she was unable to do. Jodey took her own life shortly after receiving letters telling her that her benefits would stop.
The family of Errol Graham have submitted an application to the Court of Appeal in an attempt to overturn the High Court decision that the DWP’s safeguarding policy is lawful.
Errol Graham was 57 when he starved to death in June 2018. His ESA and housing benefit were stopped after he failed to attend a work capability assessment. This was done without checking on his mental or physical wellbeing, even though he was known to have serious mental health issues.
Meanwhile, the BBC has revealed that since 2012 the DWP has carried out more than 150 reviews into cases where claimants suffered serious harm or died in circumstances that involved the department.
60 peer reviews were carried out by the DWP between 2012 and 2014.
From 2015 the DWP adopted a new system of ‘internal process reviews’ and 84 of these have taken place with another six soon to be completed.
The BBC has also collated press reports on 82 people who died after DWP activity, such as their benefits being stopped. 35 of these claimants had mental health issues.
You can read more about this story on the BBC website, which also has a dataset of 107 people whose deaths were allegedly linked to DWP activity.
There is more coverage in the Guardian
There is also more information on the Leigh Day website.
Tech entrepreneur Elon Musk has revealed he has Asperger’s syndrome while appearing on the US comedy sketch series Saturday Night Live (SNL).
The 49-year-old told viewers he was “the first person with Asperger’s” to host the long-running programme – to loud cheers from the audience.
People with Asperger’s interpret the environment around them differently to other people.
It is thought to be the first time Mr Musk has spoken about his condition.
The tech boss was guest hosting the sketch show – a coveted role that has been filled by an array of celebrities since SNL’s inception in the 1970s. These include Adele, Chris Rock, Ringo Starr, and Will Ferrell.
“I don’t always have a lot of intonation or variation in how I speak… which I’m told makes for great comedy,” he joked in his opening monologue. “I’m actually making history tonight as the first person with Asperger’s to host SNL.”
His comment prompted a round of applause from the studio audience.
Some people on social media, however, questioned his claim. They pointed out that the comedian Dan Aykroyd, who has spoken publicly about his experience with Tourette’s and Asperger’s syndrome, has previously hosted SNL.
Mr Musk, who has more than 53 million followers on Twitter, also joked about his use of social media. He has faced criticism and even legal threats over his tweets in the past.
“Look, I know I sometimes say or post strange things, but that’s just how my brain works,” he said.
“To anyone who’s been offended, I just want to say I reinvented electric cars, and I’m sending people to Mars in a rocket ship. Did you think I was also going to be a chill, normal dude?”
What is Asperger’s syndrome?
- Asperger’s syndrome is a lifelong disability which affects people in many different ways
- Some may choose to keep using the term, while others may prefer to refer to themselves as autistic or on the autistic spectrum
- Those with the syndrome may have difficulties interpreting verbal and non-verbal language, and may need more time to process information
- They may also have trouble expressing their feelings in a conventional way. But they can be more empathetic or emotionally aware than non-autistic people
- Many people with Asperger’s syndrome have intense and highly focused interests – some channelling them towards a successful career
The billionaire also joked about his son’s unusual name – he and the singer Grimes announced the birth of their first child, X Æ A-12 Musk, last year. “It’s pronounced cat running across keyboard,” Mr Musk said.
Later in the programme, the SpaceX CEO spoke about the cryptocurrency Dogecoin.
The currency was created in 2013 by a pair of software workers, and earlier this year it jumped in value by 50% after Mr Musk dubbed it “the people’s crypto”.
It uses a Shiba Inu dog as its mascot and is based on a meme featuring the animal.
Mr Musk described the currency as “an unstoppable vehicle that’s going to take over the world” – but later said it was a “hustle” which prompted an almost immediate fall in value.
With no intrinsic value like gold or land, and no ability to generate an income, cryptocurrencies are extremely volatile and can crash as fast as they rise. This makes them hard to value and makes their prices susceptible to tips from backers such as Mr Musk.
NBC, which airs SNL, said the episode was streamed live on YouTube to more than 100 countries.
As cases of domestic abuse rise during lockdown, people are forced to spend more time with their abusers. As Sara Cincurova explores, disabled victims can face particular challenges.
“When you are disabled and live with your abuser, you are scared to talk,” says Ebere, a disabled survivor who was abused for years. “Particularly if you are trapped with him at home, or reliant on his money or care.”
Ebere, not her real name, has faced abuse throughout her life.
Born in Nigeria, she contracted polio as a baby and became a wheelchair-user. Her parents considered her disabilities a “curse” and physically and mentally abused her.
“I was treated like nothing. I was beaten up and threatened, unlike my siblings, without disability, who were treated with respect.”
Aged seven, Ebere was sexually assaulted by a family member. But when she tried to report it “my parents told me they would kill me if I spoke about it”. She felt “defenceless”.
‘I thought he was a gentleman’
According to UNICEF, disabled children are four times more likely to experience abuse and three times more likely to experience sexual violence compared to their non-disabled peers.
Eventually, Ebere fled to the UK on a student visa to study social care. “I presumed that I’d escaped abuse forever because I had fled my family,” she says, but it wasn’t to be.
She soon met a man and started a relationship.
“I thought he was a gentleman, a prince charming. But he turned out to be a perpetrator and a gambler. He became controlling and started raping me.
“Experiencing abuse for the second time affected me so much,” she says. “No-one knows what is happening behind those walls. I didn’t want to live anymore.”
Ebere didn’t know how to escape until a friend put a small phone in her incontinence pad so her ex-partner wouldn’t find it. It enabled her to call the police, and her partner was arrested.
But once she was free, she found it difficult to find wheelchair-accessible accommodation. Many refuges had steps into the building or rooms and doorways could be too narrow for her wheelchair. She also struggled to find places which had the resources to support her mental health needs.
“I stayed in hostels, hotels and refuges, but I wasn’t happy. I didn’t feel like there was inclusivity,” she says.
‘I experienced hell’
Slowly, over five years, Ebere rebuilt her life and now has her own home.
“I tell my story because I experienced hell and I don’t want anyone to go through what I had to go through.”
Lauren Avery, from Minority Rights Group International, which protects the rights of minorities says disabled women who have another intersecting identity, such as being a refugee, can face double discrimination.
“Firstly, they face a higher likelihood of experiencing violence. Secondly, they face barriers in reporting violence and accessing services.”
Avery says reports from around the world show violence against disabled women has intensified during lockdown.
Although no figures have yet been compiled, Women’s Aid said, pre-pandemic, disabled women were three times more likely to experience domestic abuse and more likely to experience multiple forms of abuse in their lifetime, compared to non-disabled women.
Avery says these figures need to be reflected in the support available.
“A one size fits all approach is clearly not working,” she says. “All clients should have the opportunity to say what their needs are as soon as they engage with domestic violence services. Then efforts can be made to make adjustments to meet these needs.”
Emma Dalmayne, an autistic woman from London, was 17 years old when she fled domestic abuse with her eight-month-old baby.
“I had been subjected to severe physical abuse, but I was also mentally abused. I wasn’t allowed to look out of the window or to use a phone. But I didn’t realise this was violence,” she says.
“Many autistic people might not realise that you don’t have to be hit to be abused.”
Emma too had to carefully consider how to escape.
“The night before I left, I was subjected to one of the worst beatings. I had made ‘too much noise’ while making my son a bottle in the kitchen and was kicked around on the floor like a football.”
The next morning, Emma went to the Post Office to collect her benefits – the only place she was allowed to go alone. “I hid a spare bottle and two nappies in the buggy, and left together with my son.”
On her way, she called a friend, who in turn called the police. Officers met them on the high street.
“I showed them my injuries, the bruising on my back and chest, and they took us to the local housing department,” Emma says.
When she arrived at the refuge, she sobbed with relief and fear. But she says her autism made the situation confusing and she would have liked more support and “clear instructions” about what to do next.
“The police should accompany you to the refuge, especially if you have difficulty navigating public transport,” she says. “Things should also be made more clear by refuge staff, such as directions to amenities in your new area.”
Emma agrees with Avery that support cannot be a one-size approach, especially if disability is involved.
During her violent relationship she was starved and her stomach had shrunk so she was unable to eat at the refuge. “But no-one asked me about it, and I was unable to communicate,” she says.
For Emma, offering up information without first being asked, is something she struggles with. As a result, she didn’t receive any therapy or treatment.
“Don’t assume that just because someone is verbal, they can communicate. When people look at me, they think ‘she’ll be fine, she can talk, she can explain what happened’. But I couldn’t.”
She says support workers should be trained to support disabled people.
“We might need help with budgeting and we should also see a dietician and a doctor when we are first brought in.
“We need to be put in a safe, quiet room, and be protected from further trauma, noise, and overwhelm,” she says.
Over-stimulation can lead to some autistic people experiencing meltdowns or shutting down.
When she left the refuge, Emma started to advocate for women who had faced domestic violence. She also became CEO of Autistic Inclusive Meets, an organisation focused on creating a community for autistic people.
“This is a matter dear to my heart. As an autistic person, it is so easy to get drawn into a situation where you blame yourself for the abuse. Providing help to disabled people is so important. Love shouldn’t hurt.”
Emma’s tips for escaping abuse
- Pack a bag with essentials like a change of clothes and ID. If a bag is too risky, put the clothing in a pile as “clean washing” and the documents in an envelope taped under a drawer
- Keep a paper list of phone numbers of people you want to keep in contact with
- Pick up any prescriptions or medication before leaving as you will be moved out of area.
- Don’t tell anyone your plans, they may unintentionally slip up
- If you call the police to help you leave, it may save time to head to the police station or meet them nearby
- Wear sensible shoes
- Take one treasured toy for your child – you will not be able to carry much – and any favourite photos – they may be destroyed once you leave
A seven-year-old Belfast schoolboy has been involved in a BBC accessible music project for Deaf Awareness Week 2021.
Jensen Rea, who is deaf in one ear, was asked to be involved in the BBC SignSong after appearing in a BBC News NI video in January.
The Dundonald Primary School pupil helps teach British sign language (BSL), often dressed in elaborate costumes, to other children on YouTube.
The BBC music project, which was recorded remotely over lockdown, involves almost 100 people signing to Sing, a song by Gary Barlow and Andrew Lloyd-Webber.
The video was made in partnership with BBC Ability, Children in Need, the BBC’s Philharmonic Orchestra, BBC Singers and people from across the UK.
You can watch the full version of the BSL SignSong music video here.
The Grenfell Tower landlord did not create escape plans for disabled residents and instead relied on telling people to “stay put” despite recent fires in two of its other towers requiring evacuations, the inquiry into the 2017 disaster has heard.
Teresa Brown, the director of housing at the Kensington and Chelsea Tenant Management Organisation (TMP) from 2014 to 2018, was close to tears when she admitted that the landlord had not considered personal evacuation plans to get the most vulnerable people out.
The “stay put” policy in place at Grenfell Tower has already been identified by the inquiry as increasing the death toll. Fifteen of the 37 residents classed as vulnerable in the block were among the 72 killed.
Brown was questioned about fires in 2015 and 2016 at Adair Tower, a Royal Borough of Kensington and Chelsea council block, and Shepherds Court, in nearby Hammersmith and Fulham, which both required evacuations. Counsel to the inquiry, Andrew Kinnear QC, asked if they prompted her to consider the need for evacuation plans for vulnerable residents elsewhere.
“I’m afraid it didn’t because in my experience the fire brigade arrived and they made the decision to move from stay put to evacuation and it worked,” she said.
Brown said the landlord was following national guidance published by the Local Government Association that said “stay put works”.
“It is easy to look back in hindsight but we were operating according to that guidance in a way that other organisations across the country were,” she said.
Lawyers for the bereaved and survivors have described the fire as “a landmark act of discrimination against disabled and vulnerable people”.
Although 52 of the 120 flats had disabled occupants, a TMO document on the night of the fire only listed 10 disabled residents.
Hisam Choucair, whose mother, Sirria, used a stick and was among six of his family members to die, has told the public inquiry he was “shocked that there does not appear to have been any consideration of my mother’s needs” when it housed her on the 22nd floor.
Mahboubeh Jamalvatan, a disabled mother of two who lived on the third floor, said she had had to bump down the stairs on her bottom to escape.
Kinnear asked if Brown’s team was aware it could refer residents for evaluation of a personal evacuation plan. She said no, adding “because of our stay put policy – we weren’t expecting to evacuate”.
She said the London fire brigade did not raise the need for the evacuation plans at Grenfell, adding: “If they had I would have done it.”
The inquiry saw an internal document about the landlord’s “vulnerability policy” which described the process of drawing up personal emergency evacuation plans as “mainly ad hoc and self-nominated”.
Brown said they did not publicise the fact that residents could ask for a plan. The inquiry continues on Monday.
Dear Editor,
Prioritising your mental health is important whatever your situation, but when you are living with a disability, it’s essential. Post pandemic, many people may be feeling heightened levels of anxiety – the fear of coronavirus and the consequent isolation has meant our mental health has taken a knock. That’s why for this year’s Mental Health Awareness Week (10th – 16th May), Revitalise would like to share with your readers some of the best ways disabled people can look after their mental health.
Keep Active – Exercise is great for the mind, getting yourself moving triggers an endorphin rush to the brain that is almost guaranteed to make you feel happier. We’re not suggesting you run a marathon around your living room, but stretching in the garden or heading outside for some fresh air will do wonders.
Stay Social – As the rest of the world opens back up post-lockdown, many vulnerable people are continuing to isolate. Whilst you might not be able to see friends and family in person, one good thing about 2021 is technology means you can still see them virtually. Make sure to schedule plenty of Zoom catch ups or what about a game of virtual Scrabble with a friend?
Get Creative – Whether it’s reading, writing, playing music, painting or dancing, always celebrate your creativity! Perhaps you’ve always wanted to learn a new skill, or maybe there’s an old passion you’ve let slip – now is the time to focus on it. The arts industry has really suffered over the course of the pandemic, but we’re sure it will bounce back bigger and better than ever.
Take a Break – This might be easier said than done, especially if you have young children or are a family carer but taking some time to rest and refresh is so important – not only for your sake, but for the sake of your loved ones. A hot bath and 20 minutes to yourself will do wonders, and a good book is a great way of escaping reality for half an hour or so too!
Make Friends – If you’re feeling the strain, why not take a well-deserved break with Revitalise and let us help ease the pressure. Our staff and fellow guests are a fantastic and friendly bunch, and by holidaying with us you’ll become part of a community of likeminded people who make you feel at home and able to be completely yourself. Many of our guests return time and time again to reunite with old friends (be that fellow guests, team members or volunteers) and always have fun making new ones along the way too.
Revitalise Sandpipers in Southport is offering discounted rates until the 28th June and can provide accessible transport across the country. So, anyone who feels they could benefit from our support, need only ask.
Devon Prosser, Revitalise
www.revitalise.org.uk
6th May 2021
Prioritising your mental health is important whatever your situation, but when you are living with a disability, it’s essential. Post pandemic, many people may be feeling heightened levels of anxiety – the fear of coronavirus and the consequent isolation has meant our mental health has taken a knock. That’s why for this year’s Mental Health Awareness Week (10th – 16th May), Revitalise would like to share with your readers some of the best ways disabled people can look after their mental health.
Keep Active – Exercise is great for the mind, getting yourself moving triggers an endorphin rush to the brain that is almost guaranteed to make you feel happier. We’re not suggesting you run a marathon around your living room, but stretching in the garden or heading outside for some fresh air will do wonders.
Stay Social – As the rest of the world opens back up post-lockdown, many vulnerable people are continuing to isolate. Whilst you might not be able to see friends and family in person, one good thing about 2021 is technology means you can still see them virtually. Make sure to schedule plenty of Zoom catch ups or what about a game of virtual Scrabble with a friend?
Get Creative – Whether it’s reading, writing, playing music, painting or dancing, always celebrate your creativity! Perhaps you’ve always wanted to learn a new skill, or maybe there’s an old passion you’ve let slip – now is the time to focus on it. The arts industry has really suffered over the course of the pandemic, but we’re sure it will bounce back bigger and better than ever.
Take a Break – This might be easier said than done, especially if you have young children or are a family carer but taking some time to rest and refresh is so important – not only for your sake, but for the sake of your loved ones. A hot bath and 20 minutes to yourself will do wonders, and a good book is a great way of escaping reality for half an hour or so too!
Make Friends – If you’re feeling the strain, why not take a well-deserved break with Revitalise and let us help ease the pressure. Our staff and fellow guests are a fantastic and friendly bunch, and by holidaying with us you’ll become part of a community of likeminded people who make you feel at home and able to be completely yourself. Many of our guests return time and time again to reunite with old friends (be that fellow guests, team members or volunteers) and always have fun making new ones along the way too.
Revitalise Sandpipers in Southport is offering discounted rates until the 28th June and can provide accessible transport across the country. So, anyone who feels they could benefit from our support, need only ask.
Devon Prosser, Revitalise
www.revitalise.org.uk
A severely disabled child who was forced to go into hotel quarantine after returning from a “red list” country has been allowed to return home to complete their period of self-isolation after a legal challenge.
Before entering the UK, the child’s parents had applied for an exemption on medical grounds, providing evidence of their child’s severe and complex needs, but, having received no decision, they had to enter hotel quarantine on arrival. Their solicitors, Bindmans LLP, said the application was then refused without reasoning.
They made an urgent application to the high court for an order permitting the family to return home to complete the quarantine. They provided further evidence from the child’s treating psychologist of why their particular severe needs could not be met in hotel quarantine and how it would probably lead to a severe deterioration in their condition. After seven days stuck in hotel quarantine, the family won their case.Advertisementhttps://a2a64f310b30236a30dc37b7e1a6dca6.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html
Theodora Middleton, a solicitor in Bindmans’ public law team, said: “We are pleased that our client has now been permitted to return home. However, it is deeply concerning that highly vulnerable individuals such as our client are being subjected to the hotel quarantine system with little apparent consideration of how it will affect them. Our client and our client’s parents have endured unacceptable suffering, and potentially lasting damage, during the period that they were required to remain at the hotel, and recently updated exemption guidelines set a bar for eligibility for exemption that goes beyond the law.”
She urged the health secretary, Matt Hancock, to “ensure that his newly created and draconian powers to curtail liberty are being exercised with utmost care and scrutiny”.
Under emergency coronavirus legislation, on arrival, passengers entering the UK from “red list” countries are transferred by coach to a hotel where they are required to remain for at least 10 days. They are allowed out of their rooms in “very limited circumstances”, including exercise if granted permission by security guards enforcing the quarantine, with windows reportedly sealed shut.
As well as medical grounds, other exemptions include for people arriving to attend boarding school and representatives of a foreign country.
Bindmans made an application on behalf of its client over the weekend. It said the health secretary was given time to obtain independent medical evidence but did not do so and eventually conceded 15 minutes before a further hearing and three days after being presented with medical evidence form the claimant.
The child’s barrister, Adam Wagner, tweeted: “The system of exemptions for medical need is helpful but only if it is applied reasonably and not, as appears here, raising the bar so high that it is unreachable.”
Campaigners are set to have a review of abortion law relating to Down’s syndrome heard at the High Court.
Heidi Carter, of Coventry, and Máire Lea-Wilson from Brentford, west London, are challenging the government over a clause in the current law which allows abortion for up to birth for a foetus with Down’s syndrome.
Mrs Carter, 25, who has the condition, said the current law is “not fair”.
The case is due to be heard on 6 and 7 July.
Currently, there is a 24-week time limit for abortion, unless “there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped” .
Mrs Carter, who campaigns under her given name of Crowter, previously wrote to Health Secretary Matt Hancock saying all non-fatal disabilities should be subject to the same standard 24-week limit.
“A baby without Down’s syndrome can be aborted up to 24 weeks, but a baby like me and James can be aborted to birth,” Mrs Carter said. “It’s downright discrimination.”
“People shouldn’t be treated differently because of their disabilities.
“The reason it’s important to me and James is because we’re someone who has Down’s syndrome and we want to show the world we have a good quality of life.”
Mrs Lea-Wilson, 32, said she was placed under pressure to have an abortion when a 34-week scan revealed her son had Down’s syndrome.
“I have two sons that I love and value equally, but the law does not value them equally,” she said.
“My motivation for taking this joint legal action with Heidi has always been simple. As a mother, I will do all that I can to ensure the fair and equitable treatment of my son, Aidan.”
Mrs Lea-Wilson said the case is “not about the rights or wrongs of abortion” but about “removing a specific instance of inequality of the law.”
Domestic Abuse And Disability: Part One
Emma Dalmayne was just 17-years-old when she fled her abusive partner with her baby. Emma, who is autistic, has experienced violence at the hands of two ex-partners and has lived in a women’s refuge. Saliha Rashid faced honour-based violence from her family. As a blind woman she thought they were being protective, until she went to university and realised their behaviour was abuse. It took her three attempts to escape.
According to the statistics, disabled people are three times more likely to experience domestic abuse – but why is this?
Emma, Saliha and Sara Cincurova, a journalist and former domestic abuse support worker, tell their stories and discuss what needs to be done to improve the situation.
Presented by Keiligh Baker.
If you, or someone you know, have been affected by domestic abuse or violence, the organisations listed on the links below may be able to help. If you are in immediate danger, you should dial 999.
Visit the BBC Action Line page for Information and Support on Domestic Abuse or the BBC Action Line page for honour violence and forced marriage.
Subscribe with BBC Sounds and say to your smart speaker “Ask the BBC for Ouch”
With many thanks to Benefits And Work.
A High Court challenge has been mounted against the failure to give a £20 uplift to claimants of legacy benefits, such as employment support allowance (ESA), in spite of the payment being given to universal credit (UC) claimants. Success could lead to payments of over £1,000 for almost two million ESA claimants.
At the start of the pandemic, the chancellor announced a £20 increase in the standard rate of UC to help claimants cope with the additional costs of the pandemic. This could include such things as face masks, hand sanitiser, home delivery charges and increased utility bills because of being at home continually.
However, claimants on exactly equivalent ‘legacy benefits’ such as ESA were not given the uplift because the DWP claimed that its IT system could not cope with the change.
The case is being brought by two ESA claimants in the support group.
They are arguing that the failure to treat them in the same way as UC claimants is discriminatory and unjustified.
There have been many objections to the discriminatory way the uplift has been applied, including by the chair of the House of Commons Work and Pensions Committee who said:
“It’s simply not right for people to miss out on support just because they happen, through no fault of their own, to be claiming the ‘wrong’ kind of benefit.”
The claimants are being represented by Osborne’s solicitors. You can read the full story on their website.
With many thanks to Benefits And Work.
The DWP document ‘Equality Analysis PIP assessment criteria’ lists over 20 conditions most likely to lead to claimants being eligible for an award of PIP arrears. It gives an insight into who the DWP is likely to be looking at when considering arrears under the LEAP review.
The original estimate by the DWP that 160,000 claimants would be entitled to arrears was based on claimants who scored four points for mobility descriptor 1b – Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant – before the MH judgement and who also had one of the conditions listed below:
- Agoraphobia
- Alcohol misuse
- Anxiety and depressive disorders (mixed)
- Anxiety disorders
- Autism
- Bipolar affective disorder (Hypomania / Mania)
- Cognitive disorders
- Dementia
- Depressive disorder
- Drug misuse
- Learning disability
- Mood disorders
- Obsessive compulsive disorder (OCD
- Panic disorder
- Personality disorder
- Phobias
- Post-traumatic stress disorder (PTSD)
- Psychotic disorders
- Schizoaffective disorder
- Schizophrenia
- Stress reaction disorders
It should be stressed that this was just the DWP’s prediction of who is most likely to be eligible. Just because your condition is not listed here, that does not mean that you are not entitled to a back payment.
Nor, if your condition is listed here does it mean that you are going to get an award. It is clear that the DWP has chosen to make very few awards indeed. At the moment, rather than the over 160,000 awards originally estimated, the DWP is on course to make around 7,000.
However, Benefits and Work is currently looking into ways the LEAP review results can be challenged and we hope to have more information for readers in the coming weeks.
You can download a copy of ‘Equality Analysis PIP Assessment Criteria’
A senior judge has ruled it is lawful for carers in specific circumstances to help clients find and pay for sex.
The ruling found it would be wrong to stop them helping a 27-year-old man with mental disabilities fulfilling a natural desire.
The landmark ruling could have major implications for others.
Ministers have been given permission to appeal the judgment because of its implications for policies on combating prostitution.
The Court of Protection, which made the ruling, is dedicated to taking decisions for people who lack the mental capacity to live independent and safe lives.
The young man at the centre of the case, known only as C, is fit and healthy but lives with carers because he needs daily help with many parts of his life.
He has autism and a genetic disorder – but Mr Justice Hayden said that after speaking to C, he found that he was happy and well-supported.
The court heard that C knew he would probably never find a girlfriend but he nevertheless wanted to experience sex – and so he had asked his carers if they could find him a sex worker who would be paid for their services.
That request led to a hearing at the Court of Protection because it was not clear to C’s carers whether they would act illegally if they agreed to help.
Under England’s complex prostitution laws, paying for sex is a not a crime – but actions that encourage its arrangement are.
C’s carers also feared they could be jailed for up to 10 years for inciting a vulnerable person into a sexual relationship.
In a landmark judgment, Mr Justice Hayden ruled that the aim of sexual offences laws was to prevent abuse, rather than stand in the way of C’s request.
If the law banned the carers from helping C, that would be discrimination because anyone else without his condition could lawfully pay for sex.
“It is important to recognise that those with mental health disorders have, in the past, effectively been prevented, by the law, from engaging in sexual relations,” said the judge.
“It is no longer the objective of the law to prevent people with mental disorders from having sexual relationships, rather it is to criminalise the exploitation and abuse of such adults by those with whom they are in a relationship of trust.”
The judge said that a second legal question – whether a paid sexual relationship would genuinely be in C’s best interests – could only be considered once a specific plan had been devised.
Lawyers for Justice Secretary Robert Buckland are now appealing the ruling. They had argued that granting permission to the carers to help C would undermine attempts to reduce prostitution by using the state’s care services to facilitate it.
But Mr Justice Hayden said the government’s objective was “logically unsustainable”.
“While it is entirely understandable that [secretary of state] would not wish to be seen to act in a way which might be perceived as encouraging prostitution, the fact remains that the act is legal.
“The secretary of state may not obstruct those who wish to participate in lawful transactions nor, logically, those who wish to help them be they carers or otherwise.”
ECB and Lord’s Taverners partnership to make disability cricket accessible in every county
A press release:
A game changing £2m partnership will make life-changing disability cricket accessible in every county in England and Wales as part of the biggest investment into a disability cricket programme.
Launched today (April 27) the landmark partnership between the Lord’s Taverners and the England and Wales Cricket Board (ECB) will see the Super 1s disability cricket programme launched in every county and help develop a more sustainable table cricket offer – increasing participation, inspiring social change, and empowering tens of thousands more young people to fulfil their potential and build life skills through the sport.
Lord’s Taverners President and former England Captain David Gower said: “This partnership is a true game-changer for the Taverners and disability cricket. This is the largest investment by a cricket board into a disability specific programme and to work with the ECB is an incredible honour. The charity’s work has proved life-changing for so many participants and we’re very excited about the opportunity to bring our work to young people in every county across the country.”
Super 1s is already positively impacting the lives of thousands of young people in 20 counties and Scotland – but this will increase to all 39 counties thanks to the collaboration between the UK’s leading youth disability sports charity and cricket’s governing body.
Nick Pryde, Director of Participation and Growth at ECB said: “We’re committed to making cricket as inclusive and diverse as possible and this partnership will be a big driving force towards that. Bringing Super 1s to every county really will change lives. It’s a fantastic way to increase accessibility and show that cricket can be a game for everyone.”
By the end of 2021, new programmes in Worcestershire, Northumberland, Devon, Wiltshire and an Eastern Counties project (Bedfordshire, Hertfordshire, Cambridgeshire) will have been launched with the aim of being active in every county by 2024.
Super 1s, a national Lord’s Taverners programme delivered in conjunction with county cricket boards, gives young people living with a disability the chance to play regular, competitive cricket and giving participants the chance to interact with their peers and enjoy the benefits of playing sport.
But the programme is more than just about playing cricket, it improves physical and mental well-being, gives a sense of belonging and allows participants to make friends and gain skills for life such as confidence and independence.
The partnership will also fund the further development of table cricket which is currently played in 357 schools by over 8,800 young people across the country. The game allows young people with more limiting disabilities the opportunity to engage in cricket, as well as develop a network of young leaders and schools who engage.
Table cricket is an adapted version of cricket played on a table tennis table. Alongside the enjoyment of playing the game and competing, table cricket develops teamwork and social skills among players, while helping with coordination and cognitive skills.
UK’s first digital hub for blind people featuring news, podcasts and the latest bestseller books now available on Alexa
A press release:
From today, blind and visually impaired people across the UK can access the RealSAM Smart Speaker (www.realsam.co.uk) via their Amazon Alexa device. With over 360,000 registered blind adults and children in the UK, the RealSAM digital hub provides visually impaired people with unparalleled access to information and entertainment – supporting their independence and everyday enjoyment.
RealSAM subscribers will benefit from an AI assistant, that guides people through its mass library of content in a way that surpasses the device itself. Subscribers will gain access to the dedicated hub for blind and visually impaired people, providing them with over 27,000 books, newspapers, podcasts, radio stations and content from Calibre Audio – a national charity that lends audiobooks to anyone who is print disabled.
Having launched last month on Google, this technology has received overwhelmingly positive feedback from within the disability community, including those who are unable to lift a book with conditions such as Muscular Dystrophy or being limbless. Furthermore, parents of disabled children have used the wide range of resources in an educational manner in a time of disruption.
Chloe Tear, a disability writer in the UK commented “It’s a great lifeline, especially when adjusting to assistive technology or wanting to get the latest information from sight loss charities. I love the navigation on RealSAM.
“Another great feature is the ability to give more than one command at once. Previously on smart speakers, you would have to ask one thing at a time. I believe this feature will allow visually impaired people to access information at a quicker speed. Not only is this great in general, it puts us more on par with reading speed. Therefore, if audio is your preferred method of accessing things, you’re on to a winner with RealSAM.”
The RealSAM Smart Speaker is clearly valued by such customers and this has culminated in winning at the Digital Book World Awards for Storytelling AI Developer of the Year by Project Voice. Having been recognised for being best best-in-class achievement from across the voice technology and conversational AI landscape, as well as beating the Amazon Alexa, puts RealSAM in a prime position to continue to deliver outstanding work within the remit of accessible technology.
The hub of content is accessed through a fully voice-controlled media skill that once subscribed to, utilises the latest AI technology to improve the independence of those living with visual impairments and sight loss. Activated in exactly the same way as all Alexa ‘skills’, the new platform subscription is available for £19.90 for 12 months’ access for new customers. This price reflects the constant innovation behind the technology as new content and partnership material are continuously being added to further enhance the user experience yet for now the price remains the same.
Sample phrases include:
‘Alexa, open RealSAM. Alexa, find books with title Little Women’.
‘Alexa, open RealSAM. Alexa list podcasts. Alexa, play TED Talks’.
‘Alexa, open RealSAM. Alexa, tell me about Henshaws’.
For more information, please visit www.realsam.co.uk
With many thanks to Benefits And Work.
Some PIP claimants are being left with no payments because their fixed-term award has come to an end before the DWP has made a decision about a new award, a government minister has admitted.
Justin Tomlinson, minister for disabled people, told MPs in a written answer that: “some claimants on fixed term awards without a review date are now falling out of payment before we have been able to make a decision on renewal claims they have made. We are prioritising these cases to ensure we can make a decision as quickly as possible.”
The minister did not give any indication of how many claimants are affected or how soon ‘as quickly as possible’ is likely to be.
You can read the minister’s full answer here.
A press release:
Usability testing by older and disabled people highlights that the majority of apps tested could do more to enable customisation which supports customers with visual or cognitive impairments.
RiDC (The Research Institute for Disabled Consumers), with funding from the Energy Industry Voluntary Redress Scheme has published a consumer guide into the ease-of-use and money-saving features of six popular heating control apps: Hive app, Honeywell home app, Honeywell Total Connect Comfort app, Netamo’s energy app, Nest app and Tado app.
The research included usability testing by ten disabled and older members of RiDC’s consumer panel who were already smart home central heating app users. A concurrent online survey with 633 respondents, also showed that one in four disabled people have difficulties using apps in general, with almost half of these (44%) going on to uninstall or stop using the app because of this.
During the usability testing, each smart home heating control app was tested for accessibility characteristics such as ease of download, ability to customise and responsivity. The team also looked at the app’s ability to save the user energy and money, with features like open-window detection and program modes.
The guide gives an overall rating for accessibility and potential to save energy. It also recommendations of who the app might work well for, according to their disability or specific needs.
The overall accessibility ratings are:
- Hive app (4.4/5)
- Nest app (3.7/5)
- Honeywell home app (3.4/5)
- Netamo’s energy app (3.4/5)
- Honeywell Total Connect Comfort app (3.3/5)
- Tado app (3.1/5)
Gordon Mccullough, CEO at RiDC says:
“Smart-home technology is often championed as a way for disabled and older people to have greater independence at home, which is particularly true for the control of heating and energy use. What’s interesting here is the variation in how much the apps can be customised, which unfortunately means that customers may miss out on being able to use some of the features, including those that have the potential to save energy and money.”
“Inevitably, customers will choose the product which best meets their needs, so we’d love to see other apps exploring how they can make sure their design caters for the different ways that their customers need to use it. Especially this year, where disabled and older people in the UK have been staying at home out of necessity.”
There are 14 million disabled people in the UK, and an aging population means that an increased number of people are likely to become disabled in some way. Some physical conditions and old age make it harder for the body to control body temperature and stay warm when needed.
Dr Wesley Scott, a participant in the user-testing has cerebral palsy and learning disabilities including dyslexia – therefore writing, counting and learning new concepts may prove difficult. He also experiences stress and anxiety. Being at home a lot and having to use more energy, he needs to keep track of how much it’s costing him to heat his flat. A confident smartphone user, his choice of energy provider depends a lot on the usability of their app. Here he shares his experience:
‘I would like it if (when filling in forms) I could speak my email address into it and other details. (Filling it in manually) is tricky because sometimes my hands get spasms and I end up pressing letters or words I don’t want to.’
‘Too many colours make it confusing for me… and the contrast between the background and the writing isn’t very clear.’
Linda has severe arthritis and asthma which means she means she needs more energy to keep her warm. She has dexterity issues with her hands due to the arthritis, wears glasses and is dyslexic. She says:
“I think if you’re young and your brain is very active, you pick up things a lot easier. I can do it eventually but I do have to sit down and think what bit do I need to go to next because it doesn’t actually say ‘Now go to..’ If you change the room temperature for instance, if you’re not careful you’ll change the whole house temperature so it all gets quite complicated.”
“Even now I have to stop and think – how do I change the temperature?”
Users also made suggestions on how the apps could improve accessibility and take up among disabled people.
Each app was user-tested by RiDC’s researchers and members of the consumer panel in November 2020. Individual scores of ease-of-use features represent an indicative interpretation by RiDC of the feedback received from members of the consumer panel rather than scoring by consumer panel members themselves.
Overall, the research found that the Hive app was the only one to perform well in all seven categories, its minimal user-interface and clearly displayed features making it easier to use for most impairment groups.
A full review of each app, along with ratings for each feature are now available to view on the RiDC website.
DWP Admits LEAP Letter Was Untrue
With many thanks to Benefits And Work.
Benefits and Work has been provided with a copy of a letter from the DWP in which a decision maker admits that a review of the claimants PIP award had not been carried out, even though he had received a letter stating that it had.
The claimant received a LEAP letter last year stating that their claim had been looked at again in line with the decisions in the MH and RJ cases and that they were not entitled to any payment of arrears.
The claimant challenged this arguing that they were covered by the MH decision.
The DWP decision maker responded in writing, saying that:
‘Your request for the decision not to be awarded the mobility component to be looked at again when considered in the light of RJ/MH will require a reconsideration which was not carried out for this aspect of your claim.’
The DWP eventually lapsed the appeal by making an award of £12,000 of backdated enhanced PIP mobility component payments.
As in other cases we have seen, this claimant was fortunate enough to have knowledgeable support with their claim. How many other claimants who are entitled to similar substantial sums are missing out because they do not have the same support to challenge false and misleading statements by the DWP?
Over 42,000 Carers Hit With Overpayment Bills
With many thanks to Benefits And Work.
42,400 carers are being forced to repay benefits overpayments, even though very often these were due to failings by the DWP.
Justin Tomlinson, minister for disabled people, told MPs in a written answer that:
“As of 13th April 2021, 42,400 people were repaying Carer’s Allowance overpayments.
“The total original value of those debts was just over £138million; the total amount currently outstanding is £89million.
“The Department has a duty to recover overpaid benefits as quickly and efficiently as possible, but it is not intended that the recovery of an overpayment should cause any customer undue financial hardship.”
However, the National Audit Office found in 2019 that due to high staff turnover, the DWP had 104,000 reports of changes of circumstances in November 2019 in relation to carer’s allowance which it had failed to process. This inevitably led to large overpayments being run up.
Those same claimants are now being penalised for something that was not their fault.
The eagerness of the DWP to recover overpayments of carer’s allowance contrasts with its reluctance to pay out to claimants owed arrears of PIP under the LEAP review.
You can read Tomlinson’s full answer here.
A taxi driver who refused to pick up an assistance dog and abandoned his passenger has had his licence revoked.
Shamal Hussein Majid told the customer the dog could go in his boot but there would be an extra £10 cleaning fee, Wolverhampton City Council said.
He also claimed he was allergic but did not have exemption paperwork and left the “vulnerable” customer, who is registered blind, at the roadside.
Mr Majid lost his appeal at Black Country Magistrates’ Court on Friday.
The council said Mr Majid, from St Andrew’s House in Wolverhampton, refused to carry the customer with a guide dog from Molineux Stadium on 7 March last year.
‘Inexcusable’
He ended up abandoning the customer and drove away in his private hire vehicle, the authority said.
Under the 2010 Equality Act, a driver will have committed an offence if they refuse to carry a disabled person’s dog and allow it to remain with that person. It is also an offence if they make any additional charge for letting the dog remain with the owner.
Chris Howell, the council’s commercial regulation manager, said: “Leaving a vulnerable person at the side of the road is inexcusable and certainly not the high standard that we expect from our licensed drivers who all undergo disability awareness training to ensure they are aware of their legal obligation to carry assistance dogs at no additional charge.
“Where a driver has a medical condition that would prevent them from carrying assistance dogs, this must be independently verified through medical testing and an exemption certificate is issued.”
Mr Majid was also ordered ordered to pay £300 towards the council’s legal costs.
