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Sound Of Metal: Will Gompertz Reviews Oscar-Nominated Film Starring Riz Ahmed

March 29, 2021

Ruben Stone (Riz Ahmed) is a drummer in a heavy rock combo. Lou (Olivia Cooke) is on vocals. They are partners on stage and off – soulmates in sound and recovery.

He is a heroin addict four years clean, she has a history of self-harm.

The band has a nihilist vibe as she screams and roars into a mic accompanied by feedback, dissonance and Ruben’s impassioned drumming.

He likes to play shirtless, showing off his heavily tattooed torso with the words Please Kill Me scrawled in capitals across his chest.

They seem pretty hardcore at first, but looks can be deceptive as it quickly becomes apparent they are deeply in love having found a semblance of peace in each other’s company.

They’re on a never-ending American tour, driving around in an RV that is so cool you immediately think of booking yourself a coast-to-coast driving holiday and then realise you can’t because of Covid, but then you have to dream.

They do. Of a new album, of a life together, of the open road.

And then…

Ruben loses his hearing.

The doctor doesn’t know why, could be the music, could be an autoimmune problem. Either way it isn’t coming back and Ruben can’t expose what little hearing he has left to any more rock ‘n’ roll.

Game over.

Story begins.

Riz Ahmed is exceptional as the thwarted, scared, jumpy Ruben. He plays the character like a champion jockey, one moment he’s reining in Ruben’s brooding temper just before he explodes, the next he’s giving him his head to make a connection with pupils attending a school for deaf children.

His nomination for an Oscar is well-deserved.

Olivia Cooke also turns in a solid performance as Lou, Lauren Ridloff steals the screen as a deaf schoolteacher, and Paul Raci – who is also nominated for an Oscar (supporting actor) – does a fine job as Joe, the shamanic elder statesman and Vietnam veteran running a rural retreat for people who are deaf and have addictions.

Sound of Metal was co-written and directed by Darius Marder, a relative newcomer with a promising future.

At no point does he let you forget this is a film about the sensation of sound, from the ever-present subtitles to the constant switching between audio POVs: complete silence, natural sound, distorted interference. It’s unusual and effective and, unsurprisingly, the sound team are also nominated for an Oscar.

 

It does have shortcomings, although at a gently paced two hours, duration isn’t one of them. The plot lacks subtlety and depth. Ruben is taken to the edge but never forced to look over the precipice – instead he is allowed to exist in a comfort zone without the opportunity to fully reveal his character. And the binary position he is put in – either accept and embrace your hearing loss, or try to fix it and push off – is a little simplistic.

But Ahmed’s performance rises above any patchiness in the script to make this one of the season’s must-see movies.

Sound of Metal is available on Amazon Prime Video from 12 April and released in cinemas from 17 May.

Coronavirus And Shielding: ‘I’ve Only Left My Home Five Times This Year’

March 29, 2021

Within the month of September 2019 Michaela Hollywood flew across America eight times, such were the demands of a leadership programme she was on. Since coronavirus, however, she has only been able to leave her home five times.

In early 2020 Michaela was scrolling through the news when she found an article about a “weird virus in China”. As someone with health difficulties, the 30-year-old immediately started making changes to her life.

“I tried to stop touching any surfaces outside my home,” she says. “If I’d waited until the extremely clinically vulnerable letter had come in, who knows what would have happened.”

Michaela, from Northern Ireland, has spinal muscular atrophy (SMA), a genetic and degenerative condition which weakens muscles and impacts movement. She is a full-time wheelchair-user, is unable to sit-up unaided and her breathing muscles are paralysed.

Michaela went about life cautiously but continued with cinema trips and bingo with her mum – until her final night of freedom, although she didn’t know that when she went out.

“It was big money night at bingo,” she says. “My phone started flashing to say that we had community transmission in Northern Ireland, and I knew that would be it. I decided to shield.”

 

It was 12 March 2020 – one day after the World Health Organization declared Covid-19 a global pandemic.

At this point there was no guidance offered in the UK. Friends who had previously been part of Michaela’s medical team suggested she take “every precaution”.

She went from jet setting across America for her work in disability rights, to trying to settle into life at home under lockdown just six months later.

She lives with her parents, while her sisters, brother-in-law, nieces and nephews live in the next house along. “I still had family around me, so I know I’m really privileged,” she says.

But the initial weeks and months of lockdown were taken up with solving problems.

Michaela uses personal assistants to help with everyday tasks like washing and eating, but that became problematic when protective clothing, known as PPE, ran out because of high demand.

There was one way around it.

“Two of them moved in,” she says. “We have a spare room, but it was full of junk. So we had a day where we emptied the room. I’m really thankful to them for making it happen.”

While this newly-formed bubble solved one problem there were others.

Mastering the balance between having medication stocked at home and ordering new batches in time, while allowing for delays, was tricky. And food was a headache too. Michaela’s condition affects her ability to swallow and so while she can eat solid food, it needs to be soft.

For the first four months, securing online deliveries without food substituted for something she might not be able to eat was near-impossible and she relied on what she had stockpiled pre-lockdown.

“I lived on beans and soup,” she says. “Once I was able to get on to the register as a vulnerable person it wasn’t too bad.”

 

Then there was the mundanity of lockdown everyone has faced for a year too. But for Michaela there was no possibility of a walk outside or meeting a friend, socially distanced.

“I watched Star Wars for the first time, and I am still trying to watch every episode of The Simpsons. It’s all those little things that sound nothing but actually keep you busy.”

Although stuck inside, technology did open up the world for some disabled people.

“There was a sense of euphoria because all of a sudden there were events we could go to – there were concerts online, access to university,” Michaela says.

“I was looking at all these things and thinking how much better this is for our community.

“That’s not saying we would choose that every time, we wouldn’t, but we would certainly need it sometimes.”

It wasn’t being confined to the house which Michaela found most frustrating, but other people’s behaviour, including those who could but refused to wear masks.

“It’s not straightforward to shield when you’re also physically disabled,” she says. “I have to bring people in from the community into my house every day – I can’t stay in my room on my own.”

This was one reason why her PAs moved in, so she didn’t have to deal with a variety of agency staff.

Michaela also implemented her own rules – she wouldn’t step on ground beyond the house boundary until community transmissions stopped.

Come June, that possibility arrived when Northern Ireland recorded no new cases.

“I made the most of that,” she says.

‘Liquid gold’

Having got a new job to support disabled people with technology, Michaela hit the shops for new work clothes and managed to get a private cinema screening of Tenet, because no one else had booked.

She only had three other trips outdoors, all for medical appointments – X-rays, blood tests and her first Covid vaccination. It still felt like freedom.

“That was a period of grace for me and I still genuinely believe that it should have been two weeks for shielders to get out and have some respite,” she says.

Some European countries like Spain did implement a timetable to ensure everyone could enjoy time outside – something Michaela thinks the UK should think about next time.

Non-shielders were banned from going out during certain hours to allow those shielding or the over 70s to go out safely.

During the interview, Michaela’s phone rings and she says she has to take it, but wants to keep me on Zoom.

“You have just witnessed the greatest moment of my life,” she beams, looking slightly shocked as she ends the call.

“There’s a drug for my condition called Risdiplam that has just become available in Northern Ireland – I can only call it liquid gold.”

Risdiplam helps the body produce the protein that people with SMA are missing, which causes muscle weakness. It can halt the progression of SMA and may encourage improvements.

“For the first time ever, my speech should hopefully become clearer,” she says. “Wow – I might be able to lift my hand up to my mouth again.

“It’s turned the worst year of my life into one of the most changing.”

With Michaela’s first order arriving this week it brings hope that things are getting better.

In England and Wales 1 April signals the end of shielding. In Northern Ireland shielders are advised to continue taking extra precautions until further notice.

“I would need to know that community transmission has all but stopped before things change for me,” Michaela says.

But that doesn’t stop her dreaming about that day.

“There is an ice cream parlour, not far from here. It’s by the seaside and they do the most incredible ice cream.”

Man City & Liverpool To Participate In Mouthguard Study

March 26, 2021

Liverpool and Manchester City women’s and youth teams are set to use special mouthguards in training to assess the impact of heading the ball.

Already used in rugby, the mouthguards are able to collect data in real time and show how impacts affect the brain.

It will form part of a Premier League research project after concerns about the long-term dangers of heading.

In 2019, a study found professional footballers more likely to suffer from neurodegenerative brain disease.

The Premier League wants the research to be completed in months after accusations that football has been slow to act.

However, concussion substitutes and restrictions on heading in youth football have already been introduced this season.

On Tuesday, the Football Association’s chief medical officer Charlotte Cowie said football was “moving towards” changes to heading in professional training.

She said that the governing body’s research taskforce had recommended that youth team players “would only head the ball a maximum of 10 times in a training session, once a week”.

She added that similar changes to the professional game were “contingent” on how effective youth heading guidelines are with coaches and the success of the Premier League research.

Cowie explains that the “integrated mouthguards” would help “understand types of header” where forces might be different depending on how far the ball had travelled before impact.

“We want some more detail on that before we rule on the professional game, but we fully intend to do that and also in the adults grassroots game,” she added.

Man With Speech Aid Thanks Yorkshire Voice Donor Volunteers

March 26, 2021

A man whose speech aid makes him sound “American” has thanked voice donors after an appeal to help him speak in his native Yorkshire accent.

Richie Cottingham, from East Yorkshire, who has cerebral palsy, wanted to create a new voice so he could “sound like my family and friends”.

More than 35 people responded to the plea and three local men have now been chosen for their voices to be recorded.

“Once I have a new unique voice, I have an identity,” said Mr Cottingham.

“I would like to say thank you to all the volunteers who took the time and effort to apply,” said the 26-year-old, who lives near Howden.

Jennifer Benson, Mr Cottingham’s speech and language therapist, said: “We’ve been absolutely blown away by the response from people who’ve offered to donate their voice and sent in their videos for us to listen to.”

She said they were both “amazed” by the amount of support they had received as a result of the appeal.

“He’s over the moon with everything that’s happened.”

Of the 36 volunteers, 27 potential donors submitted voice recordings.

One volunteer, George Burns, said he felt obliged to offer his voice because “it’s something we all take for granted”.

Another would-be donor, Ryan McPherson, 29, said: “Covid’s taught me that, really, we need to try and do everything we can to help anybody.

“If it’s the littlest thing that might make that person’s life a little bit better, than I’m more than happy to help out where I can.”

image captionRyan McPherson is among 36 people who offered to be a voice donor

Mr Cottingham had hoped to select two local men, but instead has shortlisted three because they “all appealed to him”.

His new voice is being created by blending recordings of the shortlisted men.

Once created, it will then be installed on Mr Cottingham’s communication aid.

“I would like to say how good the experience has made me feel,” he added.

Concussion In Sport: Gordon Taylor Responds To Chris Sutton’s Dementia Criticism

March 25, 2021

Professional Footballers’ Association chief executive Gordon Taylor says his organisation has done “more than any other players’ union, sporting union or trade union” on the issue of dementia in football.

His comments came after former England striker Chris Sutton told a parliamentary hearing on Tuesday that Taylor had “blood on his hands” for ignoring the issue.

Sutton, whose father Mike – also a former footballer – died last year after suffering with dementia, said the PFA and Football Association had “not done enough” and called for the government to take control.

“They have ignored, they have shunned, they have turned their back on what has been a massive issue,” Sutton said.

“Hundreds of players have died – my father included. This is something we need to deal with, and deal with fast.

“It’s really important the government take ownership of this, because the FA and the PFA haven’t done anywhere near enough.”

The session also heard criticisms of football’s approach to brain injuries from campaigner Dawn Astle, whose father, former West Brom striker Jeff, was ruled to have died of a brain condition normally found in boxers.

In a statement to the BBC, Taylor, who is leaving his role at the end of the season, said support was offered to Sutton, and he was invited to the PFA to see their work on concussion and the “possible short- and long-term consequences of repetitive heading”.

Taylor added: “The invitation was never taken up but nevertheless, I believe we have done more than any other players’ union, sporting union or trade union on this issue when this is also a worldwide problem for governments and all populations, health services and neurologists alike.”

FA fails to state injury research figure

The FA’s failure to reveal during the hearing how much it spends on head-injury research left MPs “lost for words”.

During a Department of Culture, Media and Sport session into head injuries in sport, the FA’s chief medic Charlotte Cowie said she did not know the figure.

DCMS chair Julian Knight criticised Cowie’s failure to provide a figure.

“I am absolutely appalled. I think you’re too embarrassed,” Knight said.

In responding to questions about the level of FA funding into head injury research, Cowie said there was “no funding limit but we want it to be the best in answer to our research questions”.

Knight responded by saying: “I am staggered and I think this committee is staggered you have not come here today furnished with the information in terms of how much money you are spending on research in the last year.”

Conservative MP Heather Wheeler told Cowie: “I don’t know if I could do your job, love. I’m lost for words.”

Later in the session, the chief executive of the Rugby Football Union Bill Sweeney said that his organisation spent £350,000 on injuries, of which head injuries were a large part, and committed “millions” of pounds to ongoing research.https://emp.bbc.co.uk/emp/SMPj/2.39.19/iframe.htmlI can’t remember England games at World Cup, says 2003 winner Thompson

By comparison, the FA commits a six-figure sum, but finances are understood to be only one element to getting other research off the ground. Cowie said involving the right participants was one issue it had to contend with.

In response to criticism from Astle and Sutton, Cowie stated that the FA had contributed to the 2019 Field (Football’s Influence on Lifelong Health and Dementia Risk) study into neurodegenerative brain diseases.

That research found that former footballers were between two and five times more likely than the general population to die from degenerative brain diseases.

The governing body has proposed further research into the cause of increased risk of brain injuries in footballers and has ensured heading is reduced in training for under-18s. Players in those age ranges will head the ball a maximum 10 times in training during a single week.

Cowie told the committee: “They really are the most stringent heading guidelines that exist in a football governing body in the world at the moment and we are moving to heading guidelines in the professional game.”

She said introducing similar measures into professional football would depend on the results of a survey looking at the effectiveness of the youth football guidelines. Further work, she said, will also involve using specialist mouthguards that can help to measure the force and impact of different types of headers.

Cowie was also questioned on why football had chosen permanent substitutions over temporary ones used in rugby, saying: “The overwhelming view of the doctors who worked in football was this would work best as our model.”

But Sutton said the new substitutions laws “don’t have the players’ welfare and health at heart”.

He also estimated he had headed the ball 72,000 times in his career and called for clubs to limit heading in training to a maximum of 20 per session and allow a minimum of 48 hours between those sessions.

Covid-19: 700 Special School Staff Given Priority For Vaccine

March 25, 2021

About 700 staff in special schools have been given priority for vaccination against Covid-19.

That is according to the Department of Education (DE).

Officials from the department told MLAs on Stormont’s Education Committee that it represented about 25% of staff in special schools.

Committee Chair Chris Lyttle said many staff had been “failed and let down” by being excluded from the vaccination programme.

The Education Minister Peter Weir also told MLAs that schools were, “largely speaking”, “a very safe place” against transmission of Covid-19.

Primary children in P4 to P7 and post-primary pupils in years 12 to 14 resumed face-to-face teaching on Monday 22 March.

Pupils in years P1 to P3, nursery and pre-school children, had already returned on 8 March for the first time since before Christmas.

Mr Lyttle asked Mr Weir what scientific and medical evidence had informed the return of schools.

“The position I suppose in terms of the medical and scientific advice has been that largely speaking, schools themselves – particularly with the mitigations – are a very safe place,” Mr Weir replied.

“The concern was always around what the broader behavioural impact of a return to schools or indeed where schools were sitting and what impact that would have on the R rate.

“Any form of relaxation that the executive makes in any direction will have some level of impact.”

Mr Weir said that the extent of Northern Ireland’s vaccination programme and its impact was important as children and young people were “least at risk” of becoming seriously ill from Covid.

“The R rate itself is only really a measure, largely speaking to actually what really matters which is what are the level of hospitalisations? What are the level of deaths?” he said.

The minister also said that the Education Authority (EA) had received an initial supply of about 700,000 lateral flow device (LFD) tests for use in schools.

All school staff and senior pupils in years 12 to 14 are being encouraged to take LFD tests twice a week.

The committee’s vice-chair, Sinn Féin MLA Pat Sheehan, however, asked what contingency plans were in place for schools if infections rose again.

Mr Weir said the executive had taken a more “cautious approach” on the return to pupils in primary schools than England, Scotland, Wales and the Republic of Ireland – but he admitted that some schools would face disruption.

“Will this be 100% for everybody all the time? No, I don’t think that’s likely to be the case,” he said.

Health-led process

The executive had also previously agreed to prioritise some special school staff for vaccination.

However only a limited number of staff directly caring for clinically vulnerable children were given priority.

A departmental official, Ricky Irwin, told the committee that 700 special school staff had been identified as a result of what he said was a “health-led” process.

“It is probably about a quarter of teaching and non-teaching staff, which is around 2,600,” Mr Irwin said.

“We were relying on the trusts and the consultant paediatricians to identify the lists of clinically extremely vulnerable children and then the schools identify the groups of staff that support those children.”

Mr Weir said the executive consensus was that the vaccine roll out should be led by age rather than profession, but admitted it was “not probably” the ideal situation.

“Our ideal situation was that all special school staff would have been vaccinated,” he said.

Mr Weir also said that around 300 schools had initially expressed an interest in running summer schemes or schools for some pupils in 2021.

Family Facing Deportation From Australia Because Of Son’s CP

March 24, 2021

I can’t describe how sad and angry I am after reading this. I have Cerebral Palsy and am a British Asian. I have grown up in the UK. I can’t imagine anything like this happening here. The fact that this child was actually born in Australia just makes the situation 1000 times worse in my eyes.

 

Australia’s disability discrimination commissioner has called on the immigration minister, Alex Hawke, to intervene “in a humane way” in a case in which a family is facing deportation because their six-year-old son has a disability.

On Tuesday night Ben Gauntlett was quizzed at Senate estimates about the plight of Australian-born Kayaan Katyal, and his parents, Varun and Priyanka, who are facing deportation after being rejected for permanent residency last month.

The ABC, which revealed the case on Sunday, reported that the family had been told in a rejection letter that Kayaan would cost taxpayers $1.23m over 10 years, which “would be likely to result in a significant, undue cost to the Australian community in the areas of health care and/or community services”.

Varun moved to Australia from India 12 years ago and Priyanka has lived in the country for eight years, while Kayaan, who lives with cerebral palsy, was born in Australia.Two men killed in floods; state MP stands by statement on federal senator – as it happenedRead more

Gauntlett noted under questioning from the Greens senator Jordon Steele-John that he did not have the power to waive visa conditions, but said he was willing to advocate on the family’s behalf.

He said the immigration minister had the power to intervene in visa cases and was hopeful “the minister would exercise their discretion in a humane way in this instance”.

He said he also hoped the minister understood that Kayaan “has a lot to give to the society in which he lives, and his family does as well”.Advertisementhttps://f14a75f10793289bc9c83f4d86004755.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

“I would hope the minister would understand the importance of exercising their discretion or waiving visa conditions in this instance,” Gauntlett said.

Under a controversial section of Australia’s Migration Act, permanent visa applicants must meet a health requirement by demonstrating they are “free from any disease or condition” that would be a “significant healthcare and community service cost to the Australian community”.

The Department of Home Affairs has repeatedly insisted the law is not discriminatory and noted that people with disability are not automatically rejected.

But Gauntlett told Senate estimates there were questions about whether the law breached the UN convention on the rights of persons with disabilities.

“We would argue that there is a very viable argument that this is actually contrary to article 18 of the convention,” he said.

Australia’s health requirement was criticised by the UN in 2019 and has since been the subject of a campaign, Welcoming Disability, to overturn the law.

Gauntlett noted that Canada had changed a similar law, which the Trudeau government said in 2018 was “out of step with a “21st century approach to persons with disabilities”.

Steele-John, who also has cerebral palsy, said it was wrong to view people with disabilities as a cost to health system. He said a parliamentary inquiry had recommended a change to the law in 2010.

“This is not new conversation,” he said. “It concerns me greatly that a child with cerebral palsy is facing deportation simply because of their disability in a context where the NDIS system now recognises that disability is not a drain on the health system.

“In fact, it’s something that can people can receive support for so they can in fact contribute to society.”

The immigration minister was approached for comment.

Liverpool’s Vaccine Clinic For People With LD

March 24, 2021

When the radio presenter Jo Whiley spoke last month about the absurdity of being offered a Covid vaccine before her sister, who has diabetes and learning difficulties, the ensuing outcry prompted a change in government policy.

Within a fortnight, during which Whiley’s sister, Frances, was hospitalised for Covid, the government announced that all individuals on the learning disabilities register would be prioritised for a coronavirus vaccine.

But in Liverpool, learning disabled (LD) patients have been offered the chance to attend special clinics since before the government U-turn. The Central Liverpool GP Network, which has 106,000 patients across the city, invited the Guardian to attend one to see what adaptations are needed for this vulnerable group in society.Advertisementhttps://3f161ea1b4c302af1aa15c265f1a6394.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

The first, most obvious difference is how quiet the surgery is at Princes Park medical centre. Most coronavirus vaccine clinics tend to be noisy places, with marshals corralling people into the right queue, and the excited buzz of patients.

One mass site in Newcastle can rattle through 30 people every five minutes, but the Liverpool GPs have allocated 45 minutes per LD patient, which includes an annual health check. One patient is Gary Mason, who lives alone in sheltered accommodation.

“I just want to get the bloody thing done,” says the 59-year-old, who has turned up with a handwritten note given to him the previous day by his GP, telling him where and when to come for his jab.

He is ushered into a private room where Ioan Wardhaugh, a student doctor, slowly talks him through the vaccination process. Mason has already rolled up his sleeve, ready for another student doctor, Portia Amoako-Tawiah, to administer the dose. He giggles as she plunges the needle in, and insists afterwards he hasn’t felt a thing.

Not all LD people fully understand the risk of Covid, says Hilary Harper, a health facilitator for learning disabled patients in Merseyside: “There’s plenty of people who really don’t understand the need for isolation. There’s people who should be shielding, but because they live alone they’ve got no one to tell them.”

One of her regular patients was recently hospitalised for Covid and discharged himself home with tubes still attached after misunderstanding something a nurse had told him. “The nurse came around to see him and said ‘you’re doing really well, you should be going home soon.’ He literally got up and walked out because he interpreted what she said literally,” she said.

Other patients have worried incessantly, like Natalie Davies, 31, who has come for the jab with her mum, Josephine. She has autism and has been obsessed with Covid statistics, says Josephine. “I had to keep telling her to get off her phone and stop looking at the numbers. I’m really glad she’s had the vaccine now.”

For people with severe learning difficulties who do not have the mental capacity to consent, the decision on whether to give the vaccine can be more complex. On Friday a judge ruled that a man in this situation should have the jab despite his family’s objections.

The judge, based in Manchester, considered the case at a hearing in the court of protection. NHS Tameside and Glossop clinical commissioning group has responsibilities for the man’s treatment and had asked the judge to rule that vaccination was in his best interests as he was “clinically vulnerable”. However, the man’s father argued the vaccine had not been tested sufficiently, said it did not stop people contracting Covid and said the long-term side-effects on people with severe health issues were unknown.

The judge said the man’s father had outlined his concerns, which he said were founded on love, with “conviction and great clarity”, but he decided the family’s objections had “no clinical evidence base”. The health authority said the vaccine would not be administered if any form of physical intervention was required.

Sinead Heneghan, a GP and the Liverpool network’s LD champion, can’t understand why the government didn’t prioritise LD patients sooner. “We know that people with a learning disability have been disproportionately affected by Covid. They’re six times more likely to die from Covid, and those aged between 18 and 34 are 30 times more likely to die,” she says.

Many patients’ health has drastically deteriorated during lockdown. “The last clinic we did, we picked up so many health problems that wouldn’t have been identified if it wasn’t for us doing these health checks. Mental health was the big one. But we also picked up people who were having bleeding from the bottom or blood in the urine, or really bad chest issues,” says Heneghan.

“People with learning disability die decades earlier than the general population,” says Harper. “Red flags can can be missed with people who have learning disabilities, and those contribute towards early death.”

The government pays GPs £12.58 a jab, making small LD clinics such as Princes Park uneconomical. But Beth Lynch, a GP who is in charge of the Central Liverpool network vaccine rollout, says vaccinating this vulnerable cohort is not a burden.

“Investing in thorough, proactive care with this population, both in terms of Covid vaccination and top-to-toe health checks, proves vital in ensuring their health needs are met, both physically and holistically,” she says. “This prevents long, traumatic hospital admissions, which are so upsetting for our LD patients and their carers. Deciding whether to invest in equitable, proactive healthcare or traumatic unplanned hospital care is a complete no-brainer, and these patients deserve nothing but the former.”

Latest PIP Statistics, The Good And The Bad

March 24, 2021

With many thanks to Benefits And Work.

 

The chances of a successful new PIP claim fallen, but the success rate for mandatory reconsiderations is rising and the DWP are now more likely to give you a better award before your appeal hearing gets heard.

We’ve collected together some of the most important figures from the latest set of DWP PIP statistics and set them out below.

But for an even more condensed view, here are what we consider the stand-out stats:

  • Just 42% of new PIP claims are successful.
  • 33% of all PIP awards are at the highest rate for both components.
  • For new claims, in January 2021, 77% were for 2 years or less.
  • On review, 38% of all claims are reduced or stopped, just 18% are increased.
  • The success rate for mandatory reconsiderations was 33% for decisions made in the quarter July to September 2020.
  • The DWP increased the awards to 29% of PIP claimants who appealed, after mandatory reconsideration but before their case went to a hearing, in the 2019 to 2020 financial year.

Claim success rate 

From April 2013 to January 2021:

5.7 million claims to PIP were registered.

5.4 million claims have been cleared, with:

  • 42% of normal rules new claims,
  • 71% of normal rules DLA reassessment claims,
  • 99% of special rules terminal illness claims

receiving an award.

These figures include claimants who are disallowed prior to assessment or who fail to attend their assessment.

Award rates

One third (33%) received the highest level of awards (‘enhanced/enhanced’ rates) for both mobility and daily living components, and almost a further third (29%) received one component at the enhanced rate.

Almost one quarter (24%) received daily living award only, a few (4%) received mobility award only, and nearly three quarters (72%) received both.

Length of award

For new claims:

in January 2021, nearly three quarters (77%) of claims awarded were short term (0 to 2 years), less than one in ten (6%) were longer term (over 2 years) and less than one in ten (7%) were ongoing

For DLA reassessment claims:

in January 2021, short term 0 to 2 year awards were the most common award type (nearly half – 47% – of all claims awarded) followed by longer term claims over 2 years (30%) and ongoing awards (21%)

Review outcomes

For planned reviews of PIP awards

  • Award increased 18%
  • Award stays the same 44%
  • Award reduced 14%
  • Award withdrawn 24%

Claimants with psychiatric disorders are most likely to have their award decreased or disallowed (43%)

Mandatory reconsiderations

The DWP say that:

A new operational approach was introduced in 2019 when the Department began proactively contacting claimants, as appropriate, to collect further oral or written evidence at the MR stage. This saw a gradual increase in the proportion of awards changed since January 2019 (23%) to 40% in December 2019.

COVID-19 also had an impact on the proportion of awards changed with a sharp increase between 44% in March 2020 and 57% in April 2020

Claimants who were disallowed at initial decision were more likely to go on to register an MR (48% of decisions to disallow) or lodge an appeal (42% of MRs completed) than those who were awarded PIP (11% of decisions to award PIP and 34% of MRs completed)

Claimants who were disallowed at initial decision were less likely to have an award changed at MR (15%) or appeal (65% overturned) than those who were awarded PIP (27% of awards changed at MR and 74% of appeals overturned)

MRs resulting in a change to the award has remained at a similar level (33%) in the most recent quarter of initial decision (July to September 2020) to the previous quarter, and is 7 percentage points higher than the same quarter the previous year, reflecting a levelling off of the increase since 2017 to 2018

Appeals lapsed

A lapsed appeal is one where the DWP changes their decision to give the claimant a better award after the claimant has lodged an appeal.

Appeals lodged which were lapsed gradually increased from 2015 to 2016 to reach 29% in the 2019 to 2020 financial year.

From claim to appeal

For initial PIP decisions following an assessment during the period April 2013 to September 2020:

nearly one in five (19%) of completed MRs resulted in a change to the award (excluding withdrawn)

two in five (40%) of completed MRs then lodged an appeal

just over one in ten (13%) of appeals lodged were “lapsed” 

two thirds (67%) of the DWP decisions cleared at a tribunal hearing were “overturned” (which is where the decision is revised in favour of the claimant)

just under one in ten (9%) of all initial decisions following a PIP assessment have been appealed and around one in twenty (5%) have been overturned at a tribunal hearing

You can read the complete set of DWP statistics here.

Covid: Blind Woman Forces Government Action In Shielding Case

March 23, 2021

A blind woman who was sent a shielding letter she could not read has won “promising” commitments from the government after a legal challenge.

Sarah Leadbetter, from Narborough in Leicestershire, is classed as clinically extremely vulnerable.

However government correspondence advising her to shield was not sent in a format she could access – which she argued was discrimination.

The government agreed to review its communication with disabled people.

‘Promising step’

Ms Leadbetter, 45, who is registered blind, said she was “very proud” of the results of her legal challenge.

“This is a promising step,” she said.

“It shows we are being listened to. Everyone should get important documents sent to them in the format they ask for.”

She said she had repeatedly asked for information about her health to be emailed to her as she cannot use Braille and instead has technology that will read out electronic messages.

But she said this has always been denied and so when the shielding letter came through, her mother had to read it to her.

She added she is part of a social group of 19 people with the same condition as her, Bardet Biedl Syndrome, and only two had received the shielding information in a way they could access.

She said it made her feel less independent, denied her privacy and would not be an option for everyone.

The Royal National Institute of Blind People said they “regularly” heard of such cases and had been raising their concerns with the government “since the start of the pandemic”.

Ms Leadbetter and her lawyers, Leigh Day, argued her human rights and government standards had been breached and were granted a judicial review in the High Court.

They were supported by the Equality and Human Rights Commission (EHRC).

Before it could get to court, the Department of Health and Social Care (DHSC) made a number of agreements.

These included reconsidering how it communicates with people who are shielding, investigating how it can keep a better record of preferences and bringing in any changes within four months.

A DHSC spokesperson said shielding letters were available in a variety of formats to make them accessible, and are sent electronically when someone has an email registered with their GP.

They added: “The government has supported disabled people throughout this pandemic and we continue to assess what further support can be offered, including options for providing accessible shielding information to patients directly.”

How PIP Aids And Appliances Are Used Against You And How To Fight Back

March 23, 2021

With many thanks to Benefits And Work.

 

The DWP have been waging a covert war against PIP claimants almost since the benefit was introduced, reducing the percentage of successful claims year after year. Our survey on aids and appliances shows that unfairly applying these rules is one of the ways they cut claimants’ points, whether you use aids or not. We are now arming members with more ways to fight back.

The war on points

There can be little doubt that the DWP are working quietly, behind the scenes, to find ways to reduce the number of successful claims.

Award rates for new claims have fallen relentlessly from almost 70% in 2014 down to 48% in the last six months.

Award rates for DLA to PIP reassessments have also fallen, from over 80% in 2014 to 61% in the last six months.

Yet the law in relation to PIP has not changed in ways that would explain this steady fall. If anything, successful court decisions in cases like MH and RJ should have led to an increase in the award rates.

We believe that the DWP is continually looking for ways to interpret the rules more restrictively, without openly changing them, in order to stop claimants qualifying.

And one important way that PIP points can be cut is by unfairly applying the aids and appliances rules.

Over 400 readers completed our survey on aids and appliances. We’ve used the information you gave us to help update and expand our PIP claims and reviews guide, with detailed advice on how to avoid losing points.

Your replies suggest that misusing the aids and appliances rules is now commonplace and it isn’t just happening on initial claims. We heard from claimants who have lost existing points when their award was reviewed because aids have now been suggested, when previously they weren’t.

The latest PIP figures show that whilst 18% of claimants have their award increased as the result of a planned review, 14% have it reduced and almost a quarter – 24% – lose it altogether.

Scoring points for aids and appliances

As most readers will know, you can score 2 points for many PIP activities if you need to use aids or appliances to carry them out. Aids can be anything from tipping kettles and sock-sliders to grab rails and shower stools.

Aids are a vital part of many claimants lives. We were introduced to some extremely inventive DIY aids by readers who completed our survey.

“Perfume to identify the colouring of the clothes on my hangers.”

“2 nappy pins and 2 pieces of string attached to the nappy pins. I attach each pin either side of my underpants waistband, trousers or pyjamas. Put the item of clothing on the floor, push in my feet and pull up the clothing using the string.”

Readers also told us about aids that we had never come across before, such as Microsoft Soundscape for visually impaired and blind people which gives lots of information about the area you are walking through and warns you of junctions and other hazards.

Or the Brain in Hand support system, which is particularly aimed at people with ASD, learning difficulties or anxiety. It is both an app and a link to a support system provided by real people.

But you also told us about your experience of the ways that the DWP use aids and appliances rules to reduce your points.

You don’t really need aids and appliances

Where you say you use aids, the DWP will often argue that you don’t really need them, you just prefer to use them and therefore you are not eligible for points for them.

They inferred that I did not need aids as I bought them myself.

Or they will argue that the items are not classed as aids.

DWP argued that even though I have Apps for my condition and anxiety that I cannot list them as an aid.

Or they will say that because you manage other activities that, in reality are not even remotely connected, you can manage the activity in question.

Their favourite task in this regard is driving a car, as these members discovered.

“[The DWP said] if I can drive then I have strong arms wrists and grip therefore I was fully capable of using kitchen aids and cooking a full meal.”

“DWP have stated on my recent review that because I can still drive I can use aids such as a back brush for washing; in fact they state it numerous times in the review. I shall be contacting them to point out that the movements and skills needed are not the same. Because I can still drive does not mean that I can manipulate a back brush or clean myself after using the loo!”

You only really need aids and appliances

The other side of the same coin is when you say that you are unable to carry out an activity or can only do so with help from another person.

Here, the DWP may argue that you only need to use an aid, which scores fewer points, rather than needing help.

Sometimes, an assessor will not even take the trouble to specify which aids should be used:

“In the assessment they just said I could use aids to help with cooking”

Tribunals, however, cannot do this following an upper tribunal decision – they must say which aids they have in mind.

More usually the assessor will specify which aids you could use, but often without checking with you whether you have ever tried using such an aid or what difficulties you might have with it.

The Assessment stated several instances where I needed aids and appliances rather than help. They did not take account of my misshapen painful fingers or lack of movement in arms when stating this. Also my ability to used aids and appliances for toilet needs because of pain and lack of movement.

In our survey, aids you told us that assessors used in order to refuse points for help, included:

A walk in shower with a seat – great if they’re going to pay for my bathroom to be converted. (Even though the legal test is your ability to get in and out of an unadapted bath or shower).

Potato peeler. I can’t as the grip gives me cramp with the repeated movement. It would take me hours!

A walking stick but I have both rheumatoid and osteoarthritis in my hands which makes using a walking stick more painful than walking without one

They said a perch stool to help me in kitchen without realising I said sitting hurts really bad.

Sadly, it’s not just the DWP that uses aids to reduce points. Even some tribunal judges will do it:

The judge in the appeal panel suggested an appliance that I put my vegetables in and press it down, it would chop up carrots etc. I have bad hands, carpel tunnel and arthritis. Together with nerve pain from shoulders and find it hard to grip anything. I had to say yes I would use the suggested aid, but it did not work for me.

This experience alone shows the importance of preparing in advance for the suggestion that you could use common aids.

Updated guide

It’s really important that you are aware of these tactics and, where possible we would advise dealing with them before the DWP or a tribunal can even use them.

The Benefits and Work PIP guide has always included a page on aids and appliances.

And our six step system for giving detailed evidence has always reminded readers to list any aids you use, explain why you use them and also to say if you need help when using them.

But we are now also advising you to consider explaining any reasons why you don’t use common aids, so that you’ve dealt with the issue before it has even been raised. Most common aids are listed in the guide under each activity.

It doesn’t guarantee that the DWP won’t still try to deny you points, but it does ensure that you have given consistent evidence from the outset and considerably improves your chances of a successful outcome.

And, if the assessor suggests aids without dealing with your reasons, it’s strong evidence that they failed to read your PIP2 properly and undermines the credibility of their assessment.

We’ve also greatly increased the information about aids and appliances in our PIP claims guide, with a five page section devoted solely to the subject.

We set out the legal definition of aids and appliances and provide links to important case law on the subject.

We list nine different ways to challenge the claim that you could use an aid or appliance instead of getting help, with brief examples for each.

For example, an aid may only solve part of the problem:

  • Even if something like an auto chopper is used, vegetables still have to be peeled and cut to a size small enough to fit in the auto-chopper.
  • Even if you use a timer to remind you to put food on the hob, you may still walk away and forget that you are cooking.
  • Or you may need not just reminding but also encouraging to undertake the activity, so a timer would only solve half the problem.

We suggest that you deal with these issues in your PIP2 form and at your assessment, rather than having to challenge them only after they have been used by the DWP to remove points or when they are suggested by a tribunal judge.

We also look at the three main ways that the DWP try to avoid giving points where you do use aids and offer you ways to counter these arguments too.

And we’ve even added a page on driving a car, looking at how the DWP try to use your ability against you and advising how to deal with this in advance, using the additional information section as well as sections on individual activities.

All of this means spending even more time on the painful business of completing a PIP2 form and preparing for an assessment. But as success rates for new claims continue to fall, and over a third of review claims are reduced or stopped altogether, it is almost certainly time well spent.

Members can download the latest edition of the PIP claims and reviews guide from the links on this page.

Cladding Crisis: ‘I Feel Constantly Sick And Stressed’

March 22, 2021

Georgie Hulme inherited her third floor flat in Manchester from her mother, who thought she was providing her daughter with home security for life.

Since then, inspections of the building in the wake of the Grenfell Tower fire have exposed major fire safety problems, including dangerous cladding.

Ms Hulme, 42, who has disabilities and can’t work, now fears bankruptcy due to spiralling repair bills.

“I feel constantly sick and stressed. These buildings were built unsafe, so no leaseholders should pay for something that’s not their fault,” said Ms Hulme.

Thousands of disabled leaseholders, often on low incomes or benefits, warn they are financially and physically trapped by Britain’s cladding crisis.

Ms Hulme has Tourette’s Syndrome and uses a text to speech device to communicate.

Her block, part of the Life Buildings apartment scheme in south Manchester, is less than 18 metres tall, which means it isn’t eligible for the government’s £5.1bn Building Safety Fund for cladding repairs.

Ms Hulme could be forced to take out a long-term government backed loan, capped at £50 per month, to fix the faults.

“I’ve been unable to work for many years and am reliant on state benefits. It’s impossible for me to access the sums of money needed,” she said. “Each day I panic that a bill will arrive.”

The developers of the building have folded, leaving leaseholders with no recourse to challenge them, or compel them to contribute to the remediation work.

The managing agents of the Life Buildings, Scanlans, said leaseholders who bought properties in good faith with appropriate certification have been placed in an “impossible position”.

“We are pursuing all avenues of available funding in support of leaseholders and will continue to do so,” a spokesperson told the BBC.

Emergency evacuation plans

As well as the economic burden, there are safety concerns about apartment blocks that come with cladding – how to escape in the event of a fire.

The Grenfell Tower Fire Inquiry has heard that at least 22 disabled people lived above the 10th floor of the 24-storey west London block at the time of the fire. The blaze, which broke out on 14 June 2017, killed 72 people.

The inquiry chairman, Sir Martin Moore-Bick, said personal emergency evacuation plans for disabled people should be required by law in all high-rise blocks – helping to protect more than 160,000 vulnerable people in England and Wales.

But the Home Office has proposed evacuation plans for far fewer disabled people.

Only about 5,300 disabled people who are living in tower blocks will have access to Waking Watch – a fire safety system where staff continually patrol all floors and the external areas of a high risk building to give warning to evacuate in the event of a fire. A consultation is ongoing.

Disability rights campaigners say the unique needs of those with mobility issues have been overlooked in the wider debate about cladding.

“We’re going to be pressing the government to make it law for these emergency evacuation plans to be the standard,” said Fazilet Hadi, head of policy at Disability Rights UK.

“The cladding crisis is having two enormous effects on disabled leaseholders. First, the costs are astronomical. Disabled people haven’t got the money to meet them.

“The second huge issue is people having the peace of mind that in a fire they have an emergency route to safety.”

‘Devastated and betrayed’

Disabled people are more likely than non-disabled people to face barriers to paid employment and work fewer hours, according to analysis from the Joseph Rowntree Foundation.

It’s estimated that four million people with disabilities in the UK are living in poverty. Yet many are now being asked to pay tens of thousands of pounds for building repairs and other interim fire safety measures.

Former solicitor Sarah Rennie, who is 35, has a muscle wasting condition and is supported by assistants 24 hours a day.

She bought her two-bedroom flat in Birmingham in 2008 with help from her parents. As a wheelchair user, it’s been specially adapted to her needs.

In 2019, Ms Rennie and 180 other leaseholders at Brindley House were told that their homes were wrapped in dangerous cladding.

Ms Rennie’s share of the repair bill could be more than £50,000, if the work isn’t covered by government funding.

“You feel very devastated and betrayed,” said Ms Rennie. “I would need to look at a second mortgage (to pay the bill), but for me that’s really difficult.

“I’ve already had a mortgage which I’ve paid off because I knew I would not be able to work longer due to my disability.”

She added that as a disabled person, often there is a feeling that one’s independence and control could be taken away at any point.

“I’ve just built up a small modest little life for myself and the fact that that could be taken away from me is frightening,” she said.

Ms Rennie, who works as an accessibility specialist in the transport sector, said other costs were going up rapidly too.

“My service charge alone is £500 a month and that covers insurance bills and fire warden patrols, known as Waking Watch. Many of us will be bankrupt before the works have even started.”

To add to her worries, the firefighting lift in Ms Rennie’s block does not meet fire standards.

As a wheelchair user, she has worked with her building’s management to get an evacuation chair and an emergency exit plan.

Elsewhere, others have not been so lucky and the debate around who should pay for these emergency plans has become toxic.

Ms Rennie said some disabled people have been told “you shouldn’t live in high rise blocks, you should be in a bungalow”.

The government says it is implementing the Phase 1 recommendations of the Grenfell Inquiry to ensure such a tragedy can never happen again.

“We continue to work with disability groups to improve accessible housing and to develop improved guidance for evacuation,” a government spokesperson said.

The government has also allocated £5bn to protect those in the highest risk buildings from unaffordable costs, but that funding “does not absolve building owners of the responsibility to ensure their buildings are safe”.

Ms Rennie and Ms Hulme have co-founded a new campaign group called CladDAG Leaseholder Disability Action Group, to raise awareness of the complex ways in which thousands of disabled leaseholders are affected by the escalating building safety crisis.

Dating & Disability – How To Navigate The Agencies

March 22, 2021

Recently journalist Lucy Webster wanted to join a matchmaking website but, before the company took her subscription fee, they warned she might find it difficult. Lucy was upset by the response and shared their email on social media.

On this week’s podcast we hear stories from disabled people who have used online dating agencies, as well as speaking to a representative from the industry. What should disabled people expect?

Protect, Respect, Connect: The Full Report Into DNACPR During Covid-19

March 22, 2021

Same Difference strongly believes that all human life is always equally valuable.

With this in mind, we strongly oppose DNACPR orders without the full permission of the patient or, if they lack capacity, their family. This permission should only be obtained after a full medical explanation of the individual case to the patient or the person who makes these decisions for them.

No one should ever feel forced into making this extremely important decision. No one should ever feel as if they have ‘signed their life away,’ as one father whose case is included in this report put it to his daughter on the phone.

Blanket DNACPRs on care homes, age groups or for a group of people with any disability are certainly unacceptable at the highest level in our view.

The report is full of details, many of them upsetting, of cases in which DNACPRs were used during the pandemic. Anyone interested in reading the full report can do so through the link above.

We feel that we must ask an upsetting but very important question. Many of us have seen the upsetting statistics about how much more likely people with disabilities are to die of Covid. We at Same Difference fully understand that many disabled people do have underlying health conditions that would make them more likely to contract a severe and life threatening level of Covid anyway. However, we now can’t help wondering whether the policies around DNACPRs used during the pandemic have played any role in the statistics around Covid, disability and death that we have found so worrying.

We call for all organisations to read this report, and on all medical professionals to never again place a DNACPR on any person without full explanation and full permission.

 

 

Report shows Government must act on “system in crisis”, National Deaf Children’s Society says

March 19, 2021

 A press release:

The National Deaf Children’s Society has responded to the new report from the Education Policy Institute and the Nuffield Foundation, which shows alarming inconsistencies in the support given to children with special educational needs and disabilities (SEND).

 

In response, Ian Noon, Head of Policy at the National Deaf Children’s Society, said: 

“This report is extremely concerning and it sadly confirms what parents of deaf children have been telling us for years. There were already wild fluctuations in the support given to children with SEND, and now Covid-19 has made things even worse. 

“All of these children are entitled to effective, tailored support at school and their teachers should get the specialist advice they need. This simply isn’t being delivered consistently and it’s the children who are left to struggle on alone. 

“The evidence is as clear as it is damning. It now falls to the Government to take stock of these findings, address a system in crisis and make real, lasting change through the upcoming SEND Review.”

Blanket ‘Do Not Resuscitate’ Orders Imposed On English Care Homes, Finds CQC

March 18, 2021

Blanket orders not to resuscitate some care home residents at the start of the Covid pandemic have been identified in a report by England’s care regulator.

A report published by the Care Quality Commission (CQC) found disturbing variations in people’s experiences of do not attempt cardiopulmonary resuscitation (DNACPR) decisions during the pandemic.

Best practice is for proper discussions to be held with the person involved and/or their relatives. While examples of good practice were identified, some people were not properly involved in decisions or were unaware that such an important decision about their care had been made. Poor record-keeping, and a lack of oversight and scrutiny of the decisions being made, was identified.

The report, Protect, respect, connect – decisions about living and dying well during Covid-19, calls for a ministerial oversight group – working with partners in health and social care, local government and the voluntary sector – to take responsibility for delivering improvements in this area.

The report surveyed a range of individuals and organisations, including care providers and members of the public, and identified:

  • Serious concerns about breaches of some individuals’ human rights
  • Significant increase in DNACPRs put in place in care homes at the beginning of the pandemic, from 16,876 to 26,555
  • 119 adult social care providers felt they had been subjected to blanket DNACPR decisions since the start of the pandemic
  • A GP sent DNACPR letters to care homes asking them to put blanket DNACPRs in place
  • In one care home a blanket DNACPR was applied to everyone over 80 with dementia

Healthcare professionals emphasise that resuscitation is both invasive and traumatic with only a 15-20% survival rate when performed in hospitals and a 5-10% success rate when performed outside hospitals.Advertisementhttps://8f28834ea9f52a9183e64d0304399682.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

However, concerns have been raised about both blanket DNACPR orders being put in place and such instructions being recorded on patients’ records without discussion or informed consent being given.

Eleanor Sturge lost her 62-year-old husband, who was in a care home following a stroke, to Covid last March. She was notified without any prior discussion that a blanket DNACPR was being placed on people in the care home. A letter from the GP stated: “Dear [care home resident relative]” and added that after looking at the medical notes and using a computer algorithm: “I realise there is less than one per cent chance of resuscitation being successful. For this reason I have signed a do not resuscitate order in their nursing notes.”

The Department of Health and Social Care asked CQC to conduct a rapid review of how DNACPR decisions were used during the coronavirus pandemic, building on concerns that they were being inappropriately applied to groups of people without their knowledge.

The first phase of a review by the CQC in December 2020 found that the orders were wrongly allocated to some care home residents during the Covid-19 pandemic, causing potentially avoidable deaths.

Rosie Benneyworth, the chief inspector of primary medical services and integrated care at the Care Quality Commission, said: “Personalised and compassionate advance care planning, including DNACPR decisions, is a vital part of good quality care. Done properly, it can offer reassurance and comfort for people and their loves ones – before and during difficult times. It is vital we get this right and ensure better end-of-life care as a whole health and social care system, with health and social care providers, local government and the voluntary sector working together.”

DNR Orders Reviewed By CQC

March 18, 2021

An official investigation will be published on Thursday 18 March, looking into the misuse of do not resuscitate orders.

Throughout the pandemic charities have highlighted that the orders, which limit the medical help that people can receive, have been repeatedly placed on people with learning disabilities without their families being consulted.

People with learning disabilities are up to six imes more likely to die of Covid than the general population.

The BBC has spoken to one family who say they didn’t know their sister was given a do not resuscitate order until she died.

Social Care Leaders Warn Of Funding ‘Cliff Edge’

March 18, 2021

Leading care organisations in England are warning of a “cliff edge” when emergency funding to support infection control and visits during the pandemic runs out in two weeks.

Some providers fear the financial pressure could force them to close.

They say the budget was a missed chance to tackle the short- and long-term funding crisis in adult social care.

In 2019, on his first day as prime minister, Boris Johnson committed to ‘fix the crisis in social care‘.

Ministers say they will bring forward proposals this year.

The emergency funds are to help care homes and home care services with additional Covid costs, including infection control, visiting measures and extra staffing.

Testing costs

The Victory Care home in Chatham, Kent, which normally cares for 60 people, has used some of its emergency money on staff to organise visits and testing.

“Everything from extra newsletters, Zoom calls, the telephone calls, and then there will be additional resources put into ensuring people are tested, ensuring the tests are logged so that we know what our team’s results are,” says Raina Summerson, chief executive of Agincare, which runs the home.

Gerry Smith, whose mother Julia moved there last October, is tested every time she visits.

“We haven’t got out of the pandemic yet, so we still need to keep the precautions going for a bit longer until everyone’s had the vaccine that’s going to have the vaccine and the numbers have dropped,” says Ms Smith.

But if emergency funding stops in two weeks, there are fears about the impact on care home visiting, testing and even the survival of some providers.

Ms Summerson says whilst Agincare is secure, the care homes and home care services she runs have seen wage bills rise between 10% and 18% during the pandemic.

But, she says, fee rates offered by councils and the NHS for the year ahead are mainly staying the same or increasing by 1-2%.

“We will still have costs related to additional staffing for visiting, we will still need to be doing testing regularly, we will still need to be doing robust – more so than usual – infection control procedures,” she says.

“Who will suffer through this lack of funding? People who desperately need services, and our workforce who have given so much over this last year. It feels like a real slap in the face for them.”

‘Missed chance’

The seven organisations who signed the statement call themselves an “unprecedented alliance” of local politicians, council social service directors, care providers and people who need support.

They say the absence of social care in the Budget was “disappointing and a missed chance to provide much-needed certainty”.

They want the government to publish its long-promised social care reform plan by the summer.

Long-term needs

Three years ago, Christie Michael and her mother Maria moved from one area where they were both eligible for council support to another with a very different approach.

Maria has regular epileptic seizures, renal failure and diabetes.

Christie has a rare condition that means her joints dislocate very easily.

But once they moved, Christie was not entitled to local authority funded help, and rather than four hours support a day, her mum was offered an hour and 15 minutes.

They say the council told them they would have to pay £75 a week towards the care.

“We decided to stop the care, we just could not afford it.

“We already needed food banks before when we were getting free care,” says Christie.

She is now her mother’s full-time carer.

“I feel like I owe her and I want to do it, but it means that I don’t have a life and it means that my physical health and my mental health is declining as well.”

Christie describes the care system as broken.

“I absolutely do not think you should get social care according to your postcode.

“It should be nationwide, available to everyone.”

The full list of signatories is:

  • Association of Directors of Adult Social Services
  • Local Government Association
  • Think Local Act Personal
  • Care Providers Alliance
  • Care and Support Alliance
  • Social Care Future
  • Social Care Institute for Excellence.

The Gruffalo: Scent Kit Brings Story To Life For Visually Impaired

March 17, 2021

A charity for the blind and partially sighted has produced a scent kit to accompany popular children’s storybook The Gruffalo.

Guide Dogs UK has created a kit of nasal inhalers to represent the Gruffalo and the four creatures who meet him, Snake, Fox, Owl and Mouse.

Mouse smells like cupcakes, Fox has the scent of freshly cut grass, Owl is a cup of tea and Snake has a smoky scent.

The Gruffalo has a leathery, farmyard smell evoking the deep, dark wood.

The much-loved story, written by Julia Donaldson and illustrated by Axel Scheffler, was first published in 1999.

It has sold more than 13 million copies, winning several prizes for children’s literature, and has been developed into plays on the West End and Broadway. It has also been adapted as an Oscar-nominated animated film.

‘Really fun’

Josie, eight, from Bath, said it was “really exciting” testing out the scent kit with her brother Wolf and father Roger Whalley.

She had a stroke at birth resulting in brain damage that caused cerebral vision impairment.

Josie said: “It’s exciting and really fun to listen to the story with the smells, it’s great to imagine the scenes with the scents.

“My favourite was the owl smell but the worst was the Gruffalo, which smelt like my dog’s poo.”

Mr Whalley said: “This concept is fantastic, it meant that Josie and her brother, who has no visual impairments, were equal.

“It’s a completely new way of experiencing the story where Josie talks about her imagination and discusses it with her brother – it’s very inclusive and we all loved it.”

Working with publishers Macmillan Children’s Books and Magic Light Pictures, Guide Dogs UK is giving 150 scent kits to families with visually impaired children that it supports.

BBC Young Reporter: ‘This Is The Real Tourette’s’

March 17, 2021

A teenage girl who has Tourette’s syndrome wants people to understand what it’s like to live with.

Wilamena, who is 14 and from Cornwall, is one of the BBC’s Young Reporters. She was diagnosed with the condition at the age of nine, and wants to get away from the portrayal of “the swearing disease”.

She’s been speaking to other musicians about their experiences and filmed and edited this video to investigate the effect of playing music on the involuntary movements or sounds, called tics, that people with Tourette’s can have.

Sound Of Metal Gets 6 Oscar Nominations

March 16, 2021

There has been a lot of talk about ethnic diversity at this year’s Oscars. This year’s nominees are the most ethnically diverse group ever, with 9 nominees from ethnic minorities.

Same Difference welcomes this warmly.

What we welcome even more warmly is the 6 nominations for Sound Of Metal, an Amazon Prime Video film about a hard rock drummer who loses his hearing.

One of these has gone to British Asian actor Riz Ahmed for best actor. The film has also been nominated for Best Picture, Best Supporting Actor, Best Original Screenplay, Best Film Editing and Best Sound.

We thank the Oscars for including a film with a disabled protagonist among its nominees. We wish the cast and crew every success.

For a bit of fun, here’s the trailer:

Covid: Judge Rules Man With Learning Difficulties Should Be Vaccinated

March 15, 2021

A man with severe learning difficulties should have a Covid-19 vaccine, despite his family’s objections, a judge ruled.

Specialists said the man, who is in his 30s, was “clinically vulnerable” and in a “priority group” for vaccination.

But the man’s parents objected and raised a number of concerns about alleged side-effects.

Judge Jonathan Butler agreed with NHS Tameside & Glossop Clinical Commissioning Group that vaccination was in his best interests.

The judge, who is based in Manchester, considered the case at a hearing in the Court of Protection, where issues relating to people who lack the mental capacity to make decisions are analysed.

He did not name the man in his written ruling, published on Friday.

A number of specialists involved in the man’s care all thought he should be vaccinated but his father claimed the vaccine had not been tested sufficiently and did not stop people contracting Covid-19.

He added the long-term side effects on people with severe health issues were unknown.

The man’s mother and brother agreed.

Judge Butler said the man’s father had outlined his concerns with “conviction and great clarity”.

‘No clinical base’

He added: “I have no doubt whatsoever that his objections are founded on a love for (his son) and a wish to ensure that he comes to no harm.

“His objections were not intrinsically illogical. They were certainly not deliberately obstructive.

“They were made upon the basis as to what he regards as being in the best interests of (his son).

“That concern for his son does him credit.”

But he said the family’s objections had “no clinical evidence base”.

He said the man was vulnerable and said there was “overwhelming objective evidence of the magnetic advantage of a vaccination”.

The judge said he had ruled that vaccination was in the man’s best interests, but had not authorised “physical intervention”.

Health authority bosses had said the vaccine would not be administered if any “form of physical intervention” was required.

DWP Changes To Face-To-Face Assessments For PIP And Other Health Benefits Coming This Month

March 15, 2021

The UK Government has passed legislation which will allow the Department for Work and Pensions (DWP) to invite health benefit claimants to participate in an assessment by video call.

From March 25, video calls will be an option for DWP health professionals when interviewing and assessing the needs of people making claims for Personal Independence Payment (PIP), Universal Credit and Employment Support Allowance (ESA).

Face-to-face consultations have been suspended since March 2020 due to the coronavirus pandemic and subsequent lockdown restrictions – these continue to be replaced by telephone and paper-based assessments.

The changes to legislation means that anyone applying for disability or health benefits may be invited to attend either a telephone, face-to-face or video call assessment as part of their application.

Legislation guidance states: “The amendments enable medical examinations and consultations to be conducted as between a claimant and an assessor approved by the Secretary of State in person, by telephone or by video as part of the process for determining entitlement to Industrial Injuries Disablement Benefit, Employment and Support Allowance, Personal Independence Payment and Universal Credit.”

The guidance added: “A full impact assessment has not been produced for this instrument as no, or no significant, impact on the private, voluntary or public sector is foreseen.”

In a letter to Justin Tomlinson MP, the Minister for Disabled People, Health and Work, about the changes to regulations, Dr Stephen Brien, Chair of the Social Security Advisory Committee (SSAC) wrote: “These regulations provide immediate legislative comfort for the Department who, in responding to the challenges arising from social distancing requirements that were introduced at the outset of the COVID-19 pandemic, has suspended face-to-face health assessments and is relying on telephony to maintain service delivery.Finance DailyPeople Born 1951-1991 (With No Life Insurance) Should Claim This Benefit In February 2021ReassuredPeople Born 1951 – 1979 Are In For A Treat This Marchby TaboolaSponsored Links

“Over the longer-term, the regulations also provide a legislative framework that will enable the Department and its providers to introduce a richer mix of assessment channels, providing a choice between face-to-face, telephone and video assessments.”138212091369

He added that the addition of video calls as an option “will help to improve customer service by enabling the Department to tailor the assessment channel to meet the needs of different claimants” and “help to ensure the most appropriate channel is used to enable an appropriate outcome for the claimant.”

The DWP has conducted research with claimants about their experience of telephone assessments during the pandemic and that the findings are due to be published in spring 2021.

You can read the Social Security (Claims and Payments, Employment and Support Allowance, Personal Independence Payment and Universal Credit) (Telephone and Video Assessment) (Amendment) Regulations 2021 legislation online here.

Guide Dogs For The Blind Backs Nottinghamshire Police Plan For Dog Theft Officer

March 15, 2021

A police force has said it will appoint a dedicated senior officer to tackle dog thefts in what it believes is the first move of its kind in the country.

It is estimated dog thefts have risen by 250% nationwide following increased demand during the pandemic.

Nottinghamshire Police said there had been “growing alarm” among dog owners over the problem.

A chief inspector will be appointed to the new role and the force said it will demand tougher sentences for offenders.

Deputy police and crime commissioner for Nottinghamshire, Emma Foody, said: “There is growing alarm, both locally and nationally, over the threat of dog theft.

“This has been fuelled by a number of distressing incidents which have eroded public confidence.”

In a recent survey of dog owners by the force, which attracted nearly 18,000 responses, more than 13,000 said they were now more fearful of walking their pets during the day.

Sue Dunn, who had her dog Sadie stolen in Newark in August last year, said it was “the worst day of my life”.

“I was really worried. My dog is everything to me,” she said.

Ms Dunn, who has now got her dog back, said the appointment of a dedicated officer in Nottinghamshire was “long overdue”.

Wayne May, from the organisation Dog Lost, said in October last year the level of dog thefts was the “worst” he had known in his 30-year career.

He put it down to criminals capitalising on the demand for dogs during the pandemic.

A well as a dedicated officer, the force said it would also issue new video guidance on keeping pets safe and work with dog welfare organisations to demand tougher sentences for offenders.

Guide Dogs for the Blind has already pledged their support.

Tim Stafford, from the charity, said: “This year, for the first time, we have been informed of a couple of incidents when someone has attempted to take a guide dog from its owner.

“While such incidents are very rare in relation to how many guide dog partnerships our charity supports, we are concerned about how fearful our guide dog owners are of being a potential target at the moment.”

New PIP2 ‘How Your Disability Affects You’ Form

March 12, 2021

With many thanks to Benefits And Work.

 

Claimants have begun receiving a new PIP2 ‘How Your Disability Affects You’ form in the last few days, though there has been no announcement from the DWP about any changes and it is not clear if this is a pilot or a wholesale change.

The new form is longer but actually has fewer questions.

The tick boxes for aids and appliances and for help from another person have gone.

For most activities you are asked, for example:

Does your condition affect you dressing and undressing.

No

Yes

There is then some standard text though the wording varies occasionally according to the activity:

For each difficulty, please tell us:

How often you have this difficulty – tell us about both good days and bad days

What the difficulty is

Why you have it, or how it relates to your condition

Any aids or adaptations you use, or help you get from another person

Any help you feel you need but do not get

Then there are two sample answers, for example:

“About three times a week, I have trouble dressing my upper body because my hands shake too much to do up the buttons on my shirt. I use a button hook to do the buttons on my shirt”

“Most days my partner has to remind me to get dressed during the day”

Most, but not all of the sample answers would lead to an award of points.

The set of questions followed by examples looks remarkably similar to the technique we use in our Benefits and Work PIP guides, though neither the questions nor the sample answers are as detailed. 

There is, however, a massive disparity between the size of the sample answers and the size of the box in which to give your own answer, which is a full side of A4 for most activities.  The onus seems now to be on the claimant to provide detailed information in a lengthy written format without the benefit of any tick boxes.

Managing your treatments has been split into two separate sections. There are now separate pages for monitoring changes/taking medication and for therapies at home.

Some activities have changed their names: Going out is now Planning and following a journey. Making decisions about money is now Managing money.

Some sections of the form have moved around: section 1 and section 2 seem to have changed places, for example.

We’ll provide more information once we know whether this is a small scale trial or a major change.

I Can’t Say My Name- Stammering In The Spotlight

March 12, 2021

Around one and a half million adults in the UK have a stammer. For some – it is obvious when they speak. For many others, it’s something they manage to hide – sometimes from even those closest to them.

Former Welsh international Mark Jones and actor Sir Michael Palin, whose father had a stammer, talk about the speech disorder.

I can’t say my name – Stammering in the Spotlight – is on BBC IPlayer.

You can get more information and help about stammering from the charity Stamma.

Cancer Patients ‘Lack Same Protection’ After First Jab Finds Small Study

March 11, 2021

Cancer patients are much less protected against Covid-19 than other people after one dose of the Pfizer vaccine, the first real-world study in this area suggests.

With a 12-week wait for the second dose this could leave them vulnerable, says the King’s College London and Francis Crick Institute research team.

An early second dose appeared to boost cancer patients’ protection.

Cancer charities are calling for the vaccine strategy to be reviewed.

But Cancer Research UK said the small study had not yet been reviewed by other scientists and people undergoing cancer treatment should continue to follow the advice of their doctors.

The government said it was focused on “saving lives” and the antibody response “was only part of the protection provided by the vaccine”.

About 1.2 million people at very high risk of being seriously ill with Covid-19 were prioritised for a first vaccine dose in the first phase of the UK rollout, which includes people with specific cancers.

The UK government decided to extend the gap between first and second jabs from three to 12 weeks in late December to give more people some protection as soon as possible.

Dr Sheeba Irshad, oncologist and senior study author from King’s College London, said the findings were “really worrying” and recommended an urgent review of the timing of doses for people in clinically extremely vulnerable groups.

“Until then, it is important that cancer patients continue to observe all public health measures in place such as social distancing and shielding when attending hospitals, even after vaccination,” she said.

The study, which recruited 205 people, included 151 with solid cancers, such as lung, breast and bowel, or blood cancers.

The researchers tested volunteers for antibodies and T-cells in their blood, which signals that the immune system can protect against illness from the virus in the future.

Three weeks after one dose, an antibody response was found in:

  • 39% of people with solid cancers
  • 13% of people with blood cancer
  • 97% of people with no cancer

Following a second dose three weeks after the first, which some cancer patients received, there was a sharp rise in their antibody response against the coronavirus, to 95%.

But among those who had to wait longer for their second dose, there was no real improvement in protection.

Five weeks after the first dose, an antibody response was detected in:

  • 43% of people with solid cancers
  • 8% of people with blood cancer
  • 100% of people with no cancer

In trials of the Pfizer vaccine, two doses were given three weeks apart and although a longer gap between doses works for healthy individuals, the researchers say cancer patients do not respond in the same way.

“One size does not fit all,” said Dr Irshad.

“Cancer treatments have profound effects on the immune system and cancer patients’ immune mechanisms are inferior.

“We need to be concerned about other vaccines for this population too – they do need a second dose quickly.”

Dr Irshad also said leaving people unprotected for many weeks could give new variants the space to emerge and allow the virus to spread among family members caring for patients.

People with compromised immune systems were not included in clinical trials of the vaccine, although previous studies suggested it may not work as well in this group.

‘Follow doctors’ advice’

Cancer Research UK said the small study was “interesting” but there could still be limitations with the results.

Martin Ledwick, the charity’s head information nurse, said: “We know that this information could be worrying, but anyone undergoing cancer treatment should continue to follow the advice of their doctors, and we encourage all who can to take up the vaccine.”

Breast Cancer Now has called on the UK’s vaccine committee, the JCVI, to “urgently review the evidence presented in this study and consider adapting its strategy” to give people with cancer both doses within three weeks.

Blood Cancer UK echoed this call, saying more research was needed urgently so that people don’t “face a future of shielding indefinitely, not knowing whether they are protected”. They added that blood cancer patients should still definitely have the vaccine.

Prof Adrian Hayday, study author from King’s College London and the Francis Crick Institute said: “The vaccine is very impressive in its impact on healthy individuals and our study shows that it can clearly bring immense benefit to cancer patients too, but in most cases this is only after boosting.”

The study will continue to follow cancer patients after their vaccinations for up to six months.

Ellie Challis: Tokyo Paralympics Hopeful Wants ‘To Do Things Everyone Says I Can’t’

March 11, 2021

For Ellie Challis, the swimming pool is her special place.

“Swimming gives me the most freedom and time to think. It’s just you and the water,” the Paralympic hopeful told BBC Sport.

“It is nice just to be able to get away from everything.

“I’m a teenager and I love my phone, but that’s the one time of the day when I’m not around it.”

In many ways, the 16-year-old is just like any other girl her age, but when she was just 16 months old, she developed meningitis.

The disease ravaged her tiny body and left her fighting for life, resulting in her having to have both legs amputated below the knee and both arms below the elbow.

But Challis, who has a twin sister Sophie, grew up in Essex with a passion for sport and a fierce determination which now means she is hoping to make a splash at the rearranged Tokyo Paralympics later this year.

And you underestimate her at your peril.

“I want to do things everyone says I can’t, just to prove them wrong,” she says.

“I’ve done lots of sports – I used to run on my prosthetic blades, I did trampolining in school, snowboarding, wheelchair football, netball and horse riding – although it’s just swimming now.

“For me, sport was the way to be involved with people and it has definitely helped me make friends and be more social.

“Everyone assumes you can’t do a lot until they actually meet you and see everything you can do. I pretty much do everything by myself. I don’t need much help with anything.

“I’ve recently learned to tie up my own hair, which was one thing I thought I’d never be able to do, but I’ve managed that!”

Her dad Paul was the driving force to get Ellie into the water so she could be safe on family holidays, but even he could never have imagined what his daughter has gone on to achieve.

“When we were on holiday, people just assumed I couldn’t swim,” she explains. “Dad would literally throw me into the pool – knowing I could – but everyone else would just be really shocked.

“I was about 10 before I learned to swim properly, and it was when I saw someone else who had lost their limbs that led me to think ‘Oh, I can do it’. It totally changed my mind.”

In para-swimming, there are 10 different sport classes for athletes with physical impairment, numbered 1-10 – the lower the number, the more severe the limitations.

Challis, who swims in the S3 category is the only elite British female in her class and the only Briton, male or female, in the S1-S4 categories.

The first time she raced against other S3 swimmers was at the 2019 World Championships in London, where, cheered on by friends and family, she announced herself on the international scene with a brilliant bronze in the 50m backstroke.

The event also saw her become a team-mate of her swimming hero Ellie Simmonds, whose 2012 Paralympic golds were another huge source of inspiration.

After a disrupted 2020 with the pandemic and the postponement of the Paralympics, Challis says that the extra 12 months preparation have helped her.

She’s based at the British Para-Swimming National Performance Centre in Manchester, she started her season with new British records in the 50m backstroke and 100m freestyle at the recent Manchester International Swim Meet, her first competition in almost a year.

She now needs to impress at next month’s British Para Swimming International in Sheffield, which doubles as the Paralympic trials.

“Initially, I was looking at going to Tokyo with no pressure and just to have the experience of being at a Games, because it is so different from any other competition, and then look towards Paris in 2024 when I’ll have learned more and I know what I want to do.

“But I’ve been able to get faster in lockdown, so it will be good to see where I am at trials. I think the Paralympics will be very different for everyone this time because nobody knows what anyone else is doing.”

Challis’ emergence onto the international scene has given particular pleasure to British Paralympian Fran Williamson, whose S3 domestic records she is now rewriting.

“My records have stood for a long time and for a while I thought they may never be broken,” says Williamson, who was born with cerebral palsy and won silver and bronze medals at the 2004 Athens Olympics and 2008 Beijing Games.

“I think many people assumed that was exactly what I wanted. But that’s not true.

“Ellie and I are very different athletes with different impairments, but it is great to see someone digging deep and finally taking my place in the GB line-up and be willing to put the hard work into achieving her goals.”

As well as swimming, Challis is studying cake making in college where learning to write with chocolate and baking a special vanilla sponge cake for her family at Christmas have been among her proudest achievements.

“I use the same equipment as everyone else but I have a sticky mat to put my bowl on so it doesn’t slip,” she explains.

“College gives me something else from swimming. If I was doing something related to sport, then it would still be about swimming.

“I wanted to do something different and have different friends.”

And she also wants be a trailblazer for what people with more severe impairments can achieve, both in and out of the pool.

“Hopefully more people like me can see me and think they can do sport as well – it doesn’t have to be swimming.

“I want to get the lower classes in para-swimming out there a bit more because people don’t know a lot about them and hopefully they will get more attention.

“It’s harder for disabled people to get involved in sport, but when you get involved you really enjoy it.”

Telephone And Video PIP And ESA Assessments Now Enshrined In Law

March 10, 2021

With many thanks to Benefits And Work.

 

The government has passed legislation allowing the DWP to require a PIP or ESA claimant to take part in an assessment by telephone or by video as alternatives to a face-to-face assessment.

The new regulations, came into force on 25 March and enshrine all three options in law.

In the case of PIP, the regulations already stipulated that an assessment could be in person or by telephone, but the words ‘or by video’ have now been added.

In the case of ESA, the words ‘in person, by telephone or by video’ have been added.

You can download the new regulations from this link.

Claimant Successfully Sues Atos And Sends In The Bailiffs When They Don’t Pay Up

March 10, 2021

With many thanks to Benefits And Work.

 

A claimant has successfully sued Atos for negligence and failure of duty of care and then sent in the bailiffs when they failed to pay up, the Disability News Service (DNS) has revealed.

The claimant, known as Rebecca, went to the County Court to ask for compensation because of the two year fight she had to get her PIP reinstated, after it was wrongly stopped following a PIP assessment in 2018.

Rebecca has epilepsy and a resulting heart condition, anxiety, depression and memory problems. Despite this, and the fact she was receiving the enhanced daily living component, she received zero points for daily living following her PIP assessment.

Fortunately, Rebecca had recorded her assessment.

The recording was listened to by an appeal panel, who then compared it to the assessor’s account of what had been said.

The panel then found in Rebecca’s favour, restoring her entitlement to the enhanced rate of the PIP daily living component until 2023.

Rebecca was so angry at the treatment she had received from Atos that she sued them through the County Court for ‘mental distress, anxiety and hardship’. Atos made no attempt to defend the claim.

The County Court found in Rebecca’s favour and awarded her compensation of eight per cent of the arears and a further £1,000 in damages. The final total was £2,500.

When Atos failed to pay up, Rebecca arranged for enforcement officers to visit their offices in London, resulting in an extra £2,000 in costs to the company, which finally had to pay up.

You can read the full story on the DNS website

Gordon McQueen: Daughter Hayley Wants Limit On Heading After Father’s Dementia Diagnosis

March 10, 2021

Hayley McQueen says there should be a change in the football laws to limit heading after her father, former Scotland defender Gordon, was diagnosed with vascular dementia.

McQueen wants future generations of footballers to be better protected now the risks are more widely known.

“You don’t go into football thinking you’re going to get brain damage,” she said.

“There are lots of footballers out there now thinking, ‘is it me next?'”

McQueen, a sports journalist and broadcaster, told BBC Breakfast’s Sally Nugent that her father has no regrets about his career because no-one knew of the potential risks.

The 68-year-old made almost 350 appearances for St Mirren, Leeds, Manchester United and Scotland between 1970 and 1985.

“I don’t think I realised how much my dad used his head,” said McQueen. “I didn’t realise that it was over and over and over in training for years and years.

“You go back to childhood and heading a ball against a brick wall because if you didn’t have anyone to play with, that’s what you did.

“There have been moments when I said I can’t believe that the thing that has given him so much love has so cruelly taken so much of him away from us.

“He scored some memorable headers. One of the pictures at home is him leaping into the air and scoring against England and he’s very proud of that.

“But he says maybe he would have done things different in training if they were warned. You can’t get angry about that; there is no-one to blame. They didn’t know, but we know now and someone will be to blame if we don’t do something about it.”

Research commissioned by the Football Association and the Professional Footballers’ Association (PFA) in 2019 found that former footballers are three and a half times more likely to die from degenerative brain diseases.

The study began after claims that former West Brom striker Jeff Astle died at the age of 59 because of repeated head trauma. Astle’s family has been campaigning for more research into the issue.

In response to that study, heading has been banned during training for children aged 11 and under in England, Scotland and Northern Ireland.

“Cutting out heading in under-11s is a massive step forward, but what about in teen years when your brain is still developing?” McQueen said. “Football might change because of it – but so what? If it’s saving people’s lives and their futures then does it really matter?

“There needs to be changes in the law. Not just at under-11 level; it needs to be right through the professional game.”

A parliamentary inquiry into the link between sport and long-term brain injury has been launched with Professor Willie Stewart, who led the 2019 research, among a number of experts due to appear before MPs on Tuesday.

The PFA has set up a taskforce to examine the issue of brain injury diseases in football. Some former players have also agreed to take part in studies looking into the impact of head injuries.

In a statement, the FA said it has helped to “lead the way in ground-breaking research into the links with football” and has “a clear and unwavering commitment, both financially and with resource, to support objective, robust and thorough research going forward”.

It added: “Collaboration across football’s governing bodies is key in order to better understand this important issue collectively, and we firmly believe that all areas of football should come together for this meaningful cause.”

Hear Women’s Voices On Head Injuries In Sport Say Female Rugby Players

March 9, 2021

A former Wales rugby player who had a seizure, sickness and memory loss says female athletes should be heard in the discussions around sport head injuries.

Retired flanker Nic Evans said she had no memories of her first appearance at Twickenham as a result of concussion.

The UK digital, culture, media and sport committee is to begin an inquiry into sport and long-term brain injury.

Governing body, World Rugby, said the welfare of all participants was its ongoing priority.

Evans, 43, who played for Wasps Ladies, will undergo tests this month to assess whether she is facing “the worst-case scenario” after suffering what she believes could be hundreds of concussions in her career.

Her first appearance at Twickenham should be a cherished memory but instead it is a blank.

“I don’t remember any of the game,” she said.

“I don’t remember playing, I remember before the game and then I remember being home in Wales and I think that happened throughout my playing career.”

Evans, originally from Caerphilly and now a lecturer, can recall one incident in which she was tip-tackled on to a dry, hard pitch resulting in a seizure lasting several minutes.

“I lost my [driving] licence for a year because they weren’t sure whether it was epilepsy or concussive seizure,” she said.

“That happened in the June, I was back in pre-season training in the July.

“I probably spent the whole of that year training and playing with really bad headaches, feeling really nauseous, feeling really sick.”

The player-turned-coach said, at the time, she just wanted to play rugby but she had not ever considered she could have been doing “long-term damage”.

“I wouldn’t have put myself at risk of not being able to live fully later in life,” the mother-of-three added.

On Tuesday, MPs will question consultant neuropathologist Prof Willie Stewart and neurodegenerative disease specialist Prof Craig Ritchie.

The DCMS committee will look at the role of national governing bodies, their responsibilities to understand risks involved for players, and what actions might be taken to mitigate them.

Debates about the links between sport – and specifically rugby – with serious head injury were sparked again when former Wales international Alix Popham and former England World cup winner Steve Thompson launched a legal action after being diagnosed with early onset dementia last year.

The Professional Footballers’ Association is also setting up a taskforce to further examine the issue of brain injury disease in football, following high profile campaigns by families of some former players.

Evans said: “I got really frustrated really because I read all these stories about the men in the game and I just thought we play too.

“I work within PE and sport and a lot of sports science research is about men, and only now are we starting to see sport science about women because we are different, our bodies are different, our physiology is different.

“Do the protocols need to be different because women suffer worse concussions? Maybe.

“I don’t have the answers but what I do think is really important is that women are at the table too. Our stories also need to be considered.”

Swansea University research from 2020 suggested female rugby players were at a greater risk of suffering concussion than men – and the effects were more severe.

Elizabeth Williams, a senior lecturer in biomedics, said men and women were more likely to suffer different kinds of head impacts and women’s brains may have a higher risk of injury when subjected to the same external force.

Tonia Antoniazzi, Labour’s Gower MP and a former Wales international prop, said putting the focus on the men’s game was a “flawed” approach.

“What concerns me is there are very few women’s voices about their injuries and how they’ve had an impact on their lives throughout concussion,” she said.

“We need to be talking about it.

“It also needs to be a kind of call to arms to all our sisters that have played rugby since the ’80s to just take notice if they have got any issues around memory, any issues really.

“It’s not being looked into.”

In a statement, World Rugby said it continued “to invest in and collaborate with women-specific research to inform our injury-prevention programmes”.

The organisation added it was equally important that preventative technique is promoted, such as its “Active programme, which, if used regularly, has the potential to reduce concussion risk by up to 60%”.

The Department for Digital, Culture, Media and Sport said the inquiry was “evidence led”.

It said it was “accepting written evidence to the end of this month”.

Where Is The Prize Money In Para-Sport?

March 9, 2021

Hannah Cockroft may be one of Britain’s most recognisable Paralympians but she often has to correct people when they presume her bank balance “has a lot of zeros” on the end of it.

“It always shocks them when I say I actually pay more to enter the race than I win at the end of it,” she says.

“People expect that as a Paralympic gold medallist I’m going to be in the same boat as Jess Ennis-Hill and Mo Farah, but I’m not. If you ever expect to come into this and be a millionaire, you’re in the wrong job.”

Para-sport is not cheap when the cost of wheelchairs and other specialist equipment is added on top of the usual list of expenses.

It doesn’t help then, that prize money in para-sport is almost “non-existent”.

As organiser of the Paralympic Games, the International Paralympic Committee (IPC) does not offer prize money at either its flagship event, or in any competitions for the 10 sports for which it acts as international federation, including athletics and swimming.

Similarly, the international governing bodies for most other sports do not offer prize money for para-sports – in fact, the BBC Sport Prize Money in Sport study found only three para-sports which do offer prize money at some events.

These are wheelchair tennis, marathon racing, and para-equestrian.

“I think to be honest, I’m used to it,” Cockroft – a five-time Paralympic and 12-time world champion – tells BBC Sport.

Where is prize money on offer?

At Wimbledon in 2019, winners in the wheelchair singles took home £46,000, an 84% increase on 2016, when singles was first introduced to the tournament.

Winners in the wheelchair doubles earned £18,000 per pair, while the quads singles champion won £34,000, and similar figures are up for grabs at the other three Grand Slams, though still considerably lower than the takings won in the non-disabled tournaments.

Likewise, in wheelchair racing, the winners of the major marathons can take home a lucrative prize. In 2020, the winners of the Boston Marathon earned $25,000 (£17,905), while the London Marathon champions won $20,000 (£14,315).

At the World Equestrian Games in 2018, Para-dressage champions won $4,000 (£2,890), while the winners of this year’s wheelchair tournament at the Rugby League World Cup will receive prize money for the first time.

Compare that with visually-impaired Alpine skier Kelly Gallagher. The most she has ever won was a leg of ham.

“Someone said it was worth a lot of euros but we couldn’t take it out of the country so gave it away,” the Winter Paralympic gold medallist said in 2020.

British wheelchair tennis player Lucy Shuker said: “Tennis does compare favourably to other wheelchair sports, and I know that the Grand Slams offer a lot more, and the top four players could probably make a living from it.

“The rest of the tour, invariably you won’t win enough to pay to compete and with Covid impacting the world, there’ll be even less money.”

Does more need to be done in other areas first?

But before prize money has any chance of becoming the norm in para-sport, there are other things that “have to be put into place” according to Sarah Storey.

“None of us compete for the possibility of prize money, that’s kind of a given,” says Storey, winner of 14 Paralympic titles in swimming and cycling.

“Prize money is almost kicked down the road a long way.”

She says the IPC, UCI and other international federations have to “almost twist people’s arms” to host competitions, and other aspects, such as sponsorship and TV rights, need to become more commonplace before any “nice-to-haves” like prize money.

“What is it about the brand of this side of the sport that isn’t as appealing?” she tells BBC Sport. “How can they develop that brand to be something lucrative? To be something that’s wanted and sought after?”

Cockroft agrees. She organised a meet in 2019 which offered prize money courtesy of her own sponsor, and consequently saw lots of entries because “that’s what draws people in”.

Two years on, and largely due to the coronavirus pandemic, she has no races in the diary and does not know how she will qualify for the Tokyo Paralympics.

“I see it as this big cycle of we don’t get crowds because we don’t get media coverage, and then we don’t get sponsorship because we don’t get media coverage, and then there’s no prize money because there’s no sponsors,” she says.

“But then no-one sponsors it because no-one comes to watch it. We need everything to happen at once for this to go well.”

Both say it should have happened after the London 2012 Paralympics.

“What we need is exposure and profile,” Storey says. “We need to build the stories of athletes, we need visibility if we want the outcome of prize money for everybody.

“I’m really disappointed that there’s been no progress between the Games in London and now. We’ve spent nine years waiting for that next step.

“We’re almost at the point of saying we have lost the momentum of the [London] Paralympic Games in terms of the impact it could have had on para-sport.”

The IPC, which is based in Bonn, Germany, said it cannot pay prize money because of its “stated purpose as a non-profit organisation under German law”.

The BBC has approached the UCI, which governs Para-cycling, for comment.

Widow Sues NHS Over Deaf Husband’s ‘Diabolical’ Care

March 9, 2021

A woman is taking legal action against an NHS trust over the “diabolical” and discriminatory treatment of her profoundly deaf husband, who died of cancer in May last year.

Susan Kelly, who is also deaf, is angry that her husband, Ronnie, was at no point during two hospital admissions and an outpatient appointment provided with a British Sign Language (BSL) interpreter. Instead, her hearing daughter, Annie Hadfield, was asked to translate his terminal diagnosis, when he was told to “get his affairs in order” and given between two weeks and two months to live, while his wife was left outside the room. He died just over two weeks later at home.

Medical staff at Sheffield Teaching Hospitals NHS trust also placed a “do not resuscitate” (DNR) order on Kelly, who had Alzheimer’s disease, during his first hospital admission in late April without either his consent or consulting his wife or daughter. His family found out only after their barrister obtained his hospital notes.Advertisementhttps://d77a70cb49e64c7dab4a25d709d0324d.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

In her first media interview, Susan Kelly told the Observer through an interpreter: “I didn’t know what DNR meant. I had no idea. I was really shocked. They’d never asked me anything about it. That wasn’t right, it was wrong. Ronnie wouldn’t have known what it meant.”

Hadfield added: “I thought it was actually quite diabolical.”

The trust is undertaking a review to understand what happened. David Hughes, medical director, said: “We do acknowledge that we have more to do to support patients and relatives who have hearing impairments and it is an area of work we are actively looking at to make improvements.”

The case, brought by Derbyshire Law Centre, argues that the trust breached the Equality Act 2010, the Human Rights Act 1998 and the NHS accessible information standard by not making reasonable adjustments for Ronnie’s disability and by imposing a DNR without discussing it with the patient and his family first.

Kelly and her daughter hope the case will raise awareness of the struggles that deaf people face. There are more than 80,000 people who use BSL as a first language in the UK and they often encounter barriers to accessing information and services.

The family’s story is far from uncommon, and it’s not the first time a hearing relative has had to translate sensitive and distressing information. Kelly herself was admitted to hospital two years ago after a heart attack and fitted with a stent without knowing what was going on because no interpreter was present.

Kate Bushen, service supervisor for the deaf advice team at Citizens Advice Sheffield, who is supporting the family, said: “We hear these horrific stories all the time. We’ve tried to work with the trust to put things in place but nothing’s changed.”

She added: “It is absolutely wrong that a family member should be used without choice and without knowing why.” Covid and the introduction of face masks and an increased reliance on phones and the internet has exacerbated the situation, she added.

Catherine Casserley, a barrister specialising in discrimination and equality, among other areas, who is involved in the Kelly case, agreed: “Access to information for disabled people across the board is, in my view, pretty poor and if you are deaf it’s incredibly poor … If you’re a BSL user, then getting access to timely, accurate information is incredibly difficult, particularly with Covid when things have been changing rapidly.”

 

The Observer has been made aware of other cases where deaf people have faced barriers to accessing services, with sometimes drastic consequences. For example, one pregnant women needed a BSL interpreter at her labour but the hospital refused to arrange one, leading her to become stressed and depressed about not having any communication support and a deaf man was given medication by his doctor but didn’t know what it was because no effort was made to explain it to him. He sought help from the deaf advice team, who looked up the medication and found out it was for a chronic condition before referring him back to the GP. Several weeks later, he texted the team from hospital saying his condition had worsened and that he felt so alone because he had no way of communicating.

Chris Fry, a specialist equality lawyer at Fry Law, is leading legal challenges against the government – on behalf of campaigner Katherine Rowley, whose first language is BSL – over its refusal to provide a BSL interpreter in daily Covid briefings in England.

He said: “We’re 26 years since the Disability Discrimination Act and 11 years since the Equality Act. The whole purpose was to embed consideration of reasonable adjustments in the context of decision-making within government and public services, and it’s just not happened. When we’ve been tested, we’ve been found well lacking and that’s super-disappointing.”

What Is Motherhood With A Disability?

March 8, 2021

Life Of An Ambitious Turtle

Disclaimer: This post is kindly sponsored by The Flower Shops in celebration of Mothers from all diverse backgrounds this Mothers Day 2021.

Being a powerchair user with a little one my lap and another holding my left hand as I maneuverer the controller with my right, sparks a lot of attention from strangers. I’m fully accustomed to stares and thankful thus far my girls have never stopped in their tracks because of someone else’s curiosity of the way I operate. That’s how it should be! Stares after all are just that, curiosity. They aren’t always filled with stigma or negative assumptions, more often than not staring is just someone’s way of processing new information, something out the ordinary and many don’t have the confidence to ask someone different the questions that are flowing through their mind.

From pregnancy my priorities were quite different. While other Mums surfed Pinterest to create…

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Mozzeria- Pizza In ASL

March 8, 2021

Covid has shuttered restaurants across the US. Despite the pandemic, Washington, DC’s Mozzeria opened its doors in September 2020.

With a staff of 12 employees – all deaf or hard-of-hearing – the pizzeria aims not only to serve up great food, but also to improve employment opportunities for the deaf community.

Manchester Jewish Boy’s Care Home Proposal Breached Human Rights

March 8, 2021

A disabled Jewish teenager’s human rights were breached when he was offered respite care at a non-Jewish residential home, a judge has ruled.

The boy lives in an orthodox Haredi Jewish community and was offered the placement by Manchester City Council.

The judge said there would be “significant interference” with his religious freedom and ruled the move “unlawful”.

The teenager’s family argued he should have been sent to a place in London.

Manchester City Council has been asked to comment by the BBC.

Judge Stephen Davies heard how the plan would have seen the boy spend 12 weeks at the local home, including Sabbath and Passover.

The teenager’s family had hoped he would be placed in a more appropriate orthodox Jewish residential home in the capital, which would have allowed him to continue following his religious practices, the Local Democracy Reporting Service said.

The council prepared a care plan which would allow him to “manifest his faith as far as was considered practicable”, the High Court hearing was told.

‘Significant restrictions’

The court heard solicitors had said the family “would likely reach breaking point” unless longer respite care could be given at a culturally appropriate home.

The council had not objected to the London placement on cost grounds but felt it would have meant limited contact with his family.

This “could prejudice his chance of staying with his family long term”, the court heard.

The local authority suggested that a kosher diet would be provided for the boy as part of the placement.

But the Manchester home did not allow a mashgiach, an adviser who ensures food is produced to kosher requirements, to supervise every meal – only Sabbath meals on Friday and Saturday.

The council claimed it would be “unsettling” for other children but Judge Davies said there was no “evidence” for that.

In his judgement he said: “It is plain that there would be significant interference with A’s religious freedom and his family and private life.

“It cannot be necessary for the protection of A’s health or that of his family that he must attend [the Manchester home] and suffer these significant restrictions, when there are alternatives – such as his attending [the London home] instead or through the provision of support staff at home.”

Family Of Man Who Starved To Death After Benefits Cut Lose Case Against DWP

March 8, 2021

The family of a seriously mentally ill man who starved to death after months of isolation in his flat after his benefits were stopped are considering an appeal after losing a high court case against the Department for Work and Pensions (DWP).

Errol Graham, a 57-year-old grandfather, weighed just 28kg when he was found dead at home by bailiffs sent to evict him in June 2018, eight months after all his benefits were stopped because of his failure to attend a fit for work assessment.

An inquest in 2019 found that DWP and NHS staff had missed opportunities to save Graham, and the coroner concluded that “the safety net that should surround vulnerable people like Errol in our society had holes within it.”

Lawyers acting for his family brought a case last year to try to force changes to the DWP’s safeguarding process, arguing that he would still be alive if officials had checked properly on his health and wellbeing before withdrawing his benefits.

The family argued at a judicial review hearing in January that DWP guidance fell short because it failed to impose a duty of care on decision-makers to investigate when mentally ill claimants did not engage with the benefits system. The DWP’s policy placed an unfair burden on vulnerable claimants to prove that they had good cause when they did not attend meetings with DWP officials.

DWP officials made two visits to Graham’s home in 2017, and a handful of attempts to communicate with him by phone, but failed to make contact with him before cutting off his benefits, which were his sole source of income.

On Thursday a judge ruled that the DWP guidance was lawful and that officials had acted reasonably in Graham’s case. Mr Justice Bourne said neither the law nor DWP policy at the time “mandated any further specific steps to be taken in that situation”.

He added: “Despite the tragic circumstances of this case … the claimant falls well short of establishing that the defendant failed to comply with” its duty to make reasonable inquiries into all relevant matters.

The family’s lawyer, Tessa Gregory, of the solicitors Leigh Day, said:“We are deeply disappointed by the judgment, which fails to ensure the DWP takes simple steps to protect the lives of vulnerable benefit claimants. We are considering an appeal and Errol’s family will continue to fight for a welfare system that supports rather than endangers lives.”

A DWP spokesperson said: “Our sincere condolences remain with Mr Graham’s family. While we welcome this judgment we continue to work to improve the service that we provide to our most vulnerable claimants.”

After Graham’s family lodged the claim last July, DWP revised its safeguarding policy, introducing guidance last October requiring staff to widen the scope of inquiries to ensure they checked with police, NHS staff or next of kin before stopping benefits.

Mr Justice Bourne said this revision was “in my view a significant improvement to the policy. It should help to prevent tragic outcomes like that of Mr Graham, though I cannot say what if any effect it would have had in his case.”

LETTER TO EDITOR: For Employee Appreciation Day, Revitalise thank hardworking frontline staff 

March 5, 2021

Dear Editor,

With Boris’ announcement of the roadmap out of lockdown, it’s understandable that the British public has breathed a collective sigh of relief that there is a light at the end of the tunnel and we are hurtling towards it. However, it is important that we never forget the incredible efforts of the nation’s frontline workers during some very bleak times. For Employee Appreciation Day (Friday 5th March) I would like to share a message of thanks with your readers.

The charity I work for, Revitalise, usually create great holidays for disabled people and their carers, a vital lifeline to so many unpaid home carers and their disabled family members. However, during lockdown, our respite centres have adapted to provide emergency respite care for people who are worried about whether their care support can continue, and we have also been supporting the NHS by accepting hospital patients.

Our frontline staff, including nursing and care teams, have continued to work diligently throughout lockdown, providing much-needed care to vulnerable people at our centres, and showing kindness and support and an ear to listen whenever they are needed. We have heard fantastic comments from guests, who have been incredibly grateful for the care and attention that our teams have shown them.

One Revitalise guest, Leon, said:

“Revitalise has reduced my stress levels from 100 to 20. If it wasn’t for Sandpipers, I don’t know what I would do. I just can’t thank the staff and Revitalise enough. You guys pick me up and make me feel better again.”

So I’d like to take this opportunity to thank our wonderful staff – because if you can’t say it on Employee Appreciation Day, when can you say it? Thank you for all of your efforts and the lengths you go to, to make our guests feel happy and cared for.

Revitalise are still welcoming disabled people and carers to Revitalise Sandpipers in Merseyside, for those that have not been able to access a respite break for nearly a year due to the pandemic. We have funding available and can also pr

Devon Prosser, Revitalise
www.revitalise.org.uk  

 

ovide transport across the country. Anyone who feels they could benefit from our support, need only ask.

Places I’ve Taken My Body

March 4, 2021

The autumn I was 19, I entered my college dining hall in California just in time to overhear a boy telling a table of mutual acquaintances that he thought I was very nice, but he felt terribly sorry for me because I was going to die a virgin. This was already impossible, but in that moment all that mattered was the blunt force of the boy’s certainty. He hadn’t said he could never … or “She might be pretty, but” … or “Can she even have sex?” or even “I’d never fuck a cripple” – all sentences I’d heard or overheard by then. What he had done was, firmly, with some weird, wrong breed of kindness in his voice, drawn a border between my body and the country of desire.

It didn’t matter that, by then, I’d already done my share of heated fumbling in narrow dorm-room beds; that more than one person had already looked at me and said: “I’m in love with you,” and I had said it back. It didn’t matter that I’d boldly kissed a boy on his back porch in sixth grade, surprising him so much that the BB gun he was holding went off, sending a squadron of brown squirrels skittering up into the trees. Most of me was certain that the boy in the dining hall was right in all the ways that really mattered. He knew I’d never be the kind of woman anyone could really want, and I knew that even my body’s own wanting was suspect and tainted by flaw. My body was a country of error and pain. It was a doctor’s best attempt, a thing to manage and make up for. It was a place to leave if I was hunting goodness, happiness or release.


I have the strongest startle reflex in the world. Call my name in the quiet, make a loud noise, introduce something sudden into my field of vision, and I’ll jump like there’s been a clap of thunder every time. It’s worst, though, if you touch me when I’m not expecting it. I start the way a wild animal does. For years I thought only the bad wiring in my brain was to blame, the same warped signals that throw off my balance and make my muscles tighten, keeping me permanently on tenterhooks. Then I met Susannah, whose first memories are also of a gas mask and a surgeon’s hands, of being picked up, held down, put under. She, too, jumps at the smallest surprise, the slightest unanticipated touch. Now I think that feral reflex also arises from something in that early trauma: all those years of being touched without permission, having your body talked about over your head, being forced under sedation, made to leave your body and come back to a version that hurts more but is supposedly better – the blank stretch of time when something happened you can’t name. I think it matters that the first touch I remember is someone readying to cut me open, that when I woke up I was crying, and there was a sutured wound.


For the better part of my childhood, I was part of a study on gait development in children with cerebral palsy. At least once a year – and sometimes more frequently if I’d recently had surgery – I spent an afternoon in a research lab, walking up and down a narrow strip of carpet, with sensors and wires attached to my body so doctors could chart the way I moved. The digital sensors composed a computer model of my staggering shape, each one a little point of light, and when I peeled them off they left behind burning red squares like perfect ­territories. But the doctors also filmed the whole thing on a video camera mounted on a tripod, and gave us the raw footage to take home. The early films are cute; I’m curly haired and chatty. The bathing suit I wear so that my legs and arms are bare is always either a little too small or a little too big, a hand-me-down from my older sister. I trundle happily down the carpet. As I get older, though, the tapes get more complicated. By the time I get to footage where I look anything like myself, I can’t bear to watch. I’m a teenage girl in bike shorts or a bathing suit, being watched by a collection of men, walking what’s essentially a runway like some kind of wounded animal.

Even today, I can’t quite tell: do I hope that when they looked at me back then, mostly undressed, they saw only a crop of defects that needed fixing, a collection of their best repairs? Or do I hope that one of them – maybe the redhead, not yet 30 – felt some small press of desire, knew I was a girl on the edge of womanhood and not a half-lame horse or subject #53? I know I hated being watched. I also know it never occurred to me that anyone watching would see something worth wanting.

They took those videos throughout most of my adolescence. Do you know I still can’t stand to watch myself walk? I put my eyes on the floor when I pass department-store mirrors or reflective glass. I catch a glimpse of myself and my stomach turns. When I asked the first man I loved about the way I moved, he said: “It’s nothing. It doesn’t matter.” He meant it as a comfort, but I thought: “You’re wrong. It makes me what I am.”


Chronic pain makes you good at abandoning yourself. It teaches you to ignore your body until it insists on being noticed, until your joints ache too badly to stand, until something buckles, until you fall and then you’re bleeding hard enough to ruin your clothes. There’s a certain low thrum of hurt I don’t notice; it’s just the frequency at the bottom of everything. A good day is one where I hardly think about my body, where I adjust for its flaws by instinct, where there isn’t any sudden spike in that low pulse of pain.

On a good day, my body doesn’t embarrass me. It does what I ask it, lets me walk short distances and do my job. I don’t notice people staring, don’t trip on my way in to teach a class, sending 35 student papers flying everywhere. I don’t have to pause at a threshold and ask a stranger to help me lift my wheelchair up and through a door. No one I don’t really know needs to put their hands on me. No one in the grocery store asks: “What happened, sweetie? You’re so pretty to be in a wheelchair!” On a good day, my body pulls hard at the hem of my dress, and I hiss back: “You don’t exist,” and it goes somewhere else, or I do.Advertisement

In bed, a man pauses, puts a wide, gentle hand on my face and asks: “Honey, where are you? Come back here.” I want to, and also I don’t.


Just as I hit adolescence, my body abruptly began to break down. I grew, and so did my physical instability. My tendons tightened, and my pain increased. The ­doctors scheduled another set of medical procedures: a surgery, a summer in a set of full-leg plaster casts and then a pair of heavy, bulky metal braces. Just as I began to learn I could feel sexual desire, I was splintered and in pain again, and the fact of it demanded most of my attention. My earliest experiences with lust feel shrunken by the trauma, vague and distanced, as if I watched through a scratched viewfinder while they happened to someone else. I can’t identify them for you except as strange, dark shapes at an unreachable horizon line.

During those years I had to wear parachute pants – specially made by a tailor who regularly asked my mother to remind her what was wrong with me – and giant sneakers to accommodate the braces. Besides all that, I had the usual adolescent problems. I hadn’t learned that you really just shouldn’t brush curly hair, or that if you have hips and spend most of your time sitting or bent over, low-rise jeans are a terrible idea. Not only was I far from resembling the kind of girl I could imagine anyone finding desirable, I was so occupied with pain and with being a patient, perpetually hamstrung between taken-apart and put-back-together, that it would take me years to really look at myself and realise I was also a person. A woman. That there was a whole other way I could want to be touched.

 

I belonged to an adaptive skiing association and spent most of the time I wasn’t in the hospital or physical therapy learning to hurl myself down snow-covered mountains with men who’d been paralysed in car wrecks. But I didn’t know a single adult woman with a disability really comparable to mine. Nowhere on television, or in any magazine, did I see any portrayals of disabled women as sexual and desirable (let alone as partners or as parents), and most of the solace that the early-2000s internet had to offer was in the form of assurances that I might one day be the object of some very particular fetish. It matters that when any adult spoke to me about my body, they did so in purely utilitarian terms, said that I should want the best range of motion, the least pain, the highest level of mobility, so that I could one day buy groceries, live independently, hold a job. Of course, nobody warned: you’ll want your hamstrings to be loose enough that it doesn’t hurt when your muscles tense before you have an orgasm. They also didn’t say: we want to do all this to you so that one day your body can be a thing that brings you pleasure, a thing that you don’t hate.Advertisement

The truth is, my first real flushes of lust happened when my own body was a dangerous thing, one I couldn’t trust not to fall to pieces or to lunge at the rest of me with its teeth bared, out for blood. So much of my somatic experience was agonising and frightening. I had no idea what my body would look, move or feel like five years down the line. Desire wasn’t entirely crowded out by pain, but I distrusted it the same way I did everything that felt born in my body, as if it were an instant away from morphing into suffering, waiting only until I attended to it to become a thing that hurt me. I playacted at desire often – mimicking the adolescents around me when they traded gossip about crushes, had first kisses, held hands furtively underneath their desks in social-studies class – but I couldn’t afford to get to know its real contours in my life, to attend to my own sensations, or to believe in a future with real space for that kind of pleasure or intimacy, that kind of love. To survive, I had to stay unfamiliar to myself: neutralised, at arm’s length. Sometimes, I think, all these years later, I’m still hunting the part of myself I exiled.

When I was newly 17, one of my closest friends put her head in my lap, said: “You’re so gorgeous,” and then leaned up and kissed me. I would spend the better part of the next year alternately pushing her away and pulling her close, trying to figure out whether I wanted her, too, or only the plain, unapologetic fact of her desire for me. Her gentleness, her confidence in her own body and its hunger, the fact that when she watched me move, I felt like a painting come to life and not a patient or a busted wind-up toy. A decade later, I still feel guilty for all the secretive back-and-forth I put her through because I was unwilling to be open about our romantic relationship, and the answer to the question of my own desire still feels fraught and muddy.

A handful of years after that, I was in a coffee shop with a man I half-thought I’d marry, in a youthful, abstract way, and someone in line assumed he was my brother, though we couldn’t have looked less alike. When we corrected her, she looked over my head at him and said, gently and admiringly: “She’s so lucky to have found you.” He bit his tongue when I squeezed his hand. I didn’t want to think about it any more. We turned away.

We started dating after he attended a reading I gave. When it was over, he came up and kissed my cheek, said: “That was so incredible that I forgot to breathe while you were talking.” Then he turned on his heel and walked away. I rolled my eyes, but couldn’t get him out of my head. The way I moved was nothing. He was proof it didn’t matter.

At a taffy shop on the boardwalk in San Francisco, the weekend we first say “I love you”, a middle-aged man is pushing a woman, clearly his wife, in a wheelchair. They are laughing and his head is bent so that their faces are close together as he walks, intimate and tender. We bump into one another in the aisle and pause – two couples exchanging smiles – while we make room for her wheelchair to get past mine. They walk on, and then we kiss, fierce and happy there. We’re young, and don’t know anything. We both think “maybe”.

Later, we’re in Florida at the beach, and I’ve been stiff and hurting for weeks from a summer of travel. In the bathroom, while we’re changing into bathing suits, he looks me up and down. I’m prepared for him to try something – to kiss me – and I’m prepared to put him off, we don’t have time; we have to meet my family by the water. Instead, he asks me tenderly: “Do you want help clipping your toenails, baby? They’re getting kind of long.” That night, in bed, I roll away when he reaches for me. My body is no country for desire.

A couple of years later still, another man – charming, boy-next-door-beautiful and quarterback confident – has started spending evenings in my bed, or with me pinned to his couch. He tells me I’m sexy, asks to read what I’m writing, then asks quiet questions about poetry and movies that I love. But he won’t be seen dating me in public. When I tell him I’m more than happy to be fooling around, but that I won’t sleep with somebody I hardly know, he puts all his weight on top of me, says: “Oh, if I wanted to have sex with you, you’d know.” Then flips me over. Pushes my head down hard enough that it hurts. I think: he’s embarrassed to be seen with me. He gets off on how fragile I am. I’m too old to put up with this. But I let him. I let it go on for weeks and weeks like that before I stop returning his late-night texts.

I want him to want me, and though I can’t quite admit it to myself, I am also a little afraid. Always, I’m aware that I’m particularly vulnerable: I couldn’t run if you came at me. I’d fall to the ground if you touched me even slightly roughly. I will always start at an unexpected hand.


But because some of you are wondering (I see you ­leering at me, stranger at the bank. I see you, terrible internet date); because we live in a world that often assumes disabled people are sexless or infantile; because I wish I had heard anyone who looked or moved like me say it when I was 14, I want to be very clear: I can, in fact, have sex. I am a woman who wants in ways that are both abstract and concrete. I have turned down advances from people I wasn’t attracted to, and said yes to a few advances I’m sorry about now, and more that have been lovely, surprising and good. I’ve had a date who didn’t realise I was in a wheelchair turn and walk out of a restaurant when he saw me, and I’ve watched the light behind men’s eyes turn from desire to curiosity to something else when they realise something’s wrong with me. I’ve been hit on while on barstools by people who disappear once they’ve watched me get up and shuffle slowly to the bathroom. I’ve used that trick to my advantage. I’ve spent a summer weekend taking baths and eating overripe peaches in a seedy motel with someone I loved, and another getting lusty-whiskey-drunk with someone I didn’t, but whom I was still perfectly happy to have unbutton my shirt. The explicit details I’ll keep to myself, except to say that my familiarity with how to jump-rope the line between pleasure and pain has done me some favours. If you’re listening, younger self, some of what you’re learning will, I swear, eventually have uses no one’s naming for you, uses that no one orbiting around you can locate, name or even imagine.


In another kind of story, I would leave it there. Or I would say that I’ve arrived at a reconciled point, that no part of me ever still believes that the boy in the dining hall, who was certain I would die a virgin, hit on some real truth about the ways my body is ­defective and repellent; that, now, I can watch myself move without feeling some small wave of shame; that I’ve completely stopped abandoning my body out of instinct, or habit, or what feels like necessity, in moments when it should bring me pleasure and intimacy and joy. I’d have fully worked out how to be with a partner who I know really sees my body, its contours, its scars and its pain, who I can let give me the kinds of help I need and still trust to see me as sexual and desirable. But that isn’t where I find myself. I don’t know exactly where the reconciled point is, or even what it looks like. Instead, things just get more complicated. I really want children, and in the past few years that prospect has collided with questions of intimacy and desire. I worry about finding a partner truly willing to parent with me in the ways I know my disability will necessitate, and to sign up for the medical uncertainties I know are around the bend in my own life. I worry about the toll pregnancy might take on my body, and about being physically capable of being a good parent once my children are born. I worry that my clock is ­ticking faster than most people’s, my body wearing down and wearing out. And, in the hardest moments, that whatever small kind of beauty and desirability I might, in fact, possess is wearing away with it. I’m still surprised by my own limits, still frustrated and exhausted by pain. Sometimes I still feel suspicious of all my body’s sensations, the good ones tangled too tightly with the bad. But not all moments are the hardest ones, and maybe the point is simply this: that I am still alive, still in the business of heading somewhere, still a woman who can stumble, hurt and want, and – yes – be wanted. That there is no perfect reconciliation, only the way I hold it all suspended: wonderful, and hugely difficult and true.

Places I’ve Taken My Body by Molly McCully Brown will be published by Faber on 4 March. To order a copy, go to the Guardian Bookshop.

Yorkshire Accents Wanted To Replace ‘Generic’ Speech Aid Voice

March 4, 2021

A man whose speech aid makes him sound “American” is looking for volunteers to help him speak in his native Yorkshire accent.

Richie Cottingham, who has cerebral palsy, says his speaking aid’s generic voice does not represent his identity.

“I want to sound like my family and friends,” he said.

The 26-year-old, who lives near Howden, East Yorkshire, wants to blend recordings of two local men to create a new voice.

“When I’m with my friends our voices sound the same because we all use the same communication aids,” Mr Cottingham said.

“I would love to have my own voice.

“I dislike my voice because it sounds like I’m American.

Being able to talk in his own voice would be “awesome”, he said.

Speech and language therapist Jennifer Benson said they hoped to find two men in their early 20s with East Yorkshire accents to help them “create an entirely new [voice]” that would be installed on Mr Cottingham’s communication aid.

“Richie has cerebral palsy and has never been able to speak and never had a voice of his own,” she said.

“I feel like having a voice to call his own could be a really, really great thing for Richie.

“I feel that it will give him an enhanced sense of identity due to having that regional accent, which could also give him an enhanced sense of belonging to his own community and his place in the world.”

She said a revamped communication aid using a tailor-made voice for Mr Cottingham would help him to “fully participate in conversations”.

Mr Cottingham said the voice donors “would be helping me a lot”.

“I would be very happy with a new voice,” he added.

Sport And Brain Injury: Parliamentary Inquiry To Be Launched To Investigate Link

March 3, 2021

A parliamentary inquiry into the link between sport and long-term brain injury is being launched on Wednesday.

MPs will consider the links between head trauma and dementia, and how risks can be mitigated.

Last year, Sir Bobby Charlton became the fifth member of England’s 1966 World Cup-winning squad to be diagnosed with dementia.

A number of ex-rugby union internationals are also suing for brain damage.

The Concussion in Sport inquiry, which starts on 9 March, will consider scientific evidence and hear from players and governing bodies.

The inquiry will not consider material involved in ongoing legal proceedings, but will look at potential implications of successful legal action and what impact that could have on sport in the longer term.

Digital, Culture, Media and Sport committee chair Julian Knight said: “We will look particularly at what role national governing bodies should be taking and their responsibilities to understand risks involved for players and what actions might be taken to mitigate them.

“We’re seeing a number of cases involving brain injury in sport likely to reach the doors of our law courts and we will also look at the implications for sport in the longer term of any successful legal claim.”

Culture Secretary Oliver Dowden, who has hosted two recent meetings with players and sports bodies on the issue, and asked them to work together to devise a plan, said he welcomed the inquiry.

A 2019 study showed footballers were three and a half times more likely to die of neurodegenerative disease than age-matched members of the population.

Last month, former Scotland, Manchester United and Leeds United defender Gordon McQueen was diagnosed with vascular dementia.

Former England and West Brom striker Geoff Astle died of the condition in 2002, and his daughter Dawn is working alongside the Professional Footballers’ Association to help shape the way it cares for former players.

Dr Willie Stewart, the neurosurgeon who led research into football’s links with dementia, has warned the issue is “not just for older-era footballers but modern-era footballers as well”.

Last year heading guidelines were altered in England, Northern Ireland and Scotland to encourage coaches not to practise heading at all in training in children up to primary school age.

In the professional game concussion substitutes are being trialled in the Premier League and FA Cup, while a working group is looking at introducing similar guidelines to the ones set out for children to training.

The Football Association is currently supporting two independently led research studies examining former professional players for early signs of neurocognitive degeneration.

England football manager Gareth Southgate is taking part in the ongoing HEADING study, which works with PFA members aged 50-plus and is being conducted by the London School of Hygiene and Tropical Medicine.

 

Blind Boy, 9, Teaches Classmates In Yemen War Zone

March 3, 2021

In the city of Taiz, Yemen, hundreds of children arrive for lessons each day in the ruins of a school near to front-line fighting between the government and Houthi rebels.

Ahmed, a nine-year-old boy who has been blind since birth, steps in to take classes when the teachers can’t make it.

One in every five Yemeni schools is out of use, according to Unicef. But at this one, teachers decided to open it despite the damage, so that education could continue.

Can Bear Ski? By Raymond Antrobus

March 3, 2021

Award-winning poet Raymond Antrobus found out he was deaf when he was six, while illustrator Polly Dunbar’s hearing started to go in her twenties.

Can Bear Ski? is their first picture book for children and follows a little bear as he discovers he is deaf.

Raymond decided to write the story after being a poet in residence at his former primary school and finding the library lacking in books featuring deaf characters.

Now armed with a copy of the new book, Raymond is joined by Polly on a Zoomed trip back to his old school.

It’s snot what you think… Tracey Fulton debuts with an unusually heart-warming tale inspired by her nephew with cerebral palsy.

March 3, 2021

A press release:

 

Jensen and the Giant Snotball is a hilarious and heart-warming children’s picture book which was inspired by author Tracey Fulton’s young nephew’s experience in hospital. “Jensen has cerebral palsy and was admitted to hospital when he unfortunately broke his leg. While in hospital, he contracted pneumonia, and to save his life nurses and physios worked tirelessly to remove mucus from his chest. On one very memorable occasion, shouts of ‘Jensen, that’s the biggest snotball I’ve ever seen!’ sparked inspiration for a children’s book I hope will provide humour and happiness for readers as they follow Jensen and Snotball’s misadventures!”

When Jensen meets Snotball at the hospital the pair head out for a big adventure, past the nurses and out of the hospital, to the shops and off to the park. But Jensen knows he needs to get back quickly, else his mum and sister will be worried. Luckily Snotball is as speedy and he is sticky, and they make it back safe and sound, and just in time.

From their very first day at the hospital together, this giggling pair are the best of friends. Their naughty and fun adventures have only just begun!

Tracey Fulton lives in Durham with her partner, Steve. With four grown up children and a baby grandson, she enjoys family life. Jensen and the Giant Snotball is her debut novel, written to spark young readers’ imaginations.

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Prosthetist Fundraising £300,000 For A Bionic Arm After Cycling Accident

March 2, 2021

Jim Ashworth-Beaumont lost his right arm after he was run over by a 40-tonne truck whilst out cycling last year.

Prior to the accident, he spent 20 years working as a prosthetist and orthotist for the NHS.

He is trying to raise £300,000 for a new bionic arm, which he hopes will allow him to go back to work.

Jim spoke to BBC Breakfast’s Tim Muffett about the surgery, which would be one of the first to take place in the UK.

Covid: People With Learning Disabilities ‘Left Behind’ By Needle Vaccine

March 2, 2021

People with learning disabilities have been “left behind” while the Covid-19 vaccine can only be delivered by injection, their families say.

One parent said their son, who is clinically extremely vulnerable, would “flip completely” if approached by someone with a needle.

A government-funded trial for an inhaled vaccine is not expected to be completed until August.

Families say it means loved ones remain at high-risk of dying from Covid.

People with learning disabilities are up to six times more likely to die from Covid-19, a report from Public Health England (PHE) shows.

Everyone on the GP learning disability register will be invited for vaccination as part of priority group six, PHE confirmed.

But some parents say the jab remains an unviable option for their children.

Sue Keegan, from Chudleigh Knighton in Devon, is a single carer for her 30-year-old son Sam.

He has Down’s Syndrome and autism, and an extreme phobia of hospitals, doctors, and needles.

While Sam was able to receive his vaccines as a baby, his sensory needs have stopped him from doing so as an adult.

“He can’t cope with people touching him,” said Ms Keegan.

“He’s a very strong young man, and he will attack. He would just flip completely.”

Ms Keegan said it meant the Covid vaccine, in its current format, was “totally” out of the question for her son.

“The only way I can protect him is if we don’t go anywhere,” she said.

Twenty-two-year-old Ben, who has Down’s syndrome and autism, has been shielding with his mother, Clare in Torbay, Devon since March 2020.

“In the last year, I’ve probably left the house no more than 10 times,” Clare said.

While the vaccine represented a glimmer of hope for many people, it was less straightforward for Ben.

“He’s very anxious as part of his condition,” Clare said.

“He doesn’t totally understand what injections are – for him it would be someone coming towards him with something that looks as though it will hurt. It’s not safe.”

While Ben cannot be given the vaccine, Clare and her family will continue to shield.

“I feel very much, as always, that we get left behind in all of this sort of stuff,” she said.

“Going forward, our life can only get back to what it was through the development of a nasal vaccine. And there’s going to be lots of people in the same position.

“He might never get vaccinated, but there’s a chink of hope that he might.”

Sue Fear opted to give her 25-year-old son a small dose of Diazepam, as advised by a specialist GP, to ensure he could have the vaccine.

Ms Fear, a single mother from Torbay in Devon, said she had “exhausted” all other options to ensure Charlie, who has Down’s syndrome and autism, could be protected.

“It’s a question of trying to weigh up whether the person gets Covid, and dies, or they have this vaccination under extreme circumstances.

“I don’t feel comfortable with that, but that’s what was offered to me.”

Ms Fear said she remained nervous about giving Charlie the anti-anxiety medicine for his second dose.

“Even now talking about it my heart rate is going up – the stress levels for parents are really high.”

Ms Fear said it was a relief to know her son was vaccinated but an alternative format “would really help a lot of people”.

“Even if there was a slight possibility of a liquid vaccination, that would be amazing,” she said.

Dan Scorer, head of policy at the learning disability charity Mencap, said a needle injection was a “major barrier” for some people with a learning disability.

He said while many barriers could be resolved by making reasonable adjustments at vaccination centres: “The development of a nasal vaccine is also a crucial step forwards in battling the pandemic, widening access to the vaccine, and keeping a group of people who are highly at risk safe.”

A Department of Health and Social Care spokesman said: “We know this is a worrying period for people across the country, and everyone using our health and care system deserves the best quality of care.

“The Department for Health and Social Care is supporting an Imperial College London trial to investigate inhaled Covid-19 vaccines which is due to report in August this year.

“As we turn the tables on this virus it remains vital that people who are clinically extremely vulnerable continue to closely follow the government advice on reducing their risk of infection.”

Brendan Lawlor: Irishman Relishing Opportunity To Raise Disability Golf’s Profile

March 2, 2021

“I feel very lucky and privileged it’s me. We’re creating these chances for people with different types of disability.”

Brendan Lawlor says he will never stop “fighting”.

He has been doing it from the moment he was born with a hole in his heart as well as the rare limb-limiting condition Ellis-van Creveld Syndrome which means the 23-year-old stands at 4ft 11in.

The Dundalk man became the first disabled golfer to compete on the European Tour when he teed up in the UK Championship at the Belfry last August.

Rounds of 84 and 82 left Lawlor feeling he had not done himself justice on the playing front but the experience still represented a week that “changed my life”.

“I had to get the hole in my heart repaired at six weeks old,” Lawlor told BBC Radio Ulster’s Sportsound.

“It was meant to happen at three months old but I wouldn’t have survived any longer if they hadn’t operated that day.

“The doctors said I would take six months to recover but I was out of hospital in 10 days so that was an indication of my fighter’s attitude.”

Lawlor’s love of golf fostered by grandfather

His zeal for golf was fostered by his beloved grandfather, who resolved to teach the young Lawlor the game despite his disability.

“He sort of had the fantasy of one of his grandchildren picking up golf clubs and continuing it on,” said Lawlor.

“I was in the garden for many, many days with him practising and honing my short game and that’s definitely where the passion came from.”

By his mid-teens, Lawlor was one of the best juvenile players at Dundalk Golf Club and he went on to represent it in the Emerald Isle’s premier club competition, the Irish Senior Cup.

Opponents taking on Lawlor in those days were often in for a rude awakening.

“You’d go to events and people would be saying that it was going to be an easy match because I looked different.

“Then they would get a big shock when I would beat them on the 14th or 15th [hole]. It sort of took off from there. I was always a confident guy and had belief in my own ability.”

‘They treat me like Tyrrell Hatton’

It was only four years ago that Lawlor realised there were potential avenues in disability golf which have since gone on to transform his life.

On the day he spoke to BBC Radio Ulster, Lawlor had been been one of the main speakers at a news conference to announce details of this year’s World Invitational mixed men’s and women’s event, which will take place in Northern Ireland in July.

Other speakers included European Tour chief executive Keith Pelley and pop star and golf fanatic Niall Horan, who signed up Lawlor in 2019 to his Modest Golf management agency. Its clients include world number five Tyrrell Hatton and Irish LPGA player Leona Maguire.

“I’ve been a part of the stable two years now after signing for them as a professional. They’ve never treated me any differently. They’ve treated me like Tyrrell Hatton and Leona Maguire….just like a normal person,” said Lawlor.

“I’ve really enjoyed the journey. It’s like a wee family we have.”

Signed deal with clubs manufacturer

Lawlor’s link with Modest has also recently seen him sign a deal with one of the leading manufacturers. Adjustments have been made to his club specifications which he believes will improve his game further.

“I have just got a whole new knowledge of where I can go with my clubs. I still use standard-length clubs because I don’t want to give away any distance, but I have them three degrees bent so my clubface is square to the target,” he said.

“Signing with those guys this year was a massive bonus and improved my game massively. I was never really into that side of it before.”

As it stands, Lawlor is fourth in the world disabled golf rankings and his big dream is to help in the drive to set up a professional circuit for disabled players.

“I want to get more people into the game and there’s also talk of a European Tour Disabled Golf Association to run alongside the European Tour, which would enable disabled golfers to earn a living from the game,” added Lawlor, who hopes the sport will be in the Paralympics by the time the 2028 Games take place in Los Angeles.

“I’m trying to create a path for everyone to get those chances.

“It has to start with someone. I feel very lucky and privileged it’s me. We’re creating these chances for people with different types of disability.”

Marguerita Moorcroft Obituary

March 2, 2021

My friend Marguerita Moorcroft, who has died aged 96 of Covid, became the first female assistant official receiver, working in the Insolvency Service, at a time when the higher echelons of the civil service were something of an old boys’ club.

Marguerita was born in Southport, Lancashire, to Annie Moorcroft; she did not know her father. After contracting polio when she was three, she was left at an orphanage in Liverpool. Her childhood there was almost Dickensian. Aged 13 she was forced to leave school and go into service as a maid but found the role difficult due to disabilities caused by the polio, and was ejected from the house.

She lived briefly in a room with an older girl and her siblings who had also been at the children’s home, before being taken in by a church member in Harrogate, and working again as a maid. Just short of her 17th birthday, she joined the Women’s Auxiliary Air Force, having lied about her age.

When she left the WAAF, her intellectual potential was spotted by an ex-Oxbridge don she had been introduced to in Harrogate. He gave Marguerita free lessons in Latin and maths, and then she moved to London in 1950 to complete her education.

Lodging at the Christian Alliance of Women and Girls hostel in Millbank, Marguerita worked as a post office clerk while attending night school. In 1952, she gained a place at the Royal Free Medical School – a childhood ambition – but the high fees meant she was unable to complete the training. It was there that she met my mother, Lilianna; they became lifelong friends.

When the hostel closed in1962, Marguerita moved to All Saints House in central London. Following a string of menial jobs, she trained to be a chartered accountant, passing with top marks and getting a job as an articled clerk in 1955. However, this was followed by several spells in hospital. She then spent four years working as an accountant at the Royal National Orthopaedic hospital, before joining the Board of Trade in 1965, rising to become the first female assistant official receiver, dealing with many cases in the high court, and encountering much sexism and elitism.

All Saints House closed in 2002, and Marguerita spent a brief, unhappy spell in a retirement home in Oxford run by nuns, before returning to London for her final move to a flat in East Finchley.

Marguerita embraced life, going on adventurous holidays; learning Russian, Mandarin, Japanese and carpentry; and, in 1969, gaining her private pilot’s licence. On retirement she volunteered at the Mary Ward Centre for adult education, became a member of the Pipers’ Guild and raised funds for the Helen House children’s hospice.

She maintained wonderful friendships and always helped people who were disadvantaged, never forgetting her own difficult start in life.

‘It’s A Basic Human Right’: The Fight For Adaptive Fashion

March 2, 2021

From constrictive corsetry to blistering 6in heels, the oft-quoted line: “You have to suffer for fashion,” has afflicted humanity for centuries (however much it seems alien to our current wardrobe of Zoom-friendly sweatpants). But what happens when even a simple garment is disabling? Or when suffering for fashion is not a stylistic choice, but an everyday reality that can affect someone’s quality of life?

For many disabled people, off-the-peg clothes are inaccessible and cause discomfort, from fiddly buttons to seams that chafe in a wheelchair. “Clothing plays an important part in living well,” says Monika Dugar, the co-founder of Reset with Usha Dugar Baid, an adaptivewear brand that launched at a virtual event during London fashion week. “Due to restricted mobility, clothing choices can impact whether people with disabilities can operate functionally.”

Inspired by Dugar’s father, who has Parkinson’s disease, the first Reset collection fuses op-art prints with solution-based design; think jackets with Velcro closures and a polo neck with easy-entry shoulder fastenings. “Every garment has to make a statement; a statement where design and functionality merge,” says Dugar. “We go through multiple stages of prototypes, testing and feedback.”

Thinking about fashion in this way requires designers to become engineers, utilising problem-solving, innovation and empathy. Although she studied at the London College of Fashion and completed internships at Paul Smith and Mary Katrantzou, Dugar’s foray into adaptivewear is self-taught. “An important part of the process is failing – and recognising this – to bring the best solution,” she says. “Designing for people with disabilities isn’t a trend, it’s a necessity.”

The launch of Reset reflects a growing demand for disability-friendly fashion. With the adaptive clothing market forecast to be worth nearly £280bn by 2026, it is unsurprising that a handful of brands have their sights on this overlooked consumer group.

This month, Nike released its first hands-free trainer. Three years in the making, the Nike Go FlyEase aims to revolutionise footwear for people who can’t put on shoes independently. The design features a “bi-stable hinge”, which allows the wearer to slip in, step down and get moving in one action, requiring no bending or unfastening.

In addition to the established brands, there are several startups in this space. Take Unhidden Clothing, a label offering minimalist wardrobe staples that accommodate colostomy bags, with the option to request further alterations at checkout.

Then there is Megami, which is redefining post-mastectomy lingerie with its sultry bras that feature discreet pockets for prostheses. Another is I Am Denim, which designs stretchy jeans for wheelchair users and people undergoing abdominal surgery; a hidden Lycra panel sewn into the waist prevents discomfort when seated.Advertisement

Despite encouraging statistics and inclusive product launches, adaptivewear remains a niche market and is struggling to reach consumers. A recent New York Times investigation exposed how algorithms routinely blocks adaptive fashion adverts from platforms such as Facebook and Instagram. Mostly, it comes down to product misidentification: items promoting medical devices are automatically rejected for policy violation. Here, technology is an impediment for the adaptivewear market, but used correctly it offers vast potential.

Advances in 3D printing will revolutionise fashion for disabled consumers. Whether it is a specific leg length, to accommodate amputations, or easy-access fastenings, individual features can be edited on to printed garments. “It allows the customer to tailor the tightest of details. Areas of ‘bespoke editions’ can be saved as a file that’s used on various items, not just the one look,” says Leanne Elliott Young, a co-founder of the Institute of Digital Fashion. “This means a lot for those who don’t fit into fashion’s old-school structures.”

Other innovations include fuseproject’s Seismic powered suit, a wearable device that augments the body with cyborg-like abilities. The bodysuit contains electric muscle power to improve strength and mobility. The Dutch designer Pauline van Dongen, meanwhile, has prototyped smart knitwear. Her Vigour cardigan monitors the wearer’s biometrics through sensors in the yarn to aid physiotherapy treatment. There is also a biotech company pioneering fabric that releases antioxidants and nutrients into the skin.

With expensive price tags, long waiting lists and unavailability in developing countries, adaptivewear will unintentionally increase inequality among disabled people. Governed by commercial incentives, companies put profit-making over providing unfettered access. It raises the question: should consumerism be attached to products that address medical needs?

“Adaptive design is a basic human right,” says Maura Horton, the founder of the e-commerce site Juniper, which is launching in the UK this year. Aiming to be the Asos of disability-friendly clothing, Juniper will make adaptivewear more accessible than ever. “If we are doing our jobs correctly, there will not be an up-charge for adaptive design,” says Horton. “More designers exerting the space will help form a competitive landscape.”

As fashion faces a moment of reckoning, adaptivewear sets a precedent for diversity. From the design process to the models and end customers, it is a world where inclusion can no longer be an afterthought.

 

DWP Has Paid Out £32 Million To Claimants So Far For PIP Errors

March 1, 2021

With many thanks to Benefits And Work.

 

The DWP has paid out £32 million so far to PIP claimants who lost out because of legal errors by the department, according to an update released this week.

The DWP is currently trawling through millions of claims looking for people owed money after it lost two landmark legal cases and had to change its guidance to decision makers.

In a decision known as MH, it was found that the DWP had been misapplying the law in relation to psychological distress and following the route of a journey.

In RJ, the DWP was found to have got the law wrong in relation to safety and supervision.

Since June 2018, the DWP has been looking for claimants who are entitled to back-payments because their award was calculated wrongly due to these errors of law.

The review exercise was paused from the end of March 2020 because of coronavirus, but began again in October 2020.

The latest figures show that:

  • around 890,000 cases have been cleared against the MH decision
  • around 990,000 cases have been cleared against the RJ decision

Approximately 6,600 payments have been made; of which:

  • around 3,600 arrears payments have been made from the application of the MH decision alone
  • around 3,000 arrears payments have been made from the application of the RJ decision alone
  • less than 100 arrears payments have been made from the application of both decisions simultaneously

The total amount of arrears payments the department has paid out is around £32million. Of this:

  • £18million has been paid from the application of the MH decision alone
  • £14million has been paid from the application of the RJ decision alone
  • less than £1 million has been paid from the application of both decisions

You can read the full report: PIP administrative exercise: progress on cases cleared, at 17 January 2021.

Integrated PIP/ESA/UC Assessment Trials To Resume

March 1, 2021

With many thanks to Benefits And Work.

 

The DWP is to resume trials of an integrated assessment for PIP/ESA/UC in April, Justin Tomlinson, minister for disabled people confirmed this week.

The DWP originally announced plans for an integrated assessment system for PIP and the work capability assessment (WCA) back in March 2019, with a further announcement in March 2020.

The original intention was to “test whether it is beneficial to claimants requiring face-to-face assessments to offer a single assessment for UC and PIP to capture all the information required for both claims in one appointment, reducing the need for claimants of both benefits to attend multiple appointments”.

In other words, the idea was not a single test for both benefits, but a single assessment at which the evidence needed both for PIP and a WCA would be collected.

Two years after that original announcement, it seems that virtually no progress has been made.

According to Tomlinson, the DWP had “started to test a single digital platform in a small number of assessment centres but this was paused due to the impact of COVID-19”.

The work will now go ahead within the Departmental Transformational Area (DTA). This is essentially an area where new processes can be tested on claimants before being rolled-out across the country.

The first DTA is at an undisclosed site in London and will begin in April of this year.

You can read Tomlinson’s full statement here.

The Disabled Influencers Making Their Mark On Social Media

February 26, 2021

“You have to work hard on being your true self, and believe in the brands you promote.”

Words of advice from 32-year-old disabled influencer Tess Daly from Sheffield, who uses her 200,000-plus followers on Instagram to promote her beauty tutorials and advertise beauty brands.

Electric wheelchair-user Tess, who has spinal muscular atrophy (SMA), has worked on social marketing campaigns for the likes of Boohoo and Pretty Little Thing, as well as various make-up brands.

She still cringes at the term “social influencer”, but says that she wishes there were more people like her when she was growing up.

“So many people with disabilities have told me that I’ve given them the confidence, not only to embrace their disability, but to also pursue their own love of make-up,” she says.

Tess is one of a growing number of disabled influencers who work with Martyn Sibley and his digital marketing agency Purple Goat, which he launched at the beginning of lockdown last year.

Martyn, who was also born with SMA, started the agency as part of his mission for a fully inclusive world.

“I believe by helping big businesses make more profit through including disabled consumers via disabled influencers, we’ll get true inclusion quicker,” he says. “With this model it’s a win-win for everyone.”

Purple Goat has worked with more than 75 influencers so far, but Martyn is keen to point out that they’re not a talent agency with people on their books.

“We work for the client and find the right influencer for each campaign,” he explains.

Taking the plunge

Around 14.1 million people in the UK have some sort of disability, and with those sorts of numbers comes serious spending power. According to disability charity Scope, the so-called “purple pound” is worth approximately £273bn every year.

But while disabled people make up around 22% of the UK population, this is not reflected when it comes to advertising. Up-to-date figures are hard to come by, but research from Lloyds Banking Group in 2016 showed that disabled people featured in just 0.06% of advertising.

This was the main driver behind Martyn launching Purple Goat. He thinks the world of marketing and advertising is now becoming a lot more socially aware, and is ready for disruption.

“I believe it’s partly the way public opinion has improved around diversity and inclusion,” he says. “Brands have been fearful of getting disability wrong, but they’re now fearful of being called out for doing nothing.”

Tess has certainly seen a pick-up in social media work. Up until last year, it was something she did as a sideline, but towards the end of 2020 she took the plunge to become a full-time influencer, and now works with an agent to manage her workload.

It wasn’t as easy as people may think, she says. “You can’t just wake up one day and decide you want to become a social influencer.”

‘Demanding to be seen’

Last year London-based luxury shoe brand Kurt Geiger started working with Northern Irish amputee model and influencer Bernadette Hagans.https://www.instagram.com/p/CElojtWpucY/embed/captioned/?cr=1&v=13&wp=589&rd=https%3A%2F%2Fwww.bbc.co.uk&rp=%2Fnews%2Fbusiness-56073239#%7B%22ci%22%3A2%2C%22os%22%3A10455%2C%22ls%22%3A334%2C%22le%22%3A427%7D

The company’s chief executive, Neil Clifford, thinks that the rise in disabled influencers is down to the public’s change of mood.

“The boom in social media has given a voice to those who have previously been under-represented in the public eye and they are, quite rightly, demanding to be seen and heard,” he says. “People expect businesses to utilise their influence to counter inequality and many brands are reacting to this need.”

Twenty-six-year-old Pippa Stacey from York works in the charity sector, and blogs about living with chronic illness. Pippa, who lives with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, has also worked with Purple Goat doing social media campaigns for brands such as Tesco.

“Influencer marketing is about so much more than just the hard sell. It’s about supporting a positive image of the brand and their values, of which inclusivity should be central in this day and age,” she says.https://emp.bbc.co.uk/emp/SMPj/2.39.19/iframe.htmlmedia captionPippa Stacey: “My content outperformed the non-disabled influencers”

Inclusivity on the part of big brands shouldn’t just be a tick box exercise, something they feel compelled to do to avoid criticism, she says.

“Having an ongoing relationship with disabled influencers, and taking the time to understand their platform. and their audience, can help brands construct the most effective campaigns in a socially conscious way.”

Listen and seek out

Authenticity is “the essence of a brand”, according to Dr Annmarie Hanlon, a lecturer in digital marketing at Cranfield School of Management.

“Without it they’re simply a shell with no substance. In our online world where consumers can check, verify and confirm details in minutes, it’s essential that brands remain true to themselves and present their authentic self.”

She adds: “Disabled influencers need a connection with the brand they’re promoting for it to be meaningful. Having a spokesperson that’s living with a disability adds another layer of trust and credibility for the brand.”

Caroline Casey is the founder of the Valuable 500, a worldwide initiative that encourages companies to push the needs of disabled people at board level.

She also believes that things are changing and that big companies are realising that it makes commercial sense, not just to listen to disabled customers, but to actively seek them out.

“Brands can now see the opportunity for innovation as well as growth and talent for an $8 trillion (£5.7tn) market,” she says, referring to the estimated spending power of disabled people globally.

“It’s not just about being seen to be doing good. It makes good business sense to expand your market.”

It’s a view shared by Laura Johnson, the co-founder of Zebedee Management, an agency that represents disabled models and influencers.

The agency manages Bernadette Hagans, who worked with Kurt Geiger, as well as Ellie Goldstein, the Essex model who was born with Down’s syndrome, and whose picture last year became Gucci Beauty’s most liked Instagram post.

Laura says they’ve seen a huge rise in brands keen to use disabled influencers to reach different markets.

“Where brands were once afraid they might come across as tokenistic for having a disabled model or influencer as part of their marketing, there’s a realisation now that disabled influencers really can influence. It makes simple commercial sense.”

Covid: Special School Teachers Angry At Vaccine Wait

February 25, 2021

Special school teachers are angry they must wait for a Covid jab while office-based council employees have already had theirs.

Staff in North Tyneside said they were more at risk because some pupils struggled to wear masks, to socially distance or catch coughs and sneezes.

One teacher, who asked to be anonymous, said they felt “hung out to dry”.

North Tyneside Council said it was “disappointed” all teaching staff had not been prioritised for the vaccine.

Director of children’s and adult services Jacqui Old said the National Joint Committee on Vaccination and Immunisation (JCVI) priority list did not include school staff.

But social care staff, transport escorts and staff in special schools who “provide direct personal care and clinical interventions” had been invited for vaccination, she said.

Industrial action

Teaching staff in North Tyneside said those working in similar schools in neighbouring authorities had been vaccinated.

“This wasn’t with leftover vaccine – they were given appointments at hospital,” one said.

“We feel hung out to dry and industrial action can’t be ruled out.”

One teacher said even staff required to physically restrain some pupils because of their behaviour had not been vaccinated.

“We already operate in environments that have more risks than mainstream schools due to the needs of the pupils,” they said.

“We have worked whilst other schools are closed and we even worked over our holidays last year to educate pupils and support families.”

Fear of mental health crisis as loneliness rises dramatically amongst disabled people

February 25, 2021

A press release:

 

  • Almost two thirds (61%) of disabled people are now chronically lonely, rising to 7 in 10 (70%) of young disabled people, according to new research conducted by the national disability charity, Sense.
  • Over two thirds (70%) of disabled people say their mental health is affected by social isolation, raising concerns of a significant increase in mental health conditions.
  • Tackling mental health issues and addressing chronic loneliness caused by the pandemic is what the majority (35%) of disabled people believe the government should prioritise once the vaccination rollout is complete, topping the NHS (32%), economy (22%), and education (8%).
  • Figures show that disabled people were disproportionately affected by social isolation and loneliness before the pandemic, but the dramatic increase has led Sense to call for urgent action from the government.
  • Sense is also inviting the public to sign its pledge to tackle social isolation and receive a free guide on the role they can play in making life more accessible for disabled people.

(Pictured: Christine Punt experiences an “overwhelming sense of isolation”.)

London, UK, 25 February 2021 – New research has sparked fears of a mental health crisis facing disabled people, as almost two thirds (61%) of disabled people say they are experiencing ‘chronic loneliness’*, feeling lonely ‘always’ or ‘often’, rising to 7 in 10 (70%) of young disabled people, aged 16 to 24. Sense, the disability charity that carried out the research, has called for urgent government action.

There are 14.1 million disabled people living in the UK, and while loneliness has risen across the whole population in the last year, today’s announcement reveals that it has jumped by a quarter for those with a disability, who prior to the outbreak, were already disproportionately affected by the issue.

More than a third (37%) of disabled people said they were chronically lonely before the pandemic, rising to one in two (54%) for 16 to 24-year olds. A third (33%) of disabled people would be limited to having under an hour interaction with someone else, each day.

Over two thirds (70%) of disabled people now say that social isolation is affecting their mental health and wellbeing, with 2 in 5 (40%) reporting an impact on their physical health. This has led to the majority of disabled people (35%) believing that the government should prioritise tackling mental health issues caused by the pandemic, over the NHS (32%), economy (22%), and education (8%), once the vaccination rollout is complete. 

The research is further evidence of the disproportionate impact the virus has had on the lives of disabled people. According to the latest data from the Office for National Statistics (ONS)**, disabled people account for almost six in 10 (59 per cent) of all deaths involving coronavirus, while making up 22 per cent of the population. Many disabled people have said that they have felt forgotten during the pandemic,  with social care support reduced, which has meant they have been unable to do basic chores such as leave the house, eat, wash themselves, socialise or attend essential medical appointments. 

The new study by Sense, which surveyed 1,011 disabled people***, reveals that 2 in 5 (40%) disabled people believe that disabled people and their needs have not been prioritised by the Government during the pandemic.

Christine Punt

(Pictured: Christine Punt)

Christine Punt (70) is deafblind (combination of sight and hearing loss), and lives in Watford with her husband, George. She has been shielding since the start of the pandemic, and with her care support reduced has had to depend heavily on her partner. She says the situation has taken a toll on their relationship and left her feeling frustrated and isolated.

Christine Punt said:

“I feel an overwhelming sense of isolation all the time, I have spent weeks at a time in bed. I have felt more aware of my disability throughout the pandemic, and I get frustrated as I cannot rely on support in the same way.” 

Lucy Dawson

(Pictured: Lucy Dawson)

Lucy Dawson (31) is also deafblind and lives with her guide dog in supported living accommodation in Norwich. As a disabled person, she says she has experienced social isolation and loneliness throughout her life, but prior to the pandemic managed to keep active, meeting with friends and family once a week, and taking part in her hobbies, photography, and poetry.  But Lucy says that events of the last year have taken a tremendous toll on her mental health and wellbeing.

Lucy Dawson, said:

“Since the pandemic, I’ve become totally isolated and am struggling with depression. I’m not as active as I was and have stopped doing the things I enjoy. My sleep is all over the place and my relationships have been affected.”

“The pandemic has made life really difficult for disabled people, and it feels like we’ve been cast aside and forgotten.”

Sense is calling for urgent action from the government, which includes scaling up mental health support for disabled people, and greater investment on preventative measures, such as dedicated services that tackle loneliness.

Richard Kramer, Sense Chief Executive, said:

“Many disabled people were already experiencing high levels of social isolation and loneliness before the pandemic, and the last year has made the situation much worse, raising fears of a mental health crisis.”

“Throughout the pandemic the needs of disabled people have been overlooked, and they have often felt forgotten.”

“The government must recognise the severe impact the pandemic is having on disabled people and improve the support available, so they are not left isolated and cut off from society.”

Sense is also aiming to raise disability awareness and understanding amongst the general public. 2 in 5 disabled people (44%) said it would be the most helpful measure in tackling social isolation, second only to introducing more community activities where people can meet (51%).

Richard Kramer, Sense Chief Executive, continued:

“We have all felt disconnected from others at some point during this pandemic, but loneliness has disproportionally affected disabled people. Many disabled people told us how they don’t have support networks around them and feel cut off from their local community. Others have struggled to leave their homes at all or to access and use digital technology to connect with people.”

“More widely, disabled people face practical challenges such as the need for accessible transport and buildings, financial support and appropriate social care. However, a lack of understanding and awareness of disability is also a significant obstacle.”

“We have all now experienced how it feels to have barriers preventing us from participating in everyday life. Our hope is that as we plan our way out of lockdown and begin to imagine what our lives will look like post-COVID, we can all commit to making society more accessible for everyone.”

“We can’t change what disabled people have experienced during the pandemic, but a more accessible society and a commitment to address loneliness can be its positive legacy.”

Sense is calling on the public to sign its pledge, committing to help create a more accessible society.  Upon signing the pledge, supporters will receive a free guide on how to make life more inclusive for everyone.

For more information, visit: www.sense.org.uk/LeftOutOfLife

Covid: 150,000 With Learning Disabilities To Be Prioritised For Vaccine

February 24, 2021

Everyone on the GP learning disability register should be prioritised for a Covid vaccine, the joint committee on vaccination has advised the government.

This means 150,000 people at higher risk with severe disabilities will be offered a jab more quickly in England.

But those with mild learning disabilities should not expect to be prioritised.

It follows DJ Jo Whiley’s plea for people such as her sister, Frances, to be vaccinated as quickly as possible.

Whiley was offered the vaccine before her sister, who has a rare genetic syndrome and lives in residential care.

The broadcaster’s sister is recovering after being admitted to hospital with coronavirus earlier this week.

‘So relieved’

“This is a great day, I am so relieved. I’m so happy for all those people who have been living in fear,” Jo Whiley said, adding that it was “very difficult” to categorise people according to their disability.

The charity Mencap said everyone with a learning disability should check they are on the register and, if not, ask to go on it.

People with a “severe or profound” learning disability in England and Wales were already in priority group six for the coronavirus vaccine, along with unpaid carers for those with disabilities and the elderly.

And adults with Down’s Syndrome have already been offered a jab, in priority group 4, as part of the UK’s target to vaccinate 15 million people by mid-February.

Now everyone on their GP’s learning disability register will be invited for vaccination as part of priority group six, Public Health England has confirmed, regardless of how severe their disability is.

And the NHS is being asked to work with local authorities to identify other adults, in residential care or receiving support to live in the community, who are severely affected by a learning disability and may not be registered, but who should be offered a vaccine.

Risk from Covid

It comes after an analysis found that people registered with their GP as having a learning disability, who tend to be those at the more severe end, are more at risk of being seriously ill and dying from Covid.

There are 1.2 million people with a learning disability in England – but only a quarter to a third of them are thought to be on the GP learning disability register.

Prof Anthony Harnden, deputy chairman of the JCVI, said all those with severe learning disabilities were “very disadvantaged” and should be reached out to – but he said including people with mild learning disabilities was not recommended because they were at no greater risk than someone else of the same age.

Speaking in front of a committee of MPs, he said he didn’t want lots of families who might be concerned about their relative with a mild learning disability to start contacting GPs and “overwhelming them”.

However, Nicola Sturgeon announced that Scotland would prioritise all people with learning disabilities in group six on Monday. She said priority group six would be expanded to include those with mild or moderate learning disabilities.

A report from Public Health England in November found that people with a learning disability were up to six times more likely to die from Covid-19 and, in the 18-34 age group, their risk was 30 times higher.

‘Check the register’

The charity Mencap said the announcement was “fantastic news for people with a learning disability”.

“It’s now crucially important that everyone with a learning disability checks that they are on the register and asks to go on it if they are not,” said the charity’s Jackie O’Sullivan.

“Being on the register has many benefits and entitles people to annual health checks and prioritisation for future vaccinations, as well as allowing them to get the Covid vaccine and be confident they are protected.”

Helen Whately, minister for care in England, said everyone who is on the GP’s learning disability register would be invited for vaccination to protect those at higher risk from the virus.

“I have heard first-hand how tough this pandemic has been for people with learning disabilities and their families,” she said.

“We are determined those more at risk from Covid should be vaccinated as soon as possible.”

Love and Relationships After Brain Injury

February 24, 2021

Laura Barlow is an associate in the Adult Brain Injury department at Bolt Burdon Kemp.

There was happy news for James Cracknell and Jordan Connell recently, as they announced they are engaged to be married.

The tabloids seem to have focused on the relatively short period of time between James’ divorce from Beverly Turner, without considering some of the more complex issues surrounding love and relationships after brain injury. I shall therefore explore those complexities a bit more here.

It is widely known that James suffered a serious brain injury in 2010, after being hit by a petrol tanker whilst cycling in The US. Despite making a good recovery, James was left with some permanent effects of the frontal lobe damage to his brain, most notably, changes to his personality and behaviour.

James and Beverly worked at their marriage for several years before accepting that things were not working. And although marriages and romantic relationships can survive the changes that come with a brain injury, it’s not unusual for relationships to come to an end. In some cases the injured party feels like a changed person and they may feel differently about the relationship post-injury. Where there has been personality change, the uninjured partner may suffer a sense of loss, loneliness and grief for the partner they used to know. Additionally, the boundaries between the roles of partner and carer can sometimes become blurred, which can lead to frustration, resentment and fatigue for both parties. In some cases, despite best efforts, there may be no way to make the relationship work going forwards.

It’s not all bad news though, because many relationships DO survive long-term following brain injury, and as James has proved, people who want it CAN find new love after brain injury.

In terms of nurturing existing relationships following brain injury, one of the most important things is that the partner learns about brain injury and the effects of the injury on their loved one. The more educated somebody is about their partner’s injury, the more likely they are to be able to utilise strategies to manage difficulties.

And we have to remember that it’s not only romantic relationships that can be challenging following brain-injury. Other family relationships can be put under a great deal of strain:

  • Parents of a child (whether adult or child) who has suffered a brain injury can suffer a great deal of fear and apprehension about their child’s future – they may want to protect their child from the world, which can cause conflict and tension.
  • Younger children of a parent who suffers a brain injury may find themselves taking on a caring role, forever changing the parent-child dynamics and resulting in a ‘stolen’ childhood.
  • Other family relationships can also be impacted by brain injury (siblings, grandparents, aunts, uncles etc.), as can relationships with those outside the home, including friends and colleagues.

Lockdown has placed an additional strain on many families living with a brain-injury survivor. Securing appropriate practical and emotional support can make a huge difference to all concerned, but for many, getting the right support has been especially challenging in the past year, with the isolation, social-distancing and lockdown measures that have been in place.

With the reduction in care services and support centres, many family members living at home with brain injury survivors have had little, if no, respite from the daily strain of keeping their loved one safe and healthy. Many charities and support organisations have moved services online during the pandemic, and although not quite the same as meeting face-to-face, they can provide that virtual ‘change of scenery’ and enough reassurance and support to give people a short break and a mental-health boost.

For those brain injury survivors who are keen to find a romantic partner, please have hope! The idea of dating can be a daunting prospect for anyone, but for brain injury survivors, some additional courage might be needed. Many brain-injury survivors successfully build and maintain loving relationships after brain injury, and there are specialist agencies who can help those who aren’t sure where to start in actively pursuing a new romantic relationship.

When it comes to going on dates, brain injury survivors may have concerns about a number of things, including communication difficulties. The key seems to be openness, and communicating honestly about any difficulties at the outset. Ensuring personal safety may also be a concern, especially when dating in-person comes back! Some tips for ensuring safety (for anyone) are to always meet in a public place until you feel you can trust somebody, being wary of how much personal information you share, and tell someone you trust if you feel a new partner is putting you under pressure to progress the relationship more quickly that feels comfortable.

With the right support, brain-injury survivors should be able to enter into new relationships with confidence and pride. And instead of the implied criticism directed towards James Cracknell for progressing a new relationship, we should all be applauding him and following his lead.

The brain injury association, ‘Headway’, has produced some excellent resources on relationships after brain injury, which you can find here.’

Record number of negligence claims over amputations

February 24, 2021

This is a guest post.

Fortunately, in the UK medical negligence mistakes are rare due to the high standard of care we receive. Unfortunately, when mistakes happen the impact on the individual and their family is huge and can be life changing. Mistakes come in all forms, with some of the most severe examples being amputation negligence. Helping someone pick up the pieces and get back to doing the thigs they love after an accident or negligence that leads to limb loss is so important. In this blog I will explore some of the key issues and questions I often get asked when helping a client along the recovery road. 

Amputation resulting from medical negligence can be caused in a variety of ways such as:

  • A surgeon operating on the wrong site
  • Poor management of peripheral neuropathy in diabetic patients
  • Delayed treatment of an infection
  • Failure to recognise the blood supply has been cut off to a limb
  • Where cancer is involved, it is important to stop the spread as soon as possible, and failing to do so can lead to the need for amputation.

Due to the aggressive and rapid development of infections and viruses, delay in treatment of a few days or even a few hours can mean that it is too late to save hands, toes, feet or in extreme cases whole limbs and therefore timing in these cases is critical.

How to bring a medical negligence claim and the time limits

To bring amputation related medical negligence claim there are a number of different tests that must be satisfied for it to be successful.

Firstly, we must prove that the Doctor/Hospital have breached their duty and the care and treatment they provided was negligent which fell below the reasonable standard expected from a medical practitioner. Secondly, we must show that as a result of this breach, you have suffered injury, i.e. have had to undergo an avoidable amputation.

In terms of time limits, you have 3 years from when the amputation took place to make a claim for compensation. If you’re claiming on behalf of a child, you have until their 18th birthday to start the claim, after which it will become the child’s responsibility and the 3-year deadline applies

An amputation will have a dramatic effect on anybody’s life. Apart from the physical and emotional pain and suffering, it can prevent you from working in your job leading to having to take work which is less paid.  

The physical aspects following an amputation are very tough and the mobility restrictions will require specialist prosthetics to help with movement on a day to day basis. In some cases due to not being able to climb stairs, it may even lead to changing to an alternative property without stairs.  Even if you can remain in your present home, it is likely that special equipment will be required to assist with your everyday needs.

All of these arrangements cost a very considerable sum of money and that is why compensation is of vital importance.

Whilst compensation cannot return your life to exactly how it was before your accident, it is designed to get you as close as is reasonably possible and will help secure funding to ensure life continues to be full of enjoyment with the use of the equipment and support required.

Before an incident everyday tasks can be tiresome or just part of a routine, but take that away suddenly and with no warning, you quickly realise that those small acts are essential to who that person is. Bringing a claim is about getting people back to that point, ensuring they have the right equipment to do these everyday jobs that make them, them. For one of my clients, playing sport was an essential part of life so we made sure that he was able to purchase the relevant prosthetics  children to bed was all he wanted to do, so ensuring he had an up-to-date wheelchair that was easily moveable in a small bedroom was central to the case. 

Bhavesh Patel, Solicitor in the Clinical Negligence team at Lime Solicitors

Face masks in classrooms “devastating” for deaf children

February 23, 2021

A press release:

 

The National Deaf Children’s Society has responded to reports that face masks will be mandatory in secondary school classrooms when schools return on March 8th.

Ian Noon, Head of Policy at the National Deaf Children’s Society, said:

“With England’s 35,000 deaf pupils close to a return to education, the goalposts on face masks have moved yet again. Public health must take priority, but bringing face masks into classrooms will have a devastating effect on deaf children’s studies, mental health and ability to take part in lessons.

“The Government cannot make an announcement and expect this to be enough. It must move quickly to show exactly how it will guarantee deaf children can still access their lessons.

“We cannot have a situation where thousands of deaf children and young people are unable to understand their teacher, leaving many with little point in even attending class.

“The future of their education is at stake and the clock has already started.”

People With Mild And Moderate LD Are Added To #VaccinePriority Group 6 In Scotland

February 23, 2021

Actress Kate Hudson Responds To Music Backlash

February 23, 2021

Actress Kate Hudson has responded to backlash about Music, the film she stars in alongside Maddie Ziegler.

The movie is about a neurodiverse teenager, who communicates through a tablet that speaks for her.

It was directed by pop star Sia, but after the trailer was released back in December, it received a lot of criticism for its portrayal of autism.

Kate Hudson said she feels “terrible” when anybody feels left out, and that she and the film’s creators “are listening”.To enjoy the CBBC Newsround website at its best you will need to have JavaScript turned on.

In the movie, Kate plays the half-sister of the film’s main character, Music. After becoming the teenager’s only guardian, she sets out to build a better life and family for them.

Kate said: “I think when people see the film, that they will see the amount of love and sensitivity that was put into it.

“But it is an important conversation to have, not just about this movie, but as a whole – about representation.

“For me, when I hear that there’s anybody that feels left out I feel terrible.

“It’s an ongoing and important dialogue to be had, about neurotypical actors portraying neurodivergent characters.

“It is an important one to have with people with experts and who know how to engage in the conversation.

“I encourage it, truly. I think that it’s important to say that we are listening.”

Why have some people criticised the film?

Music was recently nominated for two Golden Globe awards, but some people feel upset about the film.

Many people questioned why Sia decided to cast Maddie Ziegler – who doesn’t have autism – as the main character, instead of an actress who does.

Actress Bronagh Waugh wrote on social media: “Hi Sia, can I ask why you didn’t cast a disabled actor for this part?”

“It’s pretty offensive the way you’ve chosen to portray this character. People with disabilities are not broken and don’t need fixing.”

Jane Harris, from the National Autistic Society, told Newsround: “We know and have worked with many talented autistic actors and we think they should have had a chance to play the part of an autistic character.”

One fan said: “Oh Sia…..you’ve broken the hearts of so many autistic people.”

What has Sia’s response been?

At first Sia defended her decision and seemed annoyed at the criticism: “Why don’t you watch my film before you judge it?”

She said she did hire “special abilities kids” to work on the film, including one girl on the autistic spectrum, before casting Maddie, but said this actress found working on the film “unpleasant and stressful”.

She tweeted that she had “two people on the spectrum” advising her on the film and that she had researched the film for three years.

However, following the recent Golden Globe nominations and the ongoing criticism, Sia tweeted: “I promise, I have been listening” and that she was “sorry”.

 
 

One scene in the film shows Music’s character being held down and restrained to calm her down. This has sparked a huge backlash as this can be very dangerous for autistic people.

Responding to these concerns, Sia tweeted: “The motion picture MUSIC will, moving forward, have this warning at the head of the movie. MUSIC in no way condones or recommends the use of restraint on autistic people.”

“I plan to remove the restraint scenes from all future printings. I listened to the wrong people and that is my responsibility, my research was clearly not thorough enough, not wide enough.”

The singer then deleted her Twitter account.

The film is due to be released this month.

Covid-19: Manx Adults With Learning Disabilities To Get Vaccine Early

February 23, 2021

Some people with learning disabilities will be vaccinated against Covid-19 earlier than previously planned, the Isle of Man government has said.

Vaccine priority groups for adults with learning disabilities had differed depending on their conditions, but all will now be vaccinated by 31 March.

The change followed a “clear recommendation” from clinical advisors, a government spokesman said.

Health Minister David Ashford said it was a “practical decision”.

The Isle of Man had been following UK guidance, which recommends that people with Down’s syndrome receive the jab in priority group four, adults with severe or profound learning disabilities get it in group 6 and any remaining people have it in accordance with their age.

‘Safe and comfortable’

More than 150 people will now receive the vaccine at a dedicated hub at the Tall Trees adult day care centre, close to Noble’s Hospital in Braddan, in the coming weeks.

Mr Ashford said it was “important to create a space where individuals will feel safe and comfortable when getting their vaccination”.

Adults with learning disabilities who live in residential care have already been receiving the vaccine as part of the rollout to care homes, which began in January, with about 100 having had at least one dose.

To date, more than 13,000 people have had their first dose of either the Pfizer/BioNTech or Oxford-AstraZeneca vaccine and nearly 5,000 have had both doses.

A total of 456 people have tested positive for the virus since the start of the pandemic, 25 of whom have died.

There are currently 21 active cases on the island.

Hackney Has Started Dedicated Vaccination Events For People With LD

February 22, 2021

Same Difference joins Jo Whiley in hoping other areas do the same.

Covid 19 my vaccine experience.

February 22, 2021

The poor side of life

Yesterday I had my Covid 19 vaccination. I had the Pfizer vaccination and I really couldn’t wait for this day to arrive.

Most of you will know that my Covid 19 and Long Covid experience has been horrendous.

I first became ill with Covid 19 last April and I quickly became extremely unwell. You can read about this in my previous blog posts. I also developed Pneumonia and pleurisy and had numerous relapses.

To say that I was excited for my vaccine was an understatement, I can never forget how ill I have been and I certainly don’t want to catch it again. Not only do I have to think about myself I also have to think about my daughters wellbeing as well.

I was virtually bedbound for around a month except for the odd trip downstairs which completely exhausted me. As a result my illness really scared my daughter…

View original post 931 more words

Disability And Dating: ‘I Didn’t Know What Bisexual Was’

February 22, 2021

LGBT people with learning disabilities have often faced barriers when it comes to their identity – but some are now using their negative experiences to bring about change.

“I thought I was going mad, I thought there was something wrong with me.” That’s how Shaun Webster felt when he first realised he was attracted to both men and women.

Shaun is 48 now, but It took him over a decade to come out as bisexual – in part he says, because of barriers many LGBT people with learning disabilities face.

Shaun has short-term memory issues and dyslexia. He attended a special needs school when he was younger, where he says he wasn’t given a “proper sex education”.

“I didn’t know what bisexual meant,” he says. “Special needs schools didn’t do proper sex education for people with learning disabilities. They think people like us don’t have sex.”

In 2019, relationship, sex and health education was made mandatory in all schools in England. Before that, special needs schools didn’t have a mandate to provide sex education, so the provision was often mixed.

For some people, the lack of sex education in their youth made it really hard for them to come out as LGBT in later life.

‘Making babies’

Shaun says the little sex education he did get largely focused on “making babies rather than explaining terms like gay, bisexual, trans and non-binary”.

He didn’t come out until he was 38, but says he wishes he could have sooner. “Coming out when you’re 38 is a big thing to do. It’s life-changing.” When he did, he says he felt “a huge weight had been lifted” and he is now proud to be bisexual.

Shaun now works for Change, a learning disability charity, and as part of his work he helps to give sex education lessons.

One of the sessions Shaun runs focuses on sex and relationships, while the other looks at LGBTQ+ awareness. He says they talk about everything from sex, consent and the difference between friendships and relationships.

A lack of sex education isn’t the only barrier people with learning disabilities have faced.

Ray Everall is a 21-year-old trans man from Brighton. He struggles with communication, audio and visual processing and has learning difficulties, including ADHD, dyslexia and dyspraxia. For him the main challenges are around accessing trans health services.

He started taking testosterone in 2018 and is having top surgery – the removal of breast tissue – next month.

“The main difficulty is processing information especially when it comes to gender identity clinics, which are a whole minefield,” he says. “They have a checklist of things you need to be able to explain and I have difficulty expressing myself properly.”

“There are a lot of invasive questions about your sex life,” he adds. “That makes me uncomfortable. And when I’m uncomfortable it’s even harder for me to express myself.”

Trans people often report coming up against barriers in the health system, but having a learning disability adds another layer of difficulty for Ray. “Trans people are always infantilised to some degree and so are people with learning disabilities, so it becomes really challenging.”

Ray is now part of the NHS youth forum and is working on improving trans and non-binary access to healthcare. One of the things he does is to help to make leaflets with advice on, including issues such as legally changing your name and title.

And while Ray has met some nice people on dating apps, his learning disability can make them challenging territory. “I really struggle to read tone, so the other day a girl messaged me saying ‘you seem very bubbly’. But I was like what does that even mean?”

He adds: “Sometimes I take about a month to reply and that can make it seem like I don’t care but that’s not the case. I care a lot, I can just be quite forgetful because of my learning disability.”

Ray’s last relationship was with someone who also had learning disabilities. “I love being with other people who have learning disabilities because it’s so nice to be with someone who can empathise with your experience, even if they don’t have the same learning disability they just have more understanding.”

‘I’m making a difference’

Dr Claire Bates, runs Supported Loving, a national network that helps organisations support people with learning disabilities find love and relationships. She is also an honorary researcher at the Tizard centre, which specialises in learning disabilities, community care and autism.

Dr Bates says people with learning disabilities who identify as LGBT have often “really struggled to meet partners and find relationships”.

The situation is particularly hard for LGBT women with learning disabilities, she adds: “I work with dating agencies for LGBT people with learning disabilities and some of them don’t have any women on their books.

“We don’t know exactly why but we know that in sex and relationship education there is very little about two women together. Historically when it comes to LGBT sex education it’s been more focused on gay men. I’m not aware of any learning resources solely aimed at LGBT women with learning disabilities.”

Dr Bates adds: “We certainly don’t talk about relationships with people who are LGBTQ very often in social care, there are some social care organisations doing a brilliant job but some just aren’t doing enough.”

The Care Quality Commission, which regulates social care in England, has guidance that says social care providers should support patients with their sex and relationship needs but it’s not listed as a key line of enquiry, meaning providers aren’t judged on the level of sex and relationship support they provide in inspections.

In social care settings – including in care homes, for people in supported living and those in their own homes – there isn’t much training for staff on how to have conversations around sex and relationships with patients who have learning disabilities.

Dr Bates feels regulators need to be seeing sexuality as “a fundamental part of being human”.

“In an inspection we should be looking at friendship and relationship support and that should include the whole spectrum of sexualities,” she says.

As for Shaun, today he is married and lives with his wife and children. He has an MBE for his work helping people with learning disabilities abroad and in the UK.

“I feel like I’m making a difference,” he says. “I feel proud to be a role model for people with a learning disability to help them to understand about their sexuality.”

Jo Whiley On Sister’s Covid: ‘It’s Been The Worst Week Of Our Lives’

February 22, 2021

DJ Jo Whiley says it has been “the worst week of our lives” as her sister, who has a learning disability and diabetes, is in hospital with Covid.

The BBC Radio 2 presenter said Frances, 53, had been offered a vaccine on Saturday but it was “too late” and she was now “fighting for her life”.

And she urged ministers to “forget the classifications” and protect all those with learning disabilities.

The government said it was working hard to vaccinate those most at risk.

Whiley said her sister had become very ill since testing positive for coronavirus following an outbreak at her care home in Nottinghamshire.

“Twenty-four hours ago we were talking palliative care and yesterday she rallied round and we are seeing her oxygen levels rise, so at the moment we have got hope.

“Twenty-four hours ago we didn’t have any hope at all, so she is an amazing fighter, she always has been a great fighter and I’m just hoping that her spirit gets her through.”

But she said it was particularly difficult to treat people with learning disabilities because they had complex needs and often struggled to communicate.

She said Frances had been so frightened that she would not allow medical staff to give her oxygen, adding: “That is why her oxygen levels plummeted, that is why she ended up fighting for her life.”

Whiley said her parents had not slept “for days” but fortunately had been allowed to be with Frances in hospital.

She said: “The idea of Frances having to do this on her own is unthinkable, and also actually people couldn’t cope with Frances.”

Her sister was so terrified when she was admitted that “she actually rampaged through the hospital and people couldn’t contain her and security guards had to be involved, they had to restrain her”, Whiley explained.

She added: “The fact that my mum was there and was able to talk her down and to be there with her and to try and give her oxygen was crucial.”

Whiley has previously questioned why she was offered the vaccine before her sister, who has the rare genetic syndrome Cri du Chat, but said it was possibly because she was deemed a carer for her sister.

People with diabetes and those with a “severe or profound” learning disability are in priority group six for the coronavirus vaccine, along with unpaid carers for those with disabilities and the elderly.

Speaking to Andrew Marr, Whiley said: “It felt like the cruellest twist in the world because I’ve been asking for her, wanting for her to have her vaccine for a year… to be protected.

“Then, for me to suddenly get a call to say that I’ve got the vaccine, it just felt hideously unfair.

“And she was actually called in for her vaccine last night, my mum got a message to say that she could get vaccinated, but it’s too late, she’s fighting for her life in hospital. It couldn’t be crueller.”

Whiley said she hoped speaking about her sister would underline the need to get people with learning disabilities vaccinated “as quickly as possible”.

She said: “Forget the classifications, forget the cohorts, just protect these people. They are so precious, they’re so vulnerable and they have no way of fighting for themselves – we have to fight for them. Get them and their carers vaccinated, stop them dying.”

‘Huge health inequalities’

Health Secretary Matt Hancock, also speaking to Andrew Marr, said: “My heart goes out to Jo and to her sister and her whole family.”

Asked if he found it odd that Whiley was offered the vaccine before her sister, he said it was “very important that we follow clinical advice in terms of the order of prioritisation”.

“And in group six, as it’s called, that’s where we vaccinate both those with learning disabilities and also their carers. And that group is being vaccinated right now.”

Edel Harris, CEO of learning disability charity Mencap, said the story of Whiley’s sister had highlighted that people with learning disabilities “suffered huge health inequalities” in England and should be prioritised for vaccination.

Ms Harris told the BBC: “The virus is not deciding if you are profound or severe, or mild or moderate – GPs don’t even use those definitions. That’s why we think they’re arbitrary, they don’t mean anything.”

Nearly six out of every 10 people who died with coronavirus in England last year were disabled, according to figures from the Office for National Statistics.

The Department of Health said in a statement: “We understand this is an enormously challenging period for many people and the NHS is working hard to vaccinate those most at risk, as quickly as possible.”

It said the government was following the recommendations of independent experts at the Joint Committee on Vaccination and Immunisation (JCVI) on which groups to prioritise for Covid-19 vaccines.

It added: “The committee advised the immediate priority should be to prevent deaths and protect health and care staff, with old age deemed the biggest factor determining mortality.”

Frances Whiley Is Very Ill In Hospital

February 20, 2021

Yesterday Jo Whiley Tweeted news of her sister’s illness:

She then added some useful advice:

And asked for some urgent support:

Same Difference wishes Frances, Jo and the family all the very best. If you are on Twitter and able to help them or even send thoughts, please do.

Ian Rankin Hits Out At Lack Of Covid Jab Advice For People With Learning Disabilities

February 19, 2021

The crime writer Ian Rankin has criticised the “woeful” lack of information on the Covid vaccine rollout for people with learning disabilities after revealing his son is still awaiting his jab.

Rankin, whose 26-year-old son, Kit, has Angelman syndrome and lives in a care facility close to the family home in Edinburgh, accused governments and the media of “ignoring” the learning disabled in an interview with the disability campaigner Nicky Clark.

His intervention comes after the BBC DJ Jo Whiley described the “nightmare” of being offered the coronavirus vaccine before her sister, who has a learning disability and diabetes.

Asked about the case at first minister’s questions on Wednesday, Nicola Sturgeon promised that people with learning disabilities would be invited for vaccination from next week.

She said her government was considering whether it needed to take further action but added that “a range of people with learning disabilities” are already classed as extremely clinically vulnerable and were thus included in the 140,000 of that group already vaccinated. “[Others with learning disabilities] will be offered the vaccine as part of cohort six and invitations should start to be issued from next week,” she said. Advertisementhttps://093e8a9d04b5fc2b27d154352d5ddba2.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

Rankin later told the Guardian that he “would question the first minister’s interpretation and the advice given to her”.

He said: “Where Kit lives, his housemates are in and out of hospital all the time – I would say that makes them extremely vulnerable. It is hard to see how any health professional or scientific adviser could decide which group Kit or anyone else belongs to without seeing them and making an assessment.” He added: “The lack of information for carers and families has been woeful.”

Angelman syndrome is a genetic condition that affects the nervous system and causes severe physical and learning disabilities.

In the interview with Clark, Rankin said: “The learning disabled have been ignored by governments and the media. We keep being blithely told that care homes are at the top of the list and everybody in care homes has been treated and you are thumping the table going ‘no they’ve not’. The most vulnerable are people with learning disabilities and my son has not been vaccinated yet. Perfectly healthy 60 to 65-year-olds in Scotland are being vaccinated but not my son or the other people in his facility.”

He said he had not been told where or when Kit could expect the vaccine, adding that the dearth of information was “very frustrating” and indicated a “lack of joined-up thinking”.

He described how his son had been shielding in the care facility where he has been unable to hug visitors since the beginning of last March. Praising Kit’s “phenomenal” carers, he said his son had lost out on trips out, physiotherapy and other therapies that previously gave his day structure and interest.

He said Kit, who he described as “incredibly sociable and tactile”, was allowed home for one night at Christmas, the first time he had been able to leave the facility since last February. “That was the first tactile contact we’d had with him. Now we’re back in lockdown again and it’s back to seeing him through the gate or over the wall.”

According to latest estimates from the Office for National Statistics, for those with a medically diagnosed learning disability the risk of death from coronavirus was 3.7 times greater for both men and women than for people who did not. People with a “severe or profound” learning disability are in priority group six for the vaccine, which is being targeted now.

Engineer Creates Robotic Glove To Help Strengthen Grip

February 19, 2021

An Edinburgh engineer has created a robotic glove which uses artificial intelligence to boost muscle grip.

Ross O’Hanlon came up with the idea after seeing his aunt, who has multiple sclerosis, struggle to do tasks such as drink water or change the TV channel.

He hopes it will help millions of people with hand weaknesses to retain their autonomy.

The glove detects the wearer’s intention to grip using a process called electromyography (EMT).

This measures the electrical activity which is created in response to a nerve’s stimulation of the muscle.

It then employs an algorithm to convert the intention into force, helping the wearer to hold an item or apply the pressure needed to complete an activity.

The technology is expected to help with a range of daily tasks including opening jars, driving and making tea.

‘Healthy ageing’

The glove is the first product from BioLiberty, a Scottish start-up Mr O’Hanlon co-founded with three other engineering graduates.

It is estimated that 2.5 million people in the UK suffer from hand weakness through illnesses such as multiple sclerosis, motor neurone disease and carpal tunnel syndrome – as well those who have lost muscle mass due to age.

Mr O’Hanlon, 24, said: “Being an engineer, I decided to use technology to tackle these challenges head on with the aim of helping people like my aunt to retain their autonomy.

“As well as those affected by illness, the population continues to age and this places increasing pressure on care services.

“We wanted to support independent living and healthy ageing by enabling individuals to live more comfortably in their own homes for longer.”

The team have created a working prototype and have now secured support from Edinburgh Business School’s Incubator, based at Heriot-Watt University.

“We’re confident that support of this type will help accelerate the glove into homes more quickly,” he added.

Fear Of Dogs Can Be Relevant To PIP Mobility

February 18, 2021

With many thanks to Benefits And Work.

 

An upper tribunal judge has held that fear of dogs, if linked to a disability or health condition, may be relevant to a personal independence payment (PIP) mobility award.

The claimant listed her conditions as: autism, dyslexia, dyspraxia and depression.

In her PIP questionnaire the claimant wrote:

“I am able to plan routes and travel in familiar routes. However, I have a very severe Phobia of Dogs which is a result of sensory issues from my ASD which prevents me from undertaking journeys which are unfamiliar without someone to go with me or by travelling via car. This is due to my very severe anxiety that a dog may be present in the unfamiliar route”.

The claimant was awarded zero points for the daily living and for the mobility component of PIP.

The claimant appealed and was awarded 5 points for daily living by the first tier tribunal, not enough for an award, and still got zero points for mobility.

The tribunal noted that the claimant had a degree in theoretical physics and was studying law. It appeared to find much of her evidence unconvincing and overstated.

The tribunal noted that the claimant drives her son to school, uses trains and trams and goes out alone most days. They stated that they had difficulty accepting her argument that she could not go anywhere unaccompanied in case there was a dog off the lead and that she would not suffer overwhelming psychological distress. The tribunal held that the claimant suffered from anxiety rather than depression and her fear was of dogs running free, not of going to unfamiliar places.

The claimant appealed to the upper tribunal.

The upper tribunal judge found that the first tier tribunal had not made it clear why they had reached the decision they did: was it because they found the claimant’s evidence to be unconvincing, that the claimant’s fear did not amount to overwhelming psychological distress or because they considered that fear of dogs was not relevant to the descriptors.

The judge held that the claimants fear of dogs could fall within the scope of descriptor 1d: Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid, where the fear was linked to a physical or mental health condition, in this case autism. This would be the case where the fear was so great as to lead to overwhelming psychological distress when the claimant was unaccompanied, but the presence of another person would allow them to follow the route.

The judge upheld the claimant’s appeal and sent the case back to be heard by a new tribunal.

The principle in this case could be applied to other extreme fears that claimants may have in relation to following journeys.

You can download a copy of EE v SSWP (CPIP) [2021] UKUT 17 (AAC) from this link.

 

Philippa Day Prevention Of Future Deaths Report Published

February 18, 2021

With many thanks to Benefits And Work.

 

The coroner in the case of Philippa Day has published his prevention of future deaths report, which the DWP and Capita have to respond to by 12 April. The coroner has made three recommendations after highlighting ‘multiple errors’ in the administration of the claim and says that were it not for these, it is ‘unlikely’ that Philippa would have taken an overdose.

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.

The coroner noted the many mistakes made in Philippa’s claim and the effect these had on her finances:

“The administration of Philippa Day’s benefits claim was characterised by multiple errors, some of which occurred repeatedly throughout the period of her claim. As a result of errors made, Philippa Day’s income from benefits more than halved for a period of several months, causing her severe financial hardship. This then resulted in Philippa Day taking out high interest loans creating a financial problem that Philippa Day did not have the means to solve.”

The coroner also noted that Philippa was told she had to attend an assessment, even though this was clearly unnecessary:

“No assessment was in fact required in order to determine her claim and there was clear and abundant medical evidence that an assessment outside of the home would exacerbate her mental health against a background of two recent overdoses. . . . Although the error in decision making was drawn to the attention of those administering the claim on more than one occasion, it was not rectified as it should have been.”

The coroner was clear that the failures by the DWP and Capita led directly to Philippa’s death:

“The distress caused by the administration of Philippa Day’s welfare benefits claim led to Philippa Day suffering acute distress and exacerbated many of her other chronic stressors.

“Were it not for these problems, it is unlikely that Philippa Day would have taken an overdose of her prescribed insulin on 7th or 8th August 2019.”

The coroner has called for the DWP and Capita to take action in three areas:

1 Specific training for DWP call-handlers in how best to interact with people “suffering from mental ill health in such a way as to avoid inadvertently exacerbating the difficulties experienced”.

2 More detailed and more accurate records of calls, to improve decision making and allow for the efficient answering of queries made by claimants.

3 Improvements in the assessment process to allow incorrect decisions to be rectified and to allow appointments to be cancelled without the claimant being penalised.

Capita and the DWP must respond by 12 April to say what action they are taking or explain why they do not intend to take any action.

You can download a copy of the report from this link.

Lucy Hale Obituary

February 18, 2021

My daughter, Lucy Hale, who has died aged 26, was a composer who worked to help young disabled musicians to write and perform music.

Diagnosed with a neuromuscular disability at a young age, Lucy had to use a wheelchair and often required ventilatory support. Despite being physically unable to play an instrument and needing 24-hour care to support her independent living, she secured a number of commissions to write music, including with the national arts charity Drake Music. This led to a collaboration whereby she trained as a mentor to work with disabled and neurodiverse young people, supporting them to realise their creative skills.

Later she was appointed inaugural associate composer with the Bournemouth Symphony Orchestra’s Resound project, the world’s first disabled-led ensemble, and was subsequently composer in residence at the National Orchestra for All, which brings together 100 young musicians who would not normally get the opportunity to make music with others.Advertisement

Working with the National Orchestra for All was a source of particular pride and pleasure to Lucy, for while she took great joy from her own composing she was thrilled to be able to support and encourage other young musicians, and would constantly champion their achievements. She responded to all her achievements with great humility and a measure of disbelief.

Lucy was born in Thornton Heath, south London, to me and my husband, John Mellor, both of us social workers. Despite her disabilities, Lucy always showed a great determination of spirit, and from a young age had a real desire to experience new adventures. She was a keen dressage rider until forced to give up following spinal surgery.

After repeated admissions to intensive care during her early teens, Lucy attended Treloar’s residential school in Alton, Hampshire. She thrived there, and found a talent for musical composition, nurtured by her teacher, Jocelyn Watkins, who drew Lucy to the attention of the Royal College of Music junior department, where she was offered a place to study composition. From there Lucy went on to the Royal Northern College of Music in Manchester, graduating with a BMus and an MMus with distinction.

Lucy was a passionate and powerful advocate for the disabled community and a fierce defender of the NHS and its guiding principles. She was an inspiration to many, and her paediatric respiratory consultant often played her music to colleagues and students “to show them why we battle to save children with neuromuscular problems and to demonstrate what they are capable of achieving”.

She was on the Royal Philharmonic Society Composers programme, and was about to begin a PhD studying assistive technology in music. The outpouring of affection and acclaim for Lucy has been overwhelming, reflecting the profound impact she had on those who had the privilege of knowing and working with her.

She is survived by me and John, and by her older sister, Eleanor.

Frances Whiley: Another Sister Speaks For Her Brother With LD

February 17, 2021

Since the pandemic began more than a year ago, one of my greatest fears has been losing my brother, who lives in a care home. He is in his late 20s, is severely autistic and has epilepsy, as well as other complex needs. He is extremely vulnerable. According to Public Health England, people with severe learning disabilities are six times more likely to die from Covid-19 than the general population. In my brother’s age group, the 18-34 bracket, the death rate is 30 times higher.

Then there is the added risk of where he lives. According to the Office for National Statistics (ONS), living in a care home is a “major factor in the increased exposure of people with learning disabilities to Covid-19”. The communal nature of these facilities, combined with how much contact is required between care workers and residents – my brother needs help with everything, from washing and dressing to preparing food – makes transmission much more likely.Jo Whiley offered Covid jab before sister in care home who later tested positiveRead more

This is terrifying for families, many of whom are still waiting for their loved ones in care homes to be vaccinated and dread the news of an outbreak. This is the nightmare that the DJ Jo Whiley and her sister Frances are now living through.Advertisement

If my brother did fall ill, he would be unable to communicate his symptoms. His epilepsy means that a high temperature could cause a life-threatening seizure. Were he admitted to a hospital, he wouldn’t really understand what was happening. If treated using tubes for ventilation he would probably pull them out, and the fear might make him aggressive, so he could pose a risk to staff and patients. My fears for his life should he become ill were not helped by news about disabled people being sent “do not resuscitate” forms.

Then in January, we received the news that, along with other care home residents, my brother would be receiving the vaccine. I cried with relief. But the feeling was to be short-lived. After announcing that all care home residents in Wales would be vaccinated by the end of January, the Welsh health and social services minister, Vaughan Gething, said that he had meant only elderly care home residents.

To our shock, my brother was placed in category 6 of the Joint Committee on Vaccination and Immunisation (JCVI) priority list. His carers were distressed and confused. They had all been vaccinated, and furthermore, the care provider’s English residents had all been vaccinated too.

The JCVI guidelines focus on age groups rather than taking into account the “complex needs” of individuals such as my brother. At the same time, there is flexibility when it comes to making decisions about vaccine prioritisation under the UK’s devolved health system. What has emerged is, essentially, a postcode lottery.

In England, there seems to be more willingness to take personal circumstances into account at all levels: government, health board, and GP. Some GPs have spoken to disabled people and their advocates and agreed to move them up the list on the basis of their being “extremely clinically vulnerable”. Other doctors, health boards and local authorities have diverted spare, perishable doses of leftover vaccines to care homes for disabled people.

However, Wales’s adherence to the JCVI list has been especially rigid, and Welsh Labour’s intransigence when prevailed upon to think again has been depressing. I have spent the past two weeks on the phone and sending frantic emails to everyone I could think of – the GP, our assembly members, the health board, public health, various charities – while crying my heart out in between. Every day we had to wait felt like the day my brother could become sick. As a family we felt left behind.

On Friday, the care home finally received news of a vaccination slot for my brother. This was a decision that was made on a GP level, due in part, I suspect, to the letter the care manager wrote to the doctor laying out all the ways in which my brother is extremely vulnerable, as well as the advocacy of our family. The other residents in my brother’s care home, as in other Welsh care homes, are still waiting. Like the rest of group 6, they could be waiting until April (the Welsh government says it hopes to be more flexible with groups 5-9, but we will see how that works in practice). So while I am jubilant, I am also fearful for the 3,500 severely disabled people in care homes in Wales, and for the people across the UK who face similar battles.

It is still a mystery to me how the JCVI can lump all severely disabled people together when being in a care home puts a person at so much extra risk. Furthermore, it’s unfair that access to a jab for severely disabled people is dependent on being noisy and knowing who to lobby, and having the time to do so. The postcode lottery is unjustifiable and puts added strain on disabled people, their families, their carers and their doctors.How the Covid pandemic could end – and what will make it happen fasterDevi SridharRead more

Analysis by the ONS last week showed that six in 10 Covid deaths up to November last year were of people with a disability. Throughout this pandemic, disabled people and their families have been forced to confront the possibility of mortality. We have also had to face the fact that some people do not deem disabled people’s lives to be important or worthy, and would happily see them thrown under the bus if measures to protect them harm the economy. After 10 years of ideologically driven suffering at the hands of the Conservatives, the discriminatory tone of many lockdown sceptics has been a hard pill to swallow. Do not resuscitate letters are still being sent out.

When my brother gets his jab this week, I will be over the moon. It brings me one step closer to seeing his smiling face – it has been more than a year now since I have been able to visit. But I will also think of all the families who are not so lucky, and of those vulnerable people in care homes who, like Frances, caught Covid unnecessarily while they were waiting for a vaccine. I cannot imagine the fear and fury that Frances, Jo and her family are feeling. As ever, being disabled means having to continually fight the system. It’s exhausting and it’s unfair, and people will die because of it.

 

European Space Agency: Astronaut Recruitment Drive For Greater Diversity

February 17, 2021

The European Space Agency says it wants to recruit someone with a disability as part of its call for new astronauts.

Esa will be accepting applications in March to fill four-to-six vacancies in its astro corps but it wants this draft process to be as inclusive as possible.

The search for a potential flier with additional functional needs will be run in parallel to the main call.

The agency has asked the International Paralympic Committee to advise it on selection.

“To be absolutely clear, we’re not looking to hire a space tourist that happens also to have a disability,” said Dr David Parker, the director of Esa’s robotics and human spaceflight programme.

“To be very explicit, this individual would do a meaningful space mission. So, they would need to do the science; they would need to participate in all the normal operations of the International Space Station (ISS).

“This is not about tokenism,” he told BBC News. “We have to be able to justify to all the people who fund us – which is everybody, including people who happen to be disabled – that what we’re doing is somehow meaningful to everybody.”

Individuals with a lower limb deficiency or who have restricted growth – circumstances that have always been a bar in the past – are encouraged to apply.

At this stage, the selected individual would be part of a feasibility project to understand the requirements, such as on safety and technical support. But the clear intention is to make “para-astronauts” a reality at some point in the future, even if this takes some time.

Esa is on a big diversity drive. On matters of gender, for example, it has lagged seriously behind.

Only one of its current crop of astronauts is female (Samantha Cristoforetti); likewise only one of its senior directors is a woman (Elodie Viau in telecoms). And in those leading positions on robotic space missions – the project scientist and project manager – the vast majority are still men.

Just 16% of applicants to the last Esa astronaut call in 2008 were female. The agency wants to see that increase dramatically this time around. Applications are being accepted from 31 March to 28 May.

To qualify, candidates must have a master’s degree (or higher) in Natural Sciences, Medicine, Engineering, Mathematics or Computer Sciences, or be qualified as an experimental test pilot.

“They need to be fluent in English with a good knowledge of a second language. It doesn’t matter what that second language is, but it must be a second language,” said Lucy van der Tas, Esa’s head of talent acquisition.

The ability to speak Russian – the other language used on the space station – will be part of the training programme.

The recruitment process should see at least four individuals go straight into the Esa astronaut corps, which is based in Cologne, Germany.

A further 20 candidates will additionally go into a reserve.

They will be contracted to make themselves available for call-up, either because of retirements among the existing astronauts or because individual Esa member states want to run a national mission to the ISS.

This is now possible because the American aerospace companies SpaceX and Boeing will be selling seats in their new crew capsules on a commercial basis.

If the member state purchased this opportunity, Esa would train up their national candidate in the reserve pool.

The successful candidate that has a disability will also go into a reserve. Esa will then work with its partners on the ISS to find the best way to fly a para-astronaut.

“We did not evolve to go to space so when it comes to space travel, we are all disabled,” said Samantha Cristoforetti. “What brings us from being disabled to go to space to being able to go to space is just technology. This is a feasibility study and we’re going to look into what exactly is needed, how much it will cost – but that’s the goal.”

The last astronaut selection process saw Frenchman Thomas Pesquet; Italians Samantha Cristoforetti and Luca Parmitano; Germany’s Alexander Gerst; Denmark’s Andreas Mogensen; and the UK’s Tim Peake join the corps in 2009. Germany’s Mathias Maurer – an “also suitable” – joined up in 2015.

Tim Peake’s selection raised some eyebrows at the time because the UK back then did not help fund Esa’s human spaceflight programme. But the agency stresses that applications are accepted from all its member states, irrespective of national funding decisions.

Of the new call, Tim Peake told BBC News: “We’re involved in the Artemis programme, which will send humans back to the surface of the Moon, and that’s a gateway to Mars. So this [draft] could be recruiting the first Europeans who will set foot on Mars.”

‘Disturbing’ Hallucinations Increase During Lockdown For Blind People

February 16, 2021

Lockdown has seen a “disturbing” rise in the number of blind people experiencing distressing hallucinations, the RNIB charity says.

The condition, known as Charles Bonnet syndrome (CBS), causes patients to have vivid hallucinations.

False images are triggered when the brain tries to fill in the gaps caused by sight loss.

The RNIB said calls to its helpline had increased by almost 50% and patients had reported more sinister visions.

CBS is thought to affect up to 30% of those with sight loss, although it can sometimes be confused with mental health concerns.

‘Pool of blood’

Recently, Coronation Street highlighted CBS after Johnny Connor – landlord of the Rovers Return pub – experienced disturbing visions of cockroaches, mice and his dead son.

He became increasingly concerned about his mental health until, in Monday night’s episode, he was diagnosed with CBS after visiting a doctor while in prison.

Kirsty James, 31, from Caerphilly has been registered blind since she was 13 and says she first experienced an hallucination about a decade ago.

“I looked down and saw a pool of blood around my guide dog. I screamed out – ‘my dog’s paws are bleeding’ – but when I touched them there was nothing there. I was mortified.

“I didn’t talk about it for so long – I was ashamed and embarrassed. I had been having hallucinations for a year before I told my husband.

“But it helps to talk about it – makes it less scary.”

Judith Potts who runs Esme’s Umbrella, a support group for people with CBS, says shame can sometimes stop people seeking help.

“People who develop it think immediately they’ve developed a mental health condition,” she says.

“So they don’t confide in anyone and they live in their world of uninvited images, it’s utterly terrifying.”

Nina Chesworth, 38, from Manchester developed CBS when she lost her vision and experiences a variety of hallucinations.

“When I’m feeling calm I have colourful patterns and bubbles – like a lava lamp – and sometimes cartoon characters or unicorns. Mickey Mouse is a frequent visitor.

“But when I’m more anxious, upset or angry, I find they morph into scarier images. Ghost faces or zombie faces appear a lot. I’ll often see eyes staring at me.

“When I finally got a diagnosis it was was so nice to hear someone say: ‘This is a condition’. But it was still a big pill to swallow, and it still affects my life.”

Research by University College London found half of patients with CBS had found their hallucinations had become more sinister during lockdown and more than 50% said they were more frequent.

‘It scared me’

Professor Mariya Moosajee, one of the researchers and a consultant Ophthalmologist, said: “The main triggers are loneliness, reduced exercise, exposure to chronic depressing news – all things we are seeing in lockdown.”

The Royal National Institute of Blind People (RNIB) said its helpline now received more questions about CBS than any other condition, including cataracts.

Keith Valentine, director of development at the RNIB, said: “The numbers are disturbing because we know lots of people are coping with this alone and not getting diagnosed.

“I get hallucinations myself and whilst I’m a confident blind person it scared me when the hallucination was staring at me through the window.

“If you’re going through this, you’re not alone.”

Mr Valentine advised anyone experiencing hallucinations to contact the RNIB.

Rachel Johnston: ‘She Was A Young Woman And Her Life Was Taken Away’

February 16, 2021

The mother of a disabled woman who lay “slowly dying” while nursing staff failed to raise the alarm says she hopes her death was not in vain.

Rachel Johnston, 49, fell seriously ill after having an operation to remove all her teeth due to severe decay.

A coroner found neglect by nurses at Pirton Grange Care Home, near Worcester, contributed to her death.

“She had a wonderful little life and it was taken away from her,” said Diana Johnston.

Miss Johnston, who suffered brain damage after contracting meningitis when six weeks old, lived at Pirton Grange from 2013 where she should have been able to have 24-hour medical care.

Always singing, she was a popular resident.

“She was such a happy young woman and loved life,” her mother said. “She loved a party and she loved people. She was the soul of everything.”

There was little Miss Johnston could do for herself, including brushing her teeth. After a lifetime of difficulty, a dentist examined her in 2018 and discovered every one needed to be removed because of the risk of infection.

A ‘full dental clearance’ is a major procedure for any individual, not least someone with profound learning difficulties.

Questions have been raised about the procedure with campaigners saying they are often told of poor communication between disabled patients and their families, and that dentists should intervene earlier to avoid taking out every tooth in a person’s mouth.

Miss Johnston was given a local and general anaesthetic at Kidderminster Hospital and underwent the procedure on 26 October that year. She was discharged four hours later after appearing in high spirits once she’d come round.

But, as she arrived back at the care home that evening, Miss Johnston fell asleep. Over the next 42 hours, she bled intermittently from her mouth, was seen making “gurgling noises” and never fully woke up.

Despite this, two nurses responsible for her care failed to carry out basic physiological tests that would have showed Miss Johnston was struggling to breathe. Neither did they keep records of her condition that would have shown she was deteriorating.

By the time an ambulance was called at 14:00 on 28 October, a doctor said her “entire brain had been starved of oxygen”.

The evidence and findings of Miss Johnston’s four-day inquest have been “heartbreaking”, her mother said.

“I put all the trust in the world in Pirton Grange. When Rachel went there, she was in their arms. They should have seen something was wrong but they didn’t do anything for her when she needed it,” said Mrs Johnston.

“That’s when my daughter was slowly dying. She never had a chance. They just didn’t seem to care.”

The inquest heard if Miss Johnston had been taken to hospital the previous night, she probably would have survived.

Coroner David Reid said the actions of agency nurses Sheeba George and Gillian Bennett amounted to “gross failures” and that neglect contributed to her death along with complications from surgery.

A hearing on 23 February will hear what changes have been made at Pirton Grange since Miss Johnston’s death, 10 days after her family agreed to switch off her life support machine. The home said in a statement systems had been altered and staff retrained.

With Miss Johnston falling amongst 1,200 avoidable deaths of people with learning disabilities each year, her mother hopes that lessons can be learned.

“So many die needlessly every year. I just hope that people learn from Rachel’s story – she was a young woman and her life was taken away unnecessarily.

“We fought for this because we knew they were in the wrong. We just hope that no one else has to go through what we have.”

Despite the heartache, Mrs Johnston said she and her family were relieved to finally have answers after two and a half years in the dark about how she died.

“When we went to the cemetery on Friday I just said to her – justice has been done, Rachel.”

‘Urgent matters’

Dan Scorer, head of policy at Mencap, said: “It’s already shocking that in the 21st century anyone with a learning disability should be facing removal of all their teeth.

“But it is devastating that Rachel’s subsequent deterioration wasn’t picked up until it was too late to save her. The failures in basic nursing care for Rachel at the care home should now be urgent matters for both the care regulator and Nursing and Midwifery Council to address.

“Everything needs to be done to make sure we never see a case like this again.”

Covid-19: Millions Of Asthmatics ‘Must Wait For Vaccine’

February 16, 2021

People whose asthma is under control will not be prioritised for the Covid vaccine, the government has confirmed.

Sufferers of the condition will not be on the list ahead of their peers unless they are formally shielding, regularly take steroid tablets or have ever had an emergency hospital admission.

This appears to be a rowing back from previous guidance indicating steroid-inhaler users would be eligible.

It has since been judged this group is not at increased risk of death.

The Department of Health and Social Care (DHSC) said it was following independent advice that the immediate priority should be to “prevent deaths and protect health and care staff, with old age deemed the single biggest factor determining mortality”.

A DHSC spokesperson said: “This prioritisation captures almost all preventable deaths from Covid-19.”

People with non-severe asthma are considered by the NHS to be at increased risk from Covid – but not at risk of dying from the virus.

Asthma has also been linked to an increased risk of “long Covid” – an array of different symptoms suffered by some people weeks or months after the initial infection has cleared.

Anyone with the condition requiring a steroid inhaler or tablets will be offered a free annual flu jab. And that’s led some people to question why they are being treated differently when it comes to Covid where only oral (tablet or liquid) steroids are considered.

vaccine priority list

Jeff Hunt, a 50-year-old from Somerset, said his moderate asthma had not required hospitalisation for the condition because he had been “extremely cautious” – but that didn’t mean his condition didn’t put him at risk.

“I’m really frustrated with the government guidance being so unclear,” he said. “It doesn’t feel like it makes sense.

“We’re all being called for an annual flu jab but now we’re being told we’re at no greater risk than the average population,” he added.

However, Asthma UK said the government had assessed evidence suggesting people with mild or moderate asthma, even those using high doses of inhaled steroids, were not at greater risk of dying.

A study tried to correct for this behavioural effect – the fact people with asthma may have been particularly careful – by only looking at the outcomes of people with asthma who had contracted Covid.

The most severe asthma sufferers will be vaccinated in the fourth priority group if they have received a letter advising them to shield.

People with asthma will be vaccinated in the sixth priority group, after the over-65s and frontline staff, if they:

  • Have ever had an emergency asthma admission, or;
  • They have had three oral (tablet or liquid) steroid prescriptions over a three month period

The first five groups cover care-home residents and staff, over-80s and front-line health and care workers, the over-75s, “clinically extremely vulnerable” people (shielders) and the over-65s.

There are nine priority groups in total, which the government says it will offer a first jab to by the end of April – including all over-50s regardless of health status.

The next set of priority groups has yet to be laid out.

But it is expected to include people with both a wider range of health conditions and in a broader group of occupations, like police officers and teachers.

Sarah Woolnough, chief executive of Asthma UK and the British Lung Foundation, said: “The government have advised people with asthma that they are clinically vulnerable to Covid, throughout the pandemic, leaving many people to believe that they were going to be in priority group six for the vaccine.

“However, based on evidence that a lot of people with asthma are at no increased risk of dying from coronavirus, it has changed the eligibility for category six, which means many people with asthma no longer fall into this group.”

She added: “The government must urgently communicate directly to people with asthma why it has made this decision, and explain the reasoning behind it.”

The charity is calling for people with non-severe asthma to be prioritised ahead of their peers after the first nine groups have been vaccinated.

“The government’s lack of attention, urgency and confused messaging around this issue from the start of the pandemic has caused needless anxiety for people and it needs to be put right,” she said.

Fury At ‘Do Not Resuscitate’ Notices Given To Covid Patients With Learning Disabilities

February 15, 2021

People with learning disabilities have been given do not resuscitate orders during the second wave of the pandemic, in spite of widespread condemnation of the practice last year and an urgent investigation by the care watchdog.

Mencap said it had received reports in January from people with learning disabilities that they had been told they would not be resuscitated if they were taken ill with Covid-19.

The Care Quality Commission said in December that inappropriate Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notices had caused potentially avoidable deaths last year.Advertisementhttps://eb3ca1ecd275ae49142ae247f5e428af.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

DNACPRs are usually made for people who are too frail to benefit from CPR, but Mencap said some seem to have been issued for people simply because they had a learning disability. The CQC is due to publish a report on the practice within weeks.

The disclosure comes as campaigners put growing pressure on ministers to reconsider a decision not to give people with learning disabilities priority for vaccinations. There is growing evidence that even those with a mild disability are more likely to die if they contract the coronavirus.

Although some people with learning disabilities such as Down’s syndrome were in one of four groups set by the Joint Committee on Vaccination and Immunisation (JCVI) which the government promised would be offered the vaccine by tomorrow, many were classified lower categories of need and are still waiting.

NHS figures released last week show that in the five weeks since the third lockdown began, Covid-19 accounted for 65% of deaths of people with learning disabilities. Figures from the Office for National Statistics show that the rate for the general population was 39%, although the two statistics are drawn from different measurements.

Younger people with learning disabilities aged 18 to 34 are 30 times more likely to die of Covid than others the same age, according to Public Health England.

Edel Harris, Mencap’s chief executive, said: “Throughout the pandemic many people with a learning disability have faced shocking discrimination and obstacles to accessing healthcare, with inappropriate Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notices put on their files and cuts made to their social care support.

“It’s unacceptable that within a group of people hit so hard by the pandemic, and who even before Covid died on average over 20 years younger than the general population, many are left feeling scared and wondering why they have been left out.

“The JCVI and government must act now to help save the lives of some of society’s most vulnerable people by urgently prioritising all people with a learning disability for the vaccine.”

More than 14m people have received a first vaccine dose so far, and care providers who spoke to the Observer said many people with learning disabilities had been vaccinated in the last week. But some are still waiting. One woman from the West Midlands who has a rare form of Down’s syndrome told the Observer she had not yet been given a date.

“It’s really frustrating – it’s been a fight and it shouldn’t have been a fight,” she said. Her condition means she is in category four – people who are clinically extremely vulnerable – but her GP did not have details of her condition on record – a common problem, according to Mencap.

“I had to call them lots of times,” she said. The practice accepted last week that she needed to be vaccinated, she said, but she was still waiting. “For people in a similar situation to me, they won’t have been badgering them as much as me.”

A lack of badgering is part of the reason why people with learning disabilities may be more likely to die from Covid-19 than the rest of the population, according to Dr Keri-Michèle Lodge, a consultant in learning disability psychiatry in Leeds.

“Doctors often don’t understand that someone with learning disabilities may not be able to communicate their symptoms,” she said. “Carers are sometimes not listened to – you might notice something is wrong, but that is often written off as part of their behaviour.

“People with learning disabilities already get a raw deal from the health services. Fewer than two in five people with a learning disability live until they are 65.”

An analysis by the Office for National Statistics last week showed that six in 10 Covid deaths were of people with a disability.

“The biggest factor associated with the increased rate of death from their analysis was living in care homes or residential settings,” Lodge said. “They prioritised people in care homes for vaccinations, but that was only for older adults. They completely forgot about people with learning disabilities in a really similar setting. I don’t know if the government were blindsided or just neglectful.

Professor Martin Green OBE, Care England’s chief executive, said: “As the largest representative body for independent providers for adult social care, Care England remains concerned that the government has not given individuals with a learning disability a higher level of priority for the Covid vaccine.

“We urge the government to remove the arbitrary distinction between prioritising those with a severe or profound learning disability and those with a mild or moderate learning disability, and prioritise all those with a learning disability in priority group four. People with learning disabilities must not be overlooked at any time.”

A spokesperson from the Department of Health and Social Care said: “It is completely unacceptable for ‘do not attempt CPR’ decisions to be applied in a blanket fashion to any group of people. This has never been policy and we have taken action to prevent this from happening.

“We have asked the CQC to undertake a review of notices issued during the pandemic. This review has started and will report later this year. As this proceeds, we will continue to work across the health and care system to address the issue.”

‘An Existential Threat’: Disabled And Chronically Ill Californians Criticize Vaccine Policy

February 15, 2021

Disabled and chronically ill Californians say that the state’s coronavirus vaccine distribution is leaving them in the lurch, as the death toll in the country’s most populous state continues to climb.

California abruptly announced last month that it was changing its vaccination policies to prioritize age, rather than underlying risk, in deciding who will get the inoculation next. The state is currently giving vaccines to people who are 65 years or older, nursing home residents and workers in healthcare, education, childcare, emergency services agriculture and food services. It had originally intended to vaccinate workers in transportation and manufacturing, people who are incarcerated, disabled people and people with high-risk medical issues next.

But in January, Gavin Newsom, the governor, argued prioritizing age would speed up the state’s lagging vaccine distribution. It “will allow us to scale up much more quickly to get vaccines to impacted communities much more expeditiously”, the governor said, by making it easier for officials to determine who is and isn’t eligible.‘Please send more vaccines’: Covid crisis engulfs California’s farming heartlandRead more

Advocates for disabled and chronically ill Californians have pushed back fiercely, criticizing the change of plans as a reactionary move that has left people with a range of physical and developmental disabilities and medical conditions uncertain and confused about when their turn will come. They have called on the state to change course, and reprioritize high-risk Californians – including disabled people, workers and people in prisons.Advertisement

Health officials have since signaled that they will announce a plan this week to give vaccines to some Californians with disabilities, but advocates said they are prepared to be disappointed. “We haven’t been getting any clear answers,” said Andy Imparato, the executive director of Disability Rights California. Imparato has been attending meetings with the Community Vaccine Advisory committee, a panel of experts and stakeholders, about the distribution plans.

“I know [officials] are trying to pay more attention to equity, and they’re including disability in those conversations about equity – but I don’t have confidence that we’re going to get a specific timeframe anytime soon for when people can get vaccines,” Imparato said.

He understands the need to simplify and speed up the vaccination process, he added, and that the state is short on doses. “All I’m looking for is simplicity and clarity – a plan,” he said.

 

California’s policy is a departure from national guidelines outlined by the Centers for Disease Control and Prevention, that recommend people of all ages with high-risk conditions get vaccinated first.

For Charis Hill, 34, a disabled activist based in Sacramento who lives with an autoimmune disease and takes medications that suppress their immune system, the announcement felt “like further evidence that nobody cares about disabled people”.

“It pissed me off, along with millions of other disabled people in California,” they said.

The news, which came a year into a pandemic that has disproportionately infected and killed disabled people, either because of their frequent exposure to caregivers and health workers or because of suppressed immune systems and other complications, has shaken Hill and other advocates.

“The decision to not prioritize disabled and high-risk people is essentially a death sentence,” said Hill.

Hill was worried about catching common viral infections even before the pandemic struck – for them a mild flu could turn into life-threatening pneumonia. For the past year, they have not left their house other than for unavoidable doctor’s appointments. “My in-person social interaction is almost all in the doctor’s office,” they said. “That’s the only time I touch a person, because it’s medically necessary.”

More so than physical isolation, Hill said they have felt a sort of “social and cultural isolation, from just being continually left out of the conversation and left out of planning for public safety and public health”.

The vaccine distribution across the US has been slow, and at times faltering – due in part to the limited quantity of vaccines. As the Biden administration works to speed up the process, many residents have questioned why California is trailing behind states with fewer resources, including Utah, the Dakotas and West Virginia, in administering the doses it has been allocated.

Alice Wong, a disabled activist in San Francisco, worries about the consequences the pandemic will have on disabled and chronically ill Californians. Photograph: Talia Herman/The GuardianAdvertisement

Both Utah and South Dakota have prioritized some or all residents with high-risk conditions above the general public – and South Dakota has begun to give vaccines to people with high-risk medical conditions and disabled people living in group homes, alongside the elderly. Based on California’s current policy, disabled and chronically ill people under the age of 65 may not receive a coronavirus vaccine before the summer.

Alice Wong, a disabled activist based in San Francisco who uses a ventilator and home care attendants full time, said she worries about the permanent consequences that the pandemic will have on Californians who have not been able to leave their homes, and have delayed medical care and treatments for fear of catching the virus. “Not having the vaccine is an existential threat,” she said. “It’s a form of violence against disabled people. It’s eugenics.”

Wong said she doesn’t understand why Newsom’s government could not deliver the vaccine both efficiently and equitably, given that officials had a year to plan and prepare for it. “It angers me that it had to get to this point,” she said.

The governor’s office did not directly respond to a request from the Guardian for a comment, nor did the state’s Covid-19 vaccine taskforce. In a press conference on Monday, Newsom said the state would “take care of the most vulnerable and people in the developmentally disabled community” but added that “whatever we do will not be enough until the [vaccine] supply is adequate”.

Kristen Lopez, a Los Angeles-based entertainment journalist in her 30s with brittle bone disease, said the state’s initial tiered vaccine policy was far from ideal, “but at least it was understandable in some way. There was at least a timeline,” said Lopez.

Her mother, who is Lopez’s in-home healthcare provider, was part of the first tier of care providers who qualified for the vaccine. “As she was saying, it doesn’t make sense that care providers are able to get it, but not all the vulnerable people they’re caring for are.”

“At this point,” Lopez added, “it all just seems arbitrary.”

Being active – good for the mind and the body!

February 15, 2021

This is a guest post.

I recently read about an amazing young man named Oliver Voysey and his efforts to raise more than £178,000 for the activity centre that taught him “nothing is impossible”.

Oliver is just 12 years old and suffered a brain injury shortly after birth. He and his family regularly travelled to the Calvert Trust in the Lake District, an activity centre for both children and adults with disabilities. The Calvert Trust, like many similar activity centres around the country, is facing financial difficulties as a result of the Covid-19 pandemic.

As a solicitor who acts for children who have suffered brain injuries, I am familiar with the crucial work carried out at this type of activity centre and the benefit this has for the children and their families. Children with brain injuries can attend the centres and engage in a wide range of accessible activities in a safe environment with skilled support from people who are experienced in caring for those with disabilities.  

Whether it be climbing, abseiling, caving, canoeing, sailing, cycling, dance, painting, archery, swimming or horse riding (to name just a few of the amazing activities offered!), children who have suffered brain injuries deserve to have the same access and facilities to engage, enjoy, learn and thrive from these activities. Activity centres provide specially adapted equipment and a safe environment for children of all abilities to take part in activities that might otherwise be inaccessible to them.

And it’s not just about having great fun; there can be huge benefits to brain-injured children and their families:

  • Activity and play is essential to a healthy lifestyle for all children. Activity centres allow brain-injured children to exercise in an accessible environment.
  • They provide a safe environment to develop their skills e.g co-ordination, balance, communication, mobility, decision making, self-regulation and independence.
  • Children with brain injuries can socialise with their peers and enjoy activities together, allowing them an important sense of inclusion and a great opportunity to build their social skills.
  • Just like Oliver, who believes that “nothing is impossible”, engaging in physical activities helps boost self-esteem, confidence and resilience in children who have suffered brain injuries.

I have also had the opportunity to visit Penniwells Riding for the Disabled Centre, an activity riding centre for disabled children and adults, where I learnt about the benefits of riding to children with brain injuries. Riding demands physical and mental concentration. It develops balance, promotes core strength and can relax tight muscles, common in children with certain types of Cerebral Palsy, through gentle movement.

Sadly, many of my clients and their families have really struggled throughout the pandemic. Restrictions have meant that they have been unable to engage in their usual rehabilitative activities. Many children who would usually receive crucial support, care, therapy and education from people who are specialists in caring for those children with brain injuries have not been able to. This has left their families in the challenging position of fulfilling all of these roles. This can leave little time to just be a family together!

Further, activities centres have had to remain closed and are now facing financial difficulties as a result. If the centres do not receive the funding they need to stay afloat and reopen when restrictions allow them to do so, some may end up closing for good. This would be devastating to those children and their families who use them, which include some of my clients.

I am in awe of Oliver and his fundraising efforts as well of those around the country who have donated and continue to raise funds to support disabled activity centres through this difficult time. I also hope that the Government and Local Authorities ensure that adequate support is in place to ensure that the centres can reopen for children with brain injuries to continue to benefit from.

Mollie Benjamin, Senior Solicitor in the Brain Injury Team at Bolt Burdon Kemp.

LETTER TO EDITOR: Revitalise share the love of some of their guests this Valentine’s day

February 12, 2021

At a time when there is seemingly much darkness in the world, I’d like to take a moment to share some special words with your readers from Revitalise. As an organisation who usually specialise in providing fantastic holidays and great times for disabled people and their carers, it will come as no surprise that our guest’s happiness means a great deal to us. That’s why, this Valentine’s Day, we want to share a few stories of love, which blossomed at our respite centres.

Finding love is something most of us hope for, but dating with a disability (or when you’re a busy carer) can be really challenging.

Carl Ashcroft and Tracey Stewart first met 15 years ago at Revitalise Sandpipers. They became friends and started to regularly coordinate their visits to the centre, before becoming a couple. In June 2015, we were delighted to witness a very special occasion as Carl took their relationship to the next level, proposing to Tracey at the place where it all began.

Carl said “I really wanted to be surrounded by friends when I asked for Tracey’s hand. Tracey was very surprised but thankfully she said “yes”. Then we had the last dance of the night together.”

“I am very happy”, said Carl to summarise, “so very happy”.

Mavis and Colin’s marriage dates back to 1960, having met at a dance hall and getting married before they were even 18. Mavis became ill with Multiple Sclerosis and Colin cared for her full time, until he was diagnosed with dementia. Mavis said she missed all the things they did before Colin’s dementia got worse and was always wondering when it would be that Colin wouldn’t recognise her.

She said I didn’t know anywhere like Revitalise existed where so much was done to make a break so enjoyable. At Revitalise Colin had been getting up and talking to people, something he hasn’t done for a long time.

“The fun and the laughter was exactly what we needed to get back to who we used to be. We look after each other. We have been married 57 years and are best friends, lovers and partners. Revitalise was just the icing on the cake of our life together so far.”

Revitalise are still welcoming disabled people and carers to Revitalise Sandpipers in Merseyside, for those that have not not been able to access a respite break for nearly a year due to the pandemic. We have funding available and can also provide transport across the country. Anyone who feels they could benefit from our support, only needs to ask.

Devon Prosser, Revitalise
www.revitalise.org.uk  

Charles Hazlewood: Beethoven And Me

February 12, 2021

A multi-talented musician who was once the drummer in a band, Charles Hazlewood has conducted orchestras around the world, taken opera to the townships and villages of South Africa, and founded Paraorchestra, who performed alongside Coldplay at the 2012 Paralympics and have played at Glastonbury. In a new TV documentary, Beethoven and Me (Sky Arts), Hazlewood explores his own obsession with Beethoven, the composer’s mental health and his most famous work, the Fifth Symphony.

We’re on Zoom. I can see blue tiles, a glass ceiling and hundreds of books. It looks as if you’re in a swimming pool library.
That’s nearly right! When we moved to this house in Wells, Somerset, there was a disused pool in a shed in the garden. I realised the combination of wood, ceramic and glass would make a fantastic acoustic for a studio. It’s been a godsend In lockdown. I’ve got my piano, harmoniums, organ, synthesiser, all my vinyl and scores out here. And a wood-burning stove. It’s a joyous place to dream and scheme.Advertisementhttps://22dd77580bf3c028a1a06bab2b9f2607.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

In your TV documentary, you identify closely with Beethoven, which might be considered risky.
You’re dead right, there could be a great level of hubris in trying to suggest that somehow I breathe the same air as Beethoven. I’d never in a million years claim that. However, from when I was a child, aged seven, and got my first Beethoven record – his Archduke Trio, an amazing, compelling piece of music – I’ve had the most tormented and complex and feverish and uncertain and bloody relationship with his music, more so than with any other single artist or music that exists. I was totally obsessed. I’ve performed his work around the world, but always with this fringe dis-benefit, that the process of preparing it takes me somewhere to hell and back – a very bloody, dark, feverish place. It’s as if we, he and I, fight like dogs over the material. The payoff is the ecstasy that comes with performing it.

When you appeared on Desert Island Discs last year, you “came out” – your phrase – as having suffered abuse as a child. Is this key to the documentary?
Yes. My own abuse was sexual. With Beethoven it was brutal, physical, from his violent father. As I began to understand better my own experience, the penny dropped: when you encounter someone else who has been abused – and since Desert Island Discs I’ve received hundreds of letters from like-minded people – it triggers recognition. So many of us are carrying around this dark sump oil buried somewhere within, like a slick, a reservoir. It needs to be talked about, brought out in the open. Whatever the form of abuse, certain similar patterns emerge.

How does this relate to Beethoven?
With Beethoven, in literally every bar, I can smell the hallmarks of abuse. I’ve always had the hunch that Beethoven’s difficulties in life – his mood changes, his personality problems, the way the music works – were about so much more than deafness. I know plenty of deaf people, some of whom are the most gregarious types you’d hope to meet. With Beethoven there’s something more. It’s loud and clear in the Fifth Symphony, and especially when you look at the sketches. At times, his nib goes through three pages of manuscript as he scratches things out. They reveal a man in deep torment, going near insane with frustration. That’s what we explore in this film.

You work with players from Paraorchestra… The Paraorchestra is the world’s first fully integrated orchestra of professional, disabled and non-disabled musicians. I set it up when my daughter, the youngest of my four children, was diagnosed with cerebral palsy, aged 18 months. Her condition made me acutely aware that we ignore so many brilliantly talented people who happen not to fit the standard mould. Some in the orchestra play traditional instruments, others use assisted technology, laptop players – every kind of musician, every kind of music, from Beethoven to Suede to Barry White.

These players are the lucky few, who’ve managed to fight through prejudice and get top-level training. The music industry is in the dark ages in this regard. This is a first step. Even in the UK, a country enlightened towards matters of disability, there are still concert halls where a wheelchair user can’t access the stage. How many conservatoires can teach assisted technology? That’s how fundamental the barriers are. We’re still at ground zero.

You started your musical life as a chorister and then won an organ scholarship to Oxford. Is church music still part of your life?
Absolutely. I love it. I was a chorister from the age of six and it’s a brilliant training for any musician. There’s something about the sound of the organ I’ve always found irresistible. For me it all relates to the buildings, the spaces. When I was organist at Keble [College], it was wild at times. We’d get quite drunk, quite high, then sneak in the chapel at 2am. Everyone would lie on the floor while I went up and did maniacal improvisations on the organ. It was bohemian, decadent, glorious.

What’s defined lockdown for you?
In a way it’s been an amazing time for me. For 30 years I was basically touring the world most of the time, conducting different orchestras. For the first time, I wasn’t doing that. It was like a shedding of skins. Now I’ve realised I don’t want to go back to it. I’ve parted company with my agent and with the orchestras I was working with. All my energies now will go into the Paraorchestra.

Does that mean you’ve detached yourself from the post-Brexit travel issues musicians now face, with the current row over permit requirements?
On the contrary. I’m massively passionate about that. I’ve signed every bloody petition I can lay my hands on. I desperately want the government to sort this out. What are they thinking? Music is virtually our greatest national, and commercial, export. To make it so hard for musicians to travel beggars belief. It makes me want to kill people, actually.

What are you listening to, to keep you sane?
Krautrock, for a start: the German band Faust – pagan sacrifice mixed with the most delicate, meditational music. And the English band Japan. And I’ve got a big obsession with drone music. It’s been a lifelong comfort blanket for me. If everything in life feels precarious, having a fixed pitch which doesn’t yield or bend, whatever’s going on around it, is enormously reassuring. You’re rooted. You’re safe.

Charles Hazlewood: Beethoven and Me is on Sky Arts on Tuesday 16 February, 9pm

ONS Reveals Shocking Stats On Disability, Covid And Death

February 11, 2021

Every single human death is a tragedy. These statistics are not surprising, since we have known the higher risk to people with underlying conditions from the very beginning. However, they do highlight the importance of protecting all disabled people from Covid through first shielding and then vaccination.

Lockdown DJ With CP Has Found Purpose

February 11, 2021

A man with cerebral palsy says he is “loving every single minute” of DJing on video calls for other people with disabilities or those who feel isolated.

Matthew Williams, from Wrexham, said he hoped that once lockdown was over, he would be able to host discos in person.

“The buzz I get from it is unbelievable. It’s not about me, it’s about everyone else, dancing and having fun,” he said.

His mother, Wendy Williams, said his venture had “changed his life and ultimately ours” and that “Matthew has found a purpose “.

LETTER TO EDITOR: Britain’s carers must be prioritised for COVID vaccine or NHS will face disaster, Revitalise say

February 11, 2021

I’d like to take a moment to share some important words with your readers from Revitalise. As an organisation which specialises in providing respite support to disabled people and their carers, we have taken it upon ourselves to ask the Government to prioritise the vaccination of Britain’s army of home carers or risk the NHS becoming overwhelmed if they catch COVID-19.

We are trying to get the message out there that without immunisation at the earliest possible opportunity, carers will no longer be able to perform their caring duties and our hospitals will be inundated. One family carer contracting the virus means at least two people needing extra support, doubling the impact.

We made the plea after the Downing Street press conference on Monday evening in which Health Secretary Matt Hancock claimed the Government was looking “very closely” into where unpaid carers fit in the vaccine prioritisation list, following input from Carers World claiming that unpaid workers still don’t feel recognised.

Whilst unpaid carers are labelled as priority group 6 for the COVID vaccine – recognising the important role they play in supporting the NHS – the reality is that many carers have still not been offered the vaccine, despite many being the sole provider for their loved ones.

There are an estimated 13.6 million unpaid carers in the UK today, of which 4.5 million became carers since the pandemic began. These carers provide vital support, often around the clock, relieving enormous strain from the NHS.

One carer, Hilary, has been looking after her disabled son, Shaun, for 15 years following an accident during a holiday in Ibiza, despite herself having emphysema, chronic kidney disease, and a problem with her aortic valve. Hilary has faced enormous challenges since the start of the pandemic, and has yet to be offered the COVID-19 vaccination. She is forced to turn down any care support she is offered, as she knows it increases the risk of her or Shaun catching the virus.

We would like your readers to know that we are welcoming disabled people and carers through the doors of our Revitalise Sandpipers centre in Merseyside, in an attempt to circumvent some of the immense pressures facing unpaid carers, who have not been able to access a respite break for nearly a year due to the pandemic. We have funding available to subsidise your break, and can also provide transport across the country.

The pressure is continuing to build for these carers, with no end in sight. Anyone who feels they can benefit from our help, only needs to ask.

Devon Prosser, Revitalise
www.revitalise.org.uk  

George Julian- Live Tweeting LD Inquests

February 10, 2021

George Julian is crowdfunding to attend coroners’ courts and live-tweet the inquests of people with learning disabilities and autism.

She says she does this to bear witness to those individuals and to raise awareness of how they died.

In the UK, people with learning difficulties tend to die more than two decades younger than non-disabled people.

Campaigners say many of these deaths are preventable, and come about because of poorly-managed care.

A Global Report On Disability Rights During The Pandemic

February 10, 2021

This might be of interest to some of you.

PIP Reading And Budgeting Points For Claimants With Apparently Good Literacy And Numeracy

February 10, 2021

With many thanks to Benefits And Work.

 

An upper tribunal judge has made findings which will help some claimants show they qualify for PIP points for difficulties with reading and with budgeting, even if they have an apparently high standard of literacy and numeracy. The claimant was represented by an advice worker who also volunteers for Benefits and Work. 

Reading
The claimant in this case was assessed as being ‘borderline on the learning disability range’. It was found she could read simple words, recognise road signs and fire escape signs and recognise the packaging of her medication.On this basis a tribunal found that she could read and understand basic and complex written information and therefore scored zero points for the activity Reading and understanding signs, symbols and words (see the list of descriptors for reading and budgeting at the bottom of this article)..

The legal definition of ‘basic written information’ for PIP is signs, symbols and dates written or printed standard size text in your native language.

‘Complex written information’ means more than one sentence of written or printed standard size text in your native language

The judge held that the descriptors clearly require an ability to read some actual words, not just symbols and numbers. So, the claimant would need to be able to read a date written as, for example ‘Friday January 31’.

The judge also held that the ‘basic written information’ in question must convey something useful, explaining that:

“basic written information”, whilst indeed basic, is nonetheless concerned with matters of real practical utility and that the bar must not be set so low in interpreting the phrase so as to be testing only an ability of no practical consequence.”

The judge ruled that the word ‘sign’ does not refer to, for example, a printed arrow meaning go to some other part of a leaflet. Instead, the definition refers to the ability to read words on a printed, rather than handwritten sign, such as ‘Caution – electric fence’ or ‘Park closes at 5.30pm’.

The judge struggled to find any way in which prompting – defined as reminding, encouraging or explaining – could be of relevance to this activity, pointing out that:

“Explaining” what a piece of basic written information is, so that the person does not need to read it, is not prompting them to read it.”

Perhaps most importantly, the judge pointed out that any reading must also be done reliably, meaning:

(a) safely;
(b) to an acceptable standard;
(c) repeatedly; and
(d) within a reasonable time period.

The judge held that “For people without difficulties in this area, reading a short sign will be almost instantaneous.”

However, many people diagnosed with conditions such as Autism Spectrum Disorder (ASD), Attention Deficit Disorder (ADD) or a processing disorder may have difficulties with visual processing, language processing, short-term working memory, concentration, focus and other issues. This may mean that whilst they have a high standard of literacy they take in written information more slowly and may process it differently and may also need to read it repeatedly in order to put it into the correct context.

Even a small delay in reading basic or complex written information would be enough to show that it takes “more than twice as long as the maximum period that a person without a physical or mental condition would take”.

Where complex written information is concerned, conditions such as language or visual processing disorders or difficulties focusing may mean claimants with conditions such as ASD or ADD have problems following meaning without repeated reading. They may also have difficulty retaining complex information for long enough to act upon it.

So, even though they would have no difficulty in reading the words aloud, for example, they are unable to understand complex written information to an acceptable standard.

Finally in relation to this activity, the judge held that ‘Cannot read or understand signs, symbols or words at all’ does not mean that the claimant cannot read any words, but that they cannot read the basic written information at issue in this activity.

Budgeting
In this case the claimant scored no points, with the first-tier tribunal finding that they could manage complex budgeting decisions unaided because, amongst other things:

“She goes to the bank to get money out. She pays different sums on two cards and her TV licence is separate. She has a direct debit to pay for a charity contribution. She did state that she asked for help in the bank. She knew she got paid every fortnight. She knew that 24 tins of dog food costs £8.50, although she claimed not to know the change. Her taxi is £3.50 and she gives the driver extra for a drink. The [appellant] exhibited a good degree of knowledge regarding her finances and how they are paid.”

As with reading, there are important legal definitions for this activity.

Simple budgeting decisions” means decisions involving –
(a) calculating the cost of goods; and
(b) calculating change required after a purchase;

Complex budgeting decisions” means decisions involving –
(a) calculating household and personal budgets;
(b) managing and paying bills; and
(c) planning future purchases;

The judge held that the requirements in the definitions are cumulative, the claimant must be able to do each of them.

So for simple budgeting the claimant must be able to both calculate the cost of goods and then calculate how much change will be given to meet the descriptor.

The judge held that calculating is not the same as knowing. In this case, the judge explained:

“The appellant is said to “know” that 24 tins of dog food cost £8.50. That is not a matter of calculation unless, for instance, 12 tins are known to cost £4.25 and the cost of 24 has to be worked out.”

For complex budgeting decisions there are, in fact, five activities that the claimant must be able to complete:

Calculating household budgets
Calculating personal budgets
Managing bills
Paying bills
Planning future purchases

The judge held that just paying bills is not sufficient, the claimant must also be able to ‘manage’ them, which could include such issues as “prioritising which bill to pay in the light of competing demands, or the need to avoid or minimise late payment charges, or the need to take stock of bills which will inevitably be coming up and to plan accordingly”.

The judge also held that:

A “household budget” may well be more complex than a “personal budget”, with housing costs, utility charges and possibly the finances of others to be factored in”.

It is clear then, that complex budgeting decisions are indeed complex.

For all the reasons given above for reading, claimants with conditions such as ASD and ADD may well take more than twice as long to make simple budgeting decisions, especially where anxiety is also a part of their condition and may be made more pronounced by being in a public space and amongst strangers.

Complex budgeting require a great deal of focused attention and the ability to think ahead about a number of different possibilities in order to make decisions to an acceptable standard and in a reasonable time period.

This will clearly be an even greater challenge for claimants with ASD, ADD or similar conditions, as these often coexist with executive function difficulties which affect organisational skills, the ability to think forward into the future and difficulties with the concept of doing things within a specific timeframe.

In many cases, claimants may have had a budgeting system, including direct debits and standing orders set up for them and would be unable to take effective action if, for example a payment into their account was delayed.

The more evidence, including examples, that the claimant can provide that they cannot reliably carry out any one aspect of these activities, the better the chance that they will eventually be given the correct award of PIP. Even if they have to go all the way to the upper tribunal to get it.

In this case, the judge is awaiting further submissions before making a final decision.

You can   download a copy of CPIP/1653/2019 from this link.

8. Reading and understanding signs, symbols and words.
a. Can read and understand basic and complex written information either unaided or using spectacles or contact lenses. 0 points.
b. Needs to use an aid or appliance, other than spectacles or contact lenses, to be able to read or understand either basic or complex written information. 2 points.
c. Needs prompting to be able to read or understand complex written information. 2 points.
d. Needs prompting to be able to read or understand basic written information. 4 points.
e. Cannot read or understand signs, symbols or words at all. 8 points.

10. Making budgeting decisions.
a. Can manage complex budgeting decisions unaided. 0 points.
b. Needs prompting or assistance to be able to make complex budgeting decisions. 2 points.
c. Needs prompting or assistance to be able to make simple budgeting decisions. 4 points.
d. Cannot make any budgeting decisions at all. 6 points.

PIP Extension Letters Closely Followed By Review Forms

February 10, 2021

With many thanks to Benefits And Work.

 

The flood of PIP award extension letters we highlighted a fortnight ago is being followed, sometimes within days or weeks, by review forms for some claimants. Others have received extension letters which wrongly reduce the length of the award and one member has warned of issues with Motability vehicles.

Last month we revealed that around 850,000 PIP award extension letters were being sent out by the DWP, with awards typically being extended for 9 months.

It seems though, that in some cases the extension letter is being closely followed by a PIP review form which may be due to be returned before the original award has even ended, leaving claimants feeling that the extension wasn’t so much of a boon after all.

One commenter told us:

Many including me rec’d an extension letter mine came last sept extending my pip award from mar 21 to Dec21. My renewal forms arrived last Thursday they needed to be back by 8/2 -a month before my original end date. Many others have had the same experience

Another said:

I had the same letter in December 2020 extending to December 2021 so heaved a huge sigh of relief as this comes in every 2.5 years usually having a month to fill out over Christmas. I received a smaller form to update my conditions and can’t believe it’s due in 3 weeks when my original PIP didn’t end till May 2021.

Yet another commentor wrote:

I received the same letter in November last year, but in December I received a further letter and the review forms which had to be completed and returned!!

A poster on the forum told us:

Good morning, please can somebody help , I had at letter in say my pip. Was to be extended for a further 12 months . Then 2 days later , I’ve had a renewal form come in

Some people are receiving extension letters which give a date earlier than the actual end of their award, seemingly shortening instead of lengthening it. One poster in the forum said:

I know other people have been receiving PIP extension letters. I have now received one, with an extension date of July 2023. However this extension date is sooner than the actual award length expiry date. Are these extensions letters with July 2023 going out to everyone automatically without the DWP checking exactly when peoples actual awards are ending?

Another commentor said:

We had stress this week. My husband got his award in 2019 for 10 years. We got this letter saying because of Covid his award will be reassessed in NOV 2022!!! Rang up and they didn’t know why as their computer said ongoing period from 2019… After a week of waiting they said a sentence was missing from the original letter!!! But all sorted and renewal date is Feb 2029. What stress! I’m sure they do it deliberately to unnerve you. All he wants is to be Ill n peace!

Another commentor warned of a different problem:

There’s a sting in the tail with these letters though. Anyone with a Blue Badge will have to re-apply for the badge and entitlement to that new badge will end at the same time as the extended PIP date. My motability car is also due for replacement but can’t be because the extension doesn’t cover a three year period. Whilst not having to worry about PIP renewal applications for a few more months, this extension is not without it’s own problems.

DWP Denies Disabled Claimants Need More Help, Despite Evidence

February 10, 2021

With many thanks to Benefits And Work.

 

The DWP has rejected the idea that disabled claimants have incurred additional costs during the pandemic, despite mounting evidence, and has refused to name a date when a long overdue report into the link between government policy and foodbank use will be published.

A report, Pandemic Poverty, released this month by the Disability Benefits Consortium (DBC) found that:

  • 82% of disabled claimants have had to spend more money than they normally would during the pandemic.
  • This is most commonly due to greater food shopping and utility bills, as over half (54% and 53%) of disabled claimants said these costs had increased significantly.
  • As a result of these increased costs, two thirds (67%) of disabled claimants have had to go without essential items at some point during the pandemic.
  • Almost half (44%) of disabled claimants are reporting being unable to meet financial commitments such as rent and household bills.

The DBC recommend that:

  • The £20 per week increase to be extended to legacy and similar benefits (and backdated to April 2020).
  • The £20 uplift to universal credit (UC) be also renewed in 2021-2, above the normal inflation uprating.

Meanwhile, a separate report by the Trussell Trust, Dignity or Destitution, is also calling on the government to keep the £20 uplift when it is reviewed next month.

Research conducted by YouGov on behalf of the Trussell Trust finds 41% of people claiming Universal Credit – representing more than 2.4m people across the UK – fear they will be very likely to cut back on food for themselves if the planned cut goes ahead in April.

13% of parents surveyed – representing more than 220,000 families – think they would be very likely to cut back on food for their children, meaning they simply would not have enough money to cover the basics.

The report forecasts an increase in the need for food banks amongst people claiming UC with 20% of people on UC -representing 1.2 million people – saying they would ‘very likely’ turn to a food bank for help with £20 less a week.

Emma Revie, chief executive at the Trussell Trust, said:

“The £20 increase to Universal Credit introduced at the start of the pandemic has been vital in protecting tens of thousands of people from being swept into serious financial hardship. This survey reveals the shocking consequences of what lies ahead if this lifeline is cut in April. This isn’t right. No one should have to suffer the indignity of relying on emergency food. It’s clear that action is needed to ensure our benefits system provides people with enough money to cover the essentials. That’s why we’re insisting the government turns this situation around. Keeping the £20 Universal Credit uplift, and extending it to legacy benefits, will provide an anchor from poverty for people who need it most.

The chances of the DWP increasing payments to legacy benefits claimants, seems slim, however.

When it was pointed out to DWP secretary of state, Therese Coffey, during a meeting of the Work and Pensions Committee last week that disabled people have borne higher costs during the pandemic, but those on ESA and JSA have not had any extra help at all, Coffey replied dismissively:

“I would not say they have been treated badly . . . I am not aware specifically of extra costs that would have been unduly incurred”

Coffey also refused to say when a report into how government policy contributes to foodbank demand would be published. It was due out in September 2019, but has been supressed ever since. Coffey’s only response was to say that:

“I do not have a specific answer on that single report, but if they are contributing to policy formation we will still have them under review.”

Coffey’s utter indifference to the plight of disabled claimants suggests there is little prospect of legacy benefit claimants receiving any additional help, without a huge surge of pressure being placed upon the government

You can download Pandemic Poverty form this link

You can download Dignity or Destitution from this link

You can download a copy of the Work and Pensions Committee meeting from this link.

Down’s Syndrome: Mother Says She Wouldn’t Change A Thing

February 9, 2021

A mother who broke down after her son was born with Down’s syndrome wants other parents of babies born with the condition to know things will be “more than okay”.

Kassie Carlyle knew “instantly” that baby Carlson had the condition when he was born in November 2017.

She said it left her feeling like she “had been punched straight in the gut”.

Now she wants to reassure other parents struggling with the same diagnosis that support is available.

The mother-of-three, 42, from St Anne’s in Bristol, still remembers how distraught she was when she saw Carlson for the first time after giving birth at Southmead Hospital.

“I went into shock straight away and I handed him to my husband and mum. I just couldn’t hold him,” she said.

“My husband didn’t notice he was any different. The pride on his face made me feel so guilty.”

She remembers feeling “floored” and asking everyone to go home.

She did not tell her husband Chris her concerns because she was afraid to “take away that happiness I saw in his face”.

She said she will “always be jealous he left the hospital a proud dad full of joy… for me it was was an upsetting moment and I didn’t want to talk to anyone”.

During their first night in the hospital, Mrs Carlyle “cried all night” while cuddling her newborn.

“I held him against my chest to keep him warm as his temperature was too low and he wasn’t well.”

She asked for Carlson to be checked the next day and a test later confirmed he had Down’s syndrome. The possibility of him having the condition had not been considered as she had not been flagged for pre-natal testing.

Mr Carlyle, 49, cried when she told him but said he thought they were “lucky, because we get to take our baby home”.

He was worried about Carlson being “an easy target for the evil in this world, but otherwise he’s his son and no different in his eyes”.

Mrs Carlyle said her family was very supportive and her mother was her “rock”.

“She told me that Carlson would be a blessing to our family and that I would see in time he was exactly who he was meant to be.”

‘Overwhelmed with fear’

Following the diagnosis, Mrs Carlyle was given “old-fashioned looking leaflets and told lots of things my tiny baby wouldn’t be able to do or what he would struggle with.

“I didn’t feel prepared at all, I felt overwhelmed with fear.”

With no positive advice on having a child with Down’s syndrome, she spent the first days feeling “broken” and was assigned a mental health nurse.

“I will always feel the guilt of feeling they were among the worst days of my life.

“I knew I loved my little boy but I was so fearful for his future.

“It was hard to tell everyone because I expected the negative reaction but… my family and friends all came to the hospital and rallied around to show their love and support. They love him so much.”

When Carlson’s siblings met him they instantly loved their baby brother, she said.

“When I told my daughter Chennae, who was 10, she named him ‘our little rainbow of uniqueness’ and their bond is so tight.

“My other son, Clayton, doesn’t understand what Down’s syndrome is and says Carlson is his best friend and the reason why he’s happy every day.”

Mrs Carlyle recognises the struggle of new parents in lockdown, particularly those who receive a shock diagnosis, and said of her time in hospital: “I simply would not have survived without my family [being able to visit me].

“They picked me up when I was broken and loved my little boy when I was unable.”

Drawing on her own challenges in the early days, Mrs Carlyle knows the value of positive advice rather than just being given restrictions.

“I just want a more realistic and balanced view into the life of living with a child with Down’s syndrome.”

“Seeing into the real lives of other families is what helped me see that it wasn’t doom and gloom at all, in fact far from it.

“Meeting other mums who knew how I felt and didn’t judge me for those feelings really helped, because unless you’ve been in this situation I don’t think you can understand how it hits you.”

Because of the restrictions during lockdown, Mrs Carlyle wants other families to know there is a lot of online support for new parents when they are ready to reach out.

“It took me quite a few months but I wish I hadn’t wasted those precious early days in a state of worry and depression because if I could rewind the clock I would do it so differently.

“There is an amazing community ready to welcome you and support your journey and they become like family.”

Celebrate your baby

She advises other parents: “Don’t be hard on yourself for any of the feelings you may have as it’s only natural to worry.

“For new mums dealing with a shock diagnosis, the first thing I would say is ‘congratulations… take your baby home, love them… take each day as it comes and stay in the present.

“Celebrate your beautiful baby, put those cards up and get ready for your life to be made extra special!

“Carlson has taught me that the extra chromosome doesn’t define him or anyone else, it is an added extra that makes him extra special.”

‘Wouldn’t change a thing’

Three-year-old Carlson is now in mainstream nursery, has lots of friends and loves learning.

He models with Zebedee talent agency – which represents children with disabilities – and has recently been announced as an ambassador for the ‘Wouldn’t Change a Thing Charity’ which tackles “negative, outdated perceptions of Down’s syndrome”.

The charity has made a book for new parents or those who are given a pre-natal diagnosis of Down’s syndrome.

Carlson and his siblings feature in that book and Mrs Carlyle said: “It would have been lovely to receive such a beautiful book instead of the literature I was given.”

She added: “We place no limits on Carlson… he keeps making us all proud by smashing life, proving that he is capable of anything… and breaking down stereotypes and negative perceptions people have about Down’s syndrome and disabilities in general.

“He was the missing piece to complete our puzzle. We really wouldn’t change a thing. He is my perfect son.”

Approximately 750 babies are born with Down’s syndrome each year in the UK.

The Down’s Syndrome Association offers support and advice for new parents on its website.

Covid: Vaccine ‘Life-Changing’ For Doctor With Genetic Disorder

February 9, 2021

A former consultant who has been shielding with her family for 11 months says getting the Covid vaccine will “set all my family free”.

Dr Victoria Lidstone said receiving the vaccine at the weekend meant she was “finally able to think about putting my arms around those that I love”.

The 50-year-old from Cardiff has Andersen-Tawil syndrome and said she had taken Covid extremely seriously.

She lost her mother to the same disorder when she was a young adult.

The rare genetic disorder can mean episodes of muscle weakness and paralysis.

‘One long lockdown’

The former palliative care consultant said losing her mother meant she felt she had “missed out on so much since by not having her around”.

She said: “I didn’t want that for my children.

“I want to be there for them so as a family we have taken Covid extremely seriously, we have shielded as a family and been really careful for nearly a year.

“To say this hasn’t been easy for my three kids in their late-teens to do this is putting it mildly.

“Lockdowns haven’t really made a difference to us – it’s been one long lockdown and the vaccine will set all my family free.”

‘On their knees’

Dr Lidstone stopped work in her early-40s because of her medical condition but still has many friends in the NHS and her husband is an NHS consultant.

“As a doctor myself I do have an idea of what my colleagues are going through right now, and it’s not good,” she said.

“I have lots of friends in the NHS who have been working on this treadmill since last spring – the phrase, ‘working like there’s no tomorrow’ comes to mind…

“I can’t help, except with the odd phone call…

“My mates keep on keeping on for me, for you, for everyone – they are exhausted, mentally and physically.”

She has now launched a fundraising campaign to raise money for NHS Charities Together.

“The NHS staff are on their knees,” she said.

“There is no getting away from that fact. They have been exhausted for months. It’s the least I can do to raise some funds to improve their kit and staffing levels.

“Whilst I look forward to my life massively improving, and the prospect of surviving Covid if I catch it, the NHS staff will continue to work day-in-day-out for all of us.”

Tara Bostock’s Family Call For Research Into LD Covid Death Rates

February 8, 2021

The family of a woman with Down’s syndrome who died after contracting Covid-19 are calling for more research into how the virus affects people with disabilities.

Tara Bostock, 51, from Barlestone in Leicestershire, died despite having self-isolated, her family said.

Research has found people with learning disabilities are more likely to die from Covid.

Ms Bostock’s family described the death rate as “astonishing”.

‘Appalling loss’

Ms Bostock – described by her family as “a joy to be around” – lived with her sister and was waiting for a vaccine before she died on 21 January.

Her relatives said she was “the most beautiful, loving person”.

Niece Rebecca Barnes said people with learning disabilities needed to be vaccinated faster.

“I completely understand the elderly are very vulnerable,” she said.

“They need to be looked after, but there are other people that need looking after as well.

“The figures are astonishing [concerning] how many people are dying with learning disabilities.”

According to Mencap, 80% of deaths of people with learning disabilities in England in the week up to 22 January were Covid-related.

Dan Scorer, from the charity, said a lack of access to health services and a lack of social care have been factors in the “appalling loss of life”.

“People have struggled to understand the complex and ever-changing rules they’ve needed to stay safe,” he said.

Ms Barnes’ family are holding a number of fundraising events in her memory to support two social clubs that she attended.

Teacher With Tourettes Describes Distressing Vaccination Experience

February 8, 2021

COVID’s Disabled Victims | People And Power

February 8, 2021

Sia Says Sorry To Autism Community For Controversial Film Music

February 5, 2021

Australian pop star Sia has apologised for casting a neurotypical actor as a nonverbal autistic girl in her film Music, and for scenes depicting the use of restraints on autistic people.

Her directorial debut Music attracted controversy online on Wednesday after it was nominated for two Golden Globes.

It was criticised for the casting of dancer Maddie Ziegler in an autistic role, as well as for restraint scenes.

Sia has now said a restraint warning would be added to the film’s start.https://emp.bbc.co.uk/emp/SMPj/2.39.15/iframe.htmlmedia captionWhy has Sia been criticised for her new film?

Variety said the singer had also tweeted that all restraint scenes will be removed from public screenings of the film.

“I plan to remove the restraint scenes from all future printings. I listened to the wrong people and that is my responsibility, my research was clearly not thorough enough, not wide enough,” she tweeted, shortly before deleting her account which had about 6m followers.

“I promise, have been listening. The motion picture Music will, moving forward, have this warning at the head of the movie,” she said.

She added: “Music in no way condones or recommends the use of restraint on autistic people. There are autistic occupational therapists that specialise in sensory processing who can be consulted to explain safe ways to provide proprioceptive, deep-pressure feedback to help w[ith] meltdown safety.”

On Wednesday, actress Ruth Madeley, who has spina bifida, expressed solidarity with “every #ActuallyAutistic person who is rightly devastated to see #Sia”s Music nominated”.

“Disabled people are needed in the industry now more than ever to help change the narrative we’re all so sick of,” tweeted the actress, who was in 2019 BBC drama Years and Years and has featured in BBC One’s Celebrity Best Home Cook.

A tweet from GhillieGuide, an “austistic self-advocate”, said the use of restraint in the film brought back “traumatic memories”.

The film, written and directed by Sia, also stars Kate Hudson and Leslie Odom Jr, and will be released in certain cinemas around the world for one night only next week.

It received a Golden Globe nomination for best picture in the musical or comedy category, along with Kate Hudson, who got a nod for best actress.

In November a petition to cancel the film, which Sia described as “a love letter to caregivers and to the autism community,” went up online.

Speaking recently on the Grounded with Louis Theroux podcast, Sia agreed with him that the challenges and experiences for people with autism are varied, and said she wanted that to be reflected on screen.

“Sometimes it’s coupled with savant capabilities and other times it is not,” she said. “If you went and met everybody in the world who is on the autism spectrum you would never find two the same.”

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Analysis

By Drew Miller Hyndman, disability reporter, BBC Ouch

Autistic people were speaking out against Music the day it was announced, with complaints focused on the stereotyping of autistic people and the decision to cast Maddie Ziegler, a non-autistic actress, as the autistic lead character.

The strong feelings behind these complaints were exacerbated when Sia engaged directly with autistic people on social media.

In one tweet, she even called one a “bad actor”, a moment that has come to sum up this film for autistic people.

For many in the autistic community, Sia’s apology is being seen as too little too late, and the damage has been done.

Covid: Blind Woman’s Shielding Case Granted Judicial Review

February 5, 2021

A blind woman taking legal action against the government over claims they did not give her accessible information on shielding has been granted a judicial review.

Sarah Leadbetter said the government sent her letters in a “tiny” font rather than in a format she can access like email or audio files.

The 45-year-old said the review showed how “important” the matter was.

The government said it remained focused on protecting the most vulnerable.

Ms Leadbetter – who is classed as clinically extremely vulnerable – has a genetic condition that affects her immune system, is in remission from cancer and lives with her elderly parents who also have health issues.

She said she only discovered she was on the Shielded Patients List because her mother, who is also shielding, received the same letter and told Ms Leadbetter.

Her solicitors said this breaches duties under the Equality Act 2010 and the Accessible Information Standard.

Ms Leadbetter, from Narborough, Leicestershire, previously said formats like an audio CD or emails with voiceover capability were preferable to Braille and large type.

She said it was “wonderful” a judicial review had been granted.

Ms Leadbetter added: “This shows how important it is that blind people, not just me, should get information in an alternative format.

“This change needs to happen.

“The issues I face are not unique to me, they are commonplace among blind and partially sighted people. We feel as if we are treated like second-class citizens.”

Solicitor Kate Egerton, who is acting for Ms Leadbetter, said the Department of Health and Social Care (DHSC) refused to provide sight impaired people with communications regarding shielding in their preferred format.

She said: “The DHSC argue that their failure to do so is not unlawful because there is no substantial disadvantage to sight impaired people in receiving hard copy letters, and that it would be too difficult logistically to provide sight impaired people on the shielding list with their preferred formats.

“Clearly, not being about to access information about shielding puts people’s own health – and that of their families – at significant risk.”

A department spokesperson said: “The government remains focused on protecting the most vulnerable in our society.

“We have issued guidance for the clinically extremely vulnerable with information on how they can keep themselves safe during the restrictions, and this, along with a wide range of public health guidance, has been made available in a variety of formats.

“Letters detailing shielding advice for the clinically extremely vulnerable are also available in a range of formats and languages, and are also sent by email where an individual has registered an email address with their GP practice.”

The judicial review is due to take place at the High Court in March.

Covid’s Harmful Effect On Disabled People’s Activity Exposed By Survey

February 4, 2021

Covid-19 has reversed progress made in levels of activity among disabled people, according to a new report, amid concerns the gains may not be recovered because of the scarifying effects of the pandemic.

The observations come in the second Annual Disability and Activity Survey, which measures participation and attitudes towards physical activity among disabled people. Conducted by the disability charity Activity Alliance, it is seen as a companion to Sport England’s Active Lives study.Leading Paralympian says lockdown needs of disabled people ignoredRead more

The survey found that before the onset of Covid the number of disabled people who said they were physically inactive had fallen to 34%, down from 41% the year before. This corresponded with an 18% rise (from 40% to 58%) in the share of those who said they had “the opportunity to be as physically active as they want to be”. Following Covid, however, that number has fallen back to 39%, with the need to self-isolate the most common reason given, alongside a fear of contracting the virus.Advertisement

According to the chief executive of the Activity Alliance, Barry Horne, this change reflects the disproportionate impact Covid has had on disabled people. “Two thirds of people who have died from Covid are classed as disabled people,” Horne said. “What this survey shows and the Active Lives survey shows is that they are disproportionately impacted in terms of activity levels, too.

“There are external factors such as the lockdown but there’s also logistical factors in terms of being able to connect with the people who might help someone to exercise. You’ve also got the crisis within sports activity providers where they’re able to do a lot less.

“Finally the big thing that comes out is where disabled people are coming from. They’re more fearful. The proportion of disabled people who fear catching Covid is significantly higher than the wider population.”

With the leisure industry in financial crisis, Horne insists whatever provision remains post-Covid must be focused first on those who need it most.https://www.theguardian.com/email/form/plaintone/the-recapSign up to The Recap, our weekly email of editors’ picks.

“When I talk about inclusive practice it’s not just about the provision it’s about how you engage people’s psychological concerns and make it feel relevant for them”, he said.

“The resource will be what it is, the access to it is what matters. There are mechanisms through which it can happen but the reality is that this agenda has not been prioritised. We were starting to, however, and that’s my bit of optimism.”

Young Shielders: Covid Vaccine Is A Ticket Back To Normal

February 4, 2021

I was out walking my dog last March when I received a text telling me I was clinically vulnerable and needed to start shielding immediately.

Being totally honest, I burst into tears when I saw it – knowing I wouldn’t be able to go out for a walk or a run, or even go to the supermarket.

I’ve had an auto-immune disease since the age of ten and take immunosuppressants, which have controlled it really well and let me lead a relatively normal life.

But one thing I’ve always struggled with is my weakened immune system. Before lockdown I’d get common colds that would knock me out for weeks and constantly need antibiotics for various infections I pick up.

I’d certainly let myself wonder about what would happen to me if I did catch coronavirus and working as a journalist every day certainly didn’t help that feeling of anxiety.

So when I got a text last week offering me the chance to book in my first vaccine, I was absolutely overjoyed.

I immediately texted my parents, my sister and my friends – it felt like the biggest thing that had happened to me in a long time.

As I walked to the vaccine centre on Saturday morning (in my new trainers and a full face of make-up, because why not?), I allowed myself to dream.

I thought about all the things I used to take for granted, but now miss so much.

Spontaneously planning a night out three hours in advance. The excitement you get before going to a gig. The countdown and frantic packing days before a holiday. Not that we can do any of that just yet – but still, it’s good to dream.

A paramedic gave me the jab and handed me a card with my batch number on, which now felt like the most precious thing I owned.

It was my ticket to a return to normal life.

I called some fellow twentysomethings who’ve also had to shield and have got the jab.

El Afzal is a 24-year-old from Manchester, whose severe asthma and skin condition have meant she’s also had to shield.

“Everyone’s struggled with lockdown but when you’re clinically vulnerable there’s a different stress level,” she says.

“I was getting all the texts and letters from the government telling me I was more likely to get severe Covid and that’s been really hard in terms of anxiety.”

‘I can sleep through the night’

El found it very tough seeing her friends going out – even in a limited, socially-distanced way.

“It feels like a big kick in the face when you’re sat at home and you can’t even go to the shop.”

She says her experience of trying to get the vaccine was tough at first because her health conditions meant she couldn’t receive the Pfizer jab.

“I’ve had the Oxford one now and I’m really grateful that I’ve been able to have it at this point and at least get my first jab.

“There’s a sense of relief and I can sleep through the night and actually know I’ve done everything that I possibly can to ensure I’m as safe as possible,” she says.

“I remember sitting down with my family eating lunch and my mum looked at her phone and she’d got the text – I had my phone charging in the other room and I went to grab it.

“It was incredible to see that message – I was absolutely buzzing.”

Georgie Hodges is a 20-year-old student from London who has been shielding since the start of the pandemic due to a genetic condition. She says lockdown’s had a really bad impact on her education and social life.

“My attention span has completely dropped in the last year and I can’t sit down and focus – I also have joint pain and mobility issues,” she says.

Georgie, along with her key worker parents, has received the first dose of the vaccine but doesn’t expect her life to suddenly change, even when restrictions are relaxed.

“I won’t be going out as normal until I get the second part but I’m actually quite overwhelmed with what to do,” she says.

“I find going out for a walk quite overwhelming at the moment, so as much as I’d love to say I’ll be going out with my friends, I don’t know what I’ll do.”

But Georgie says she “can’t put into words” how it feels to know that she’s on her way back to a normal life.

“It’s finally light at the end of the tunnel.”

Covid: Captain Sir Tom Moore ‘Inspired Me To Walk Through The Agony’

February 3, 2021

A paralysed 999 call handler has walked one lap of a football pitch in honour of Captain Sir Tom Moore.

Sean Ash, 39, from Bexley, south east London, was told he would never walk again after being diagnosed with a rare spinal condition in August.

However, after months of therapy, he was able to walk small steps with the help of a walking frame.

Mr Ash said he would “keep walking for him as long as I can” in memory of Capt Sir Tom.

He completed a lap of Millwall’s pitch on Tuesday to raise money for the NHS.

He said: “Every step that I take, all the pain and agony that I go through, it’s all for something bigger than myself.”

“I’m walking for everyone that has a spinal cord injury. I’m walking for all our NHS heroes.”

In January Mr Ash raised almost £60,000 for his London Ambulance Service and NHS colleagues after walking a mile around the roads surrounding his home.

He said he was inspired by 100-year-old Capt Sir Tom’s fundraising efforts.

“I want to inspire the nation to get up and walk for Tom.

“There was a time when he got up and walked for us when we needed him,” said Mr Ash.

Capt Sir Tom previously described Mr Ash as an “inspirational young man”.

Mr Ash is paralysed from the waist down due to cauda equina syndrome (CES) – a rare type of spinal stenosis where all of the nerves in the lower back suddenly become compressed.

Although he has completed the walk recovery will be painful he said.

“A lot of people see me walk around here and think that’s the challenge. But the challenge is now when I get home and I’ve got to recover somehow.

“But it was worth it.”