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Cost Of Living: Disability Charity Says Carers Are Skipping Meals

July 7, 2022

A national charity supporting children with disabilities says more than 90% of the families it helps are struggling to pay bills due to rising living costs.

Half of carers looking after disabled youngsters have skipped meals in the past 12 months to cut back on spending, a survey by Family Fund suggests.

A West Yorkshire family supported by the charity say they are “scared” they won’t be able to afford winter heating.

The government said it was helping families with disabled children.

York-based Family Fund said many families with seriously ill or disabled children faced higher energy bills due to the need to power home medical equipment.

Frequent GP or hospital appointments mean regular car journeys for many, including the family of 11-year-old Charlie, from Bingley in West Yorkshire.

“We can’t go on as many car trips because of how much the price of fuel has risen,” said Charlie, who has autism and learning disabilities.

“I wish none of this would have happened because I absolutely love going on car trips.”

His mother Katie Conway has a chronic lung condition and relies on home medical equipment, with Charlie using a sensory bubble tube to help him feel calm.

Mrs Conway, whose electricity bill has doubled in 2022, said: “We’re really affected by the cost of electricity because we use a lot with medical equipment, we’ve got less to spend on food.

“It’s really quite limiting, we’ve got lots of hospital appointments and, come winter, I’m scared we won’t be able to afford to have the heating on as and when we need.”

More than 1,060 families raising disabled children took part in the Family Fund survey, with participants reporting an average household bill increase of £1,500 during the past 12 months.

Two in five of the families surveyed reported they could not afford to keep their accommodation warm, with concerns the situation would only worsen.

Richard Hughes, from Family Fund, said: “They’re in a situation where it’s not even a choice between heating or eating, many families are telling us they’re going without both.

“We’re seeing an increasing number of families having to go without food or skip meals in order to provide for their children.”

In a statement, a government spokesperson said: “We know that living with a long-term illness or disability can impact on living costs, which is why financial support is available to those with disabilities or caring responsibilities and we urge people to check they are getting all the help to which they are entitled.

“We are helping low-income families with seriously ill or disabled children with £27.3m this year to help pay for equipment, goods or services.”

Wireless Festival Experience ‘Upsetting’ For Disabled Fans

July 6, 2022

Disabled ticketholders have described their experience at Wireless Festival as “disheartening and a waste of time and money”.

The three-day event at Crystal Palace over the weekend featured the likes of A$AP Rocky and J. Cole.

But wheelchair users were faced with steep hills, rough gravel and obscured views of the stage.

“I just am really tired of feeling like a second-class citizen,” Katouche Goll tells Radio 1 Newsbeat.

“We were stuck on the platform. It was windy, it was cold and it took them an hour to provide seating for us up there on the first day.”

The ticket cost the 25-year-old – who has cerebral palsy – more than £200 and she feels it was “a waste”.

‘Sad and upsetting’

Katouche was there with her friend Lexi who says “it felt like a struggle” trying to navigate the “potholes, gravel and steep hills”.

She describes “bad pathways and flooring” throughout, which were “mostly for go karts, not wheelchair users”, and not “a very good ramp” when she got to the viewing platform.

The music fans say the more they got on to the festival site, “the worse the access was”.

Lexi’s wheelchair has an attachment which makes it easier to go through rough and bad surfaces, but she was still unable “to go up the ramp because it didn’t have grip”.

And at a second viewing platform, her view was obscured by “a tree right in front of us”.

Lexi credits a security guard for making “a little area for us so we can see the stage”, but feels provisions should have been there “in the first instance”.

“It’s very sad and upsetting. We wanted to celebrate together with our friends, so for us to go there and be so far away from other people, it wasn’t an enjoyable experience at all for us.”

Katouche says staff members were not able to give directions towards the accessible entrance.

She feels most of the workers were “completely unbothered, incompetent, somewhat hostile to any sort of request we have”.

Lexi says previous Wireless Festivals were “well-organised” with access guides and information sent beforehand.

But the pair feel organisers need “consultations with people who are disabled”.

Both Lexi and Katouche will be at Finsbury Park for Wireless next weekend, and are hoping things will improve.

The festival’s organisers Live Nation and Festival Republic have not yet responded to Newsbeat’s request for comment, but they have offered a refund to Lexi.

In an email to her, they say they “fell below” normal standards and apologised for the experience.

“We do hope this experience does not put you off attending one of our festivals in the future where hopefully you are able to have a more positive experience and judge us in a better light.”

Susie Steiner: Author Of Manon Bradshaw Detective Novels Dies At 51

July 5, 2022

Novelist and former journalist Susie Steiner, best known for writing the Manon Bradshaw detective series, has died from a brain tumour aged 51.

Steiner wrote three DS Bradshaw books including 2016’s Missing, Presumed, which was shortlisted for the Theakston crime novel award and picked for the Richard and Judy Book Club.

It has sold 250,000 copies in the UK.

Marian Keyes led the tributes, writing: “Her books were absolutely wonderful, Manon Bradshaw was a great character.”

Steiner had previously been a journalist for 20 years, writing for The Guardian, Evening Standard, Daily Telegraph and The Times.

In May 2019, she was diagnosed with brain cancer, a grade 4 glioblastoma, and her website said she spent most of 2019 having treatment comprising six hours of brain surgery, chemo radiation, and six cycles of chemotherapy.

Her first novel, 2013’s Homecoming, was well received by critics. That was followed by Missing, Presumed, which was a Sunday Times bestseller and chosen as a standout book for The Guardian and Wall Street Journal.

The sequel, Persons Unknown, along with the third book in the DS Bradshaw series, 2020’s Remain Silent, were both longlisted for the Theakstons prize.

She told the Guardian in 2020 that she had written Remain Silent with a “nine-centimetre tumour pushing my brain over its midline. But I didn’t know about it”.

She was also registered blind after losing her eyesight to retinitis pigmentosa.

She wrote in the Independent in 2016: “My sight loss, which has begun to limit me only in the last five years, has accompanied an increase in my creative output as a novelist. The two seem intertwined, as if the less I can see of the world, the more I can focus inwardly.”

Following her death, her agent Sarah Ballard told the Guardian that Steiner’s “glorious talent as a writer was rooted in her deep appreciation of the undercurrents of human nature”, adding: “Her special insight made her not just a critically acclaimed and bestselling writer, but also a generous and sharply funny friend who will be missed by everyone who knew her.”

Her publisher, Suzie Dooré, told the newspaper: “Susie was an extraordinary person and a wonderful writer. Personally, I am proud to have also counted her as a friend, and will always remember and cherish her quick wit and brutal honesty, both attributes she was able to pass on to her series character Manon Bradshaw.

“A train trip to a festival with Susie was guaranteed to bring hilarity, oversharing, Percy Pigs and mini bottles of wine. She was truly unique, full of warmth and incredibly perceptive.”

Steiner leaves her husband and two children.

TikToker’s Wheelchair-Airport Ruse Sparks Anger

July 5, 2022

A TikTok video creator who feigned injury to use a wheelchair to help him skip airport queues has sparked anger.

The post was shared by user @wolfjenko from Leeds and has had more than 1.6m views. It shows him being wheeled to the front of a queue by Jet2 staff.

He flew from Milas-Bodrum Airport in Turkey to Bristol Airport in June, where he filmed himself admitting the ruse, then walking away once outside.

A Disability Rights UK spokesperson has condemned his actions.

Fazilet Hadi, the charity’s head of policy, said: “If non-disabled people think that being a disabled person gets you a better service, they are sadly mistaken.”

The now viral video, first posted on 21 June, shows the user taking off a sock.

In the video he can then be seen saying: “Faked hurting my leg to get through security faster.”

His friends and airport staff push him through the airport and his friends are seen laughing as he jumps a queue.

“New low”

The group enters a wheelchair only area and @wolfjenko is given extra seats on the plane to rest his leg.

Once he has wheeled himself out of Bristol Airport he puts his shoes and socks back on and walks off.

While some on social media agreed with his actions, the video attracted other comments such as: “This really isn’t funny, there are some of us that really need this!!!”

Another user said: “Wow, new low…”

Ms Hadi said there had recently been “a number of high profile cases” where disabled people were forced to wait hours for passenger assistance without any communication.

“Things are so bad that the Civil Aviation Authority has written to airports asking them to dramatically improve their support to disabled passengers,” she added.

A Jet2 spokesperson said they did not condone his behaviour.

“It is extremely disappointing to see customers who do not require special assistance using this service and taking valuable resources away from those who genuinely need it,” the spokesperson added.

TAV Airports, the company in charge of Milas-Bodrum airport, said it could not comment as the service was provided by the airlines themselves and not by the airport operators.

Bristol Airport also declined to comment as it said the “alleged behaviour” only took place at Milas-Bodrum airport.

Disabled And LGBT

July 4, 2022

Heading to university is often seen as a time to become your own person. According to new figures from UCAS, more students than ever are identifying as disabled and LGBT, so what are the challenges and intricacies of belonging to both communities?

Lucy King couldn’t wait to start her Speech and Language Therapy degree at Essex University last September.

The first-year student has spina bifida and is paralysed below the knees and uses a wheelchair full-time. She also jokes about being a “female disabled lesbian who’s also a feminist and Christian” and was worried about finding her community.

Lucy isn’t alone. UCAS – the Universities and Colleges Admissions Service – revealed to the BBC Access All podcast that last year’s disabled cohort were twice as likely to identify as LGBT compared to non-disabled applicants.

It found 15% of disabled applicants share an LGBT identity, compared to 8% of non-disabled.

The complexities of this go a lot further than just a paper exercise, it raises considerations about accessible venues, reasonable adjustments and inclusion.

Lucy says moving to university was “very difficult”. As well as all the usual administration and loan application she also had to arrange a care package for help with tasks including showering.

But she says the hardest part was finding her disabled community.

“You need people to complain to, like when the lift is broken down. I found it very helpful to be able to have people who relate to me.”

With no Disabled Society, Lucy joined the LGBT society where she also found many disabled people – and says the UCAS figures ring true. But, she says, it would be so much better if ticking the “disabled” box on her UCAS form led to social connections as well as reasonable adjustments.

This is something UCAS is hoping to address following its latest research, which revealed a record 83,220 disabled people applied last year – up from 77,000 in 2021

CEO Clare Marchant says UCAS is “investing” in information to enable potential students to be able to talk to current students which she says will help people, like Lucy, find their communities more quickly.

When Lucy did settle in she says societies and groups were all very accepting, but she faced discrimination in other ways.

‘Kick in the teeth’

At an LGBT Christmas party she “did everything I could” to inform the host and nightclub that she used a wheelchair.

“But I turned up and you had to go up these very steep stairs. In the end, my dad carried me up the stairs,” Lucy says.

The event was held in a private room and “for no reason” there was a single step into it, meaning Lucy couldn’t get to the bar although “I didn’t let it stop me” having a good time.

With London Pride taking place on Saturday and July being Disability Pride Month, Dr Ju Gosling, a disabled lesbian who is co-chair of Regard the LGBTQI+disabled peoples’ organisation, says such incidents are a “real kick in the teeth”.

She’s knows of another event for LGBT people of colour where organisers thought they had “ticked the intersectionality box”. But it was at an upstairs venue with no accessible toilet and “completely inaccessible to disabled LGBT people of colour”.

She says incidents like this highlight how important it is to consider “people” rather than the minorities they might represent.

“It’s not about having more than one identity, it’s about having one unified identity and if people don’t see all of those things about me, they don’t know who I am.”

Dr Gosling says UCAS’s figures reflect what she has seen in her own research although she believes the stats could be higher as many disabled people choose not to declare their sexuality in case it impacts on their care or support network.

She says one of the reasons the number is higher than the general population is because discrimination can lead to disability or mental health problems due to the isolation and violence. She experienced a brain injury 20 years ago in a discriminatory attack.

She also thinks long covid will change the picture again, which means adequate support and information is needed to ensure people don’t face double discrimination – disability and sexual.

Connor Scott-Gardner, a blind trans man studying at the University of Leeds, says he has experienced double discrimination at university.

While his faculty has been “amazing”, when he wanted to change his name he hit an administrative stumbling block.

The university would only issue an inaccessible PDF form which he was unable to fill in because “I can’t write or read”. It took several stressful months before this was resolved.

He says “toilets are another big one”. If someone is unsure if Connor meant to enter the men’s bathroom, instead of thinking it was his choice, they think “oh no, a blind person has gone in the wrong bathroom,” and guide him out.

“You have to laugh,” he says, but it’s a serious and personal matter.

Connor says recognising that people can belong to more than one group “goes a long way” and “means we plan better for everyone”.

Lucy, who has been appointed Disabled Student Officer, agrees. “Disability just needs to part of that conversation,” she says. “Ensuring that events are held at accessible places.”

Clare at UCAS says it is hoping to improve its own planning by connecting with disabled students long before they apply to ensure their needs are met and offer reassurances.

She says some students start to think about university from the age of 10 and 56% of last year’s disabled applicants specifically researched support before applying showing how “super important” it is.

UCAS has called on the government to extend its Adjustment Passports to schools.

Currently being trialled at the University of Wolverhampton and Manchester Metropolitan University the passports are a way to collate student information which can then be passed onto future employees without further assessments.

“We know if a transition is a good transition than they’re more likely to continue in their studies and be successful,” Clare says, while the government adds it is “considering its next steps”.

Although some people may not want to disclose their disability to UCAS, Clare says it opens up lots of support options.

“It’s not just about access arrangements once you get to university. Think about open days and interviews and auditions – universities can help with that.”

Dr Ju agrees planning is important, but says it’s also about thinking more deeply about the people around you, especially if they require some level of care.

“I’ve come across situations where everybody thinks so-and-so is unsociable, but they’re not. They just have to be back in their room at 20:00 because they’re put into bed by 21:00 and they might not want to disclose that.”

She says for visually impaired students it might be a case of knocking on their door to “offer an elbow” to guide them to a function.

“Don’t just assume, ask people what they need to take part.”

You can listen to the podcast and find information and support on the Access All page

‘Not Again!’: BBC Journalist Frank Gardner Left Stuck On Plane At Gatwick

July 4, 2022

The BBC journalist Frank Gardner has expressed outrage at being left on a plane after it landed at Gatwick.

The security correspondent, who uses a wheelchair, was stranded on the aircraft after flying to the West Sussex airport with Iberia Express on Thursday night.

A passenger with restricted mobility died at Gatwick on 15 June. He fell while going up an escalator after leaving an aircraft without a helper.

Gardner has been left on planes at UK airports several times in recent years.

During the latest incident, he posted an image on Twitter from inside the aircraft with no other passengers in sight.

He wrote: “FFS not again! Just back from exhausting week covering Nato summit in Madrid and quelle surprise, I’m still stuck on the plane at Gatwick.

“Iberia crew are gone and a new crew has come onboard.

“Just WHY are UK airports so consistently crap at getting disabled people off planes?”

He added: “It never happens abroad, only in UK.”

Once he was able to leave the aircraft, Gardner wrote: “Off the plane now – only a 20-minute delay which is mild – but ground handlers said ‘nobody told us there was a disabled passenger onboard’.

“Airline, Iberia, insist they did.

“All in all, so tedious and boring!”

A Gatwick spokesperson said: “We apologise for the delay Mr Gardner experienced on this occasion.

“We have been working closely with our assistance provider, Wilson James, to establish the reasons for this.

“At this stage, it appears there was no special assistance booking from the airline for Mr Gardner.

“However, as soon as we were made aware, the team responded and Mr Gardner received assistance within 20 minutes.

“We strive to provide the best possible service to all passengers so will continue to look into this with Wilson James and the airline concerned.

“We apologise again for any delay Mr Gardner experienced returning from the Nato summit in Madrid.”

Gardner was left partially paralysed after al-Qaida gunmen shot him in Saudi Arabia in 2004.

Invisible Disabilities: How An Autism Diagnosis Changed My Life

July 1, 2022

What’s it like living with an invisible disability in London? In the UK one in 100 people are on the autism spectrum and there are around 700,000 autistic adults and children. (Source: National Autistic Society)

Barrington Campbell received an autism diagnosis at 30 years old. He said he had struggles making friends while growing up and felt isolated.

Five years later he’s created Kagai Games, designed to provide tabletop games and events for people with social anxiety.

He said: “I wanted to provide a space that was inclusive for everyone with social anxiety.”

Living With IBD

June 30, 2022

What’s it like living with an invisible disability in London? About 540,000 people have inflammatory bowel disease (IBD) in the UK and more than 69,000 of them are in the capital.

Some sufferers say the lack of toilets is the worst thing about living in the city.

Bethany Jacobs has Crohn’s disease and lives with a permanent stoma bag.

She said: “I think you do need to break down those barriers and open up these conversations where we talk about invisible illnesses such as Crohn’s disease.”

No Masks, No Free Tests, Low Sick Pay – The UK Government Is Back In Covid Denial

June 29, 2022

If you’re reading this in the UK, odds are that by now you’ve had coronavirus: 7 in 10 of us have watched the dreaded red line appear. You may have been stuck in bed with it twice or even three times by now; by April 2022, England alone had recorded almost 900,000 reinfections. When the public asked to “return to normal”, I’m not sure a regular hacking cough was what they had in mind.

It is an odd situation. Last week, Covid infections were reported to have soared by 43%, while hospitalisation from the virus rose by 23%. An estimated 1.7 million people in the UK tested positive over those seven days. Two million of us now have long Covid, with about two in five of those – or 826,000 people – having symptoms for at least a year.

And yet, listen to Boris Johnson or his ministers and you’d be forgiven for thinking none of this was really happening. As a new coronavirus wave threatens to hit the country once again, the government appears more interested in scrapping human rights than protecting human lives. Welcome to sick man Britain: where the public are left to catch coronavirus repeatedly, and ministers pretend everything is fine.

Back in February, Johnson said the government had created a plan to start “living with Covid”, but what it really did was form a plan to catch and spread Covid. After all coronavirus prevention measures were dropped on 1 April – from the legal obligation to isolate if you had Covid, to the end of most free testing – the public were left wide open to mass infection. Even hospitals were told by ministers to ditch mask mandates, though some worried trusts have defied the rules and kept them. That all precautions were pulled back just when most people’s vaccine immunity was beginning to fade, and the virus was evolving to be more transmissible, gives a hint at how little logic ministers applied.

One of the biggest problems facing Britain’s attempts to quell the virus is that this government doesn’t really want to.There is hope – the number of people dying from Covid has reduced since its peak – but excessive focus on this has long hidden the fact that loss of life has never been the only thing that matters: how many people are infected with the virus matters too. A strategy that lets the virus rip through the population increases the risk we all face, be it from surges, new dangerous variants, or in developing long Covid. Fundamentally, it means accepting a reality where it is deemed normal for many of us to be (possibly severely) sick, from a virus whose long-term effects – and the effects of repeated reinfection – we still know little about.

The likely longterm impact on the economy and society is similarly grim. It means more pressure on an NHS that’s already creaking under the weight of backlogs. It means sickness absences across key sectors and frontline workers, from nurses to teachers. Children missing more school. Not to mention soaring social security bills from long Covid patients who are too sick to work (the government’s solution to this appears to be turning them down for disability benefits).

There will be few greater casualties though than the 3.7 million clinically extremely vulnerable people, especially the 500,000 who are immunocompromised and can’t get much or any benefit from a booster jab. Trying to avoid the virus in a country that has forgone all safety measures means risking your life when you pop to the shops. Ministers who are content for repeated coronavirus infection to just become part of British life are content for isolation to be part of clinically vulnerable people’s.

There is an alternative. Campaigners are calling on the government to reinstate free lateral flow tests, the isolation requirement for those with a positive test, and financial help such as sick pay – few rational voices could disagree. Fixing our dire sick pay rates is only becoming more pressing in a cost of living crisis that means low-paid and insecure workers are likely to feel obliged to go into work when they have Covid. We must also start a long-term investment in ventilation and air filtration that can help make schools and workplaces safer, as well as makinglifesaving antiviral treatment more accessible to clinically vulnerable patients.

It’s also time for a renewed public health campaign for boosters; as of this month, around a fifth of people aged 75 and over in England are yet to have a fourth Covid jab. And fiddly though it is, wearing masks in busy and enclosed spaces again is the right thing to do; just under half of Britons (48%) reported wearing a face covering when outside their home last month, down from about 95% during the January Omicron wave.

After two long, tough years,no one wants to still be dealing with coronavirus. I don’t want to be writing this column.But unless we wish to sign up to getting repeatedly sick for the foreseeable future, and to the risk of long-term disability from long Covid, we are going to have to bring back low-effort protective measures to curb it. A recent public health campaign in Ireland, which encourages people to think of clinically vulnerable people in their daily interactions, shows how easy it is to do things differently.

The government may want to stop thinking about coronavirus, but in doing so, it is ensuring that all of us have to think about it for a long time to come. That’s something we will surely all get sick of fast.

Forced to Beg: Tanzania’s Trafficked Kids

June 28, 2022

A BBC undercover investigation has exposed a human trafficking network smuggling disabled children from Tanzania to Kenya.

Many are taken from their parents with the promise of a better life. Instead, the children are forced to beg on the streets – often for years – while their captors take all of the profits.

BBC Africa Eye helped one victim escape.

Njeri Mwangi reports from Nairobi.

Scope’s Lets Play Fair Campaign

June 27, 2022

How Does Blind Comedian Chris McCausland Play The HIGNFY Picture Round?

June 27, 2022

When blind comedian Chris McCausland appears on Have I Got News For You complaints often follow.

The Liverpudlian says viewers get very frustrated on his behalf and regularly turn to Twitter to vent their frustration.

“It’s appalling that the BBC are still using photographs and visual jokes’,” he says they tweet.

“But that’s what the show is, and I want to do that show,” he tells the BBC Access All podcast.

It’s a refreshing take on inclusivity and accessibility that people often tie themselves in knots over. Many of the panel shows he appears on, including Would I Lie To You, rely on visual cues such as pictures, items or missing word rounds.

He says it’s not a slight that they continue to play such games in his presence, it’s just part of the format which he doesn’t want changed just because he is visually impaired

“I do the News Quiz on Radio Four, but I don’t want Have I Got News For You to be morphed into the News Quiz just because I’m on it. They’re both great shows.”

The production effort behind these decisions relies on “far fewer” meetings than you might think and adjustments are made swiftly and without much fuss.

“They meet me halfway,” he says of the production teams. “They change one of the rounds to an audio round or something similar.”

He also lets his team mates know: “If there’s something you want to tell me, describe it. And if they want to leave it in the edit, they will. And if they don’t, they won’t.”

It’s something that cropped-up when he filmed the 2022 QI Christmas special, in February.

During the recording there was a visual magic trick without description.

Afterwards, QI team captain Alan Davies apologised that McCausland hadn’t been accommodated.

“It’s cool mate,” McCausland told him. “The world is visual, it’s television and not everything has to be for me.”

McCausland is more “comfortable” with himself and his impairment these days, but he found it difficult when he lost his sight in his 20s, due to a genetic condition called retinitis pigmentosa. Even now, “I still have a hatred of a white stick,” he says referring to learning how to use a cane.

“You think that everybody’s looking at you blundering your way along and you become very self-conscious. You want to be normal, you want to be a cool 20-odd year-old and you don’t feel like that.”

When he started his comedy back in 2003, a hobby away from his “soul destroying” call centre job, he would gloss over being blind.

“I’d do a joke at the beginning and I literally wouldn’t mention it again. I wanted them to forget that I was blind.”

He says at the time he was trying to “challenge preconceptions” about blind people and the low expectations people might foist on them. “That was my clumsy way of doing it by not talking about it,” he says.

But as he approaches 20 years on the comedy circuit he’s beginning to appreciate the unique insight he can offer.

He’s currently on a summer break from his mammoth 100-date tour, Speaky Blinder, in which he talks about his blindness more than ever. And while challenging preconceptions remains his “driving force”, his approach has changed.

“I’m a big believer in achieving in the mainstream and so to be doing this tour in big venues and people paying their money to come along and watch, it’s really lovely to see.”

He really did “achieve in the mainstream” a few weeks ago when he and fellow comedian Lee Mack created a comedy sketch around the pitfalls of a visual world for the Bafta TV Awards. It went viral, clocking up 6m views on the BBC Facebook account alone.

The duo, who are good friends, had spent the previous Wednesday at Mack’s house drinking “too many cups of coffee” thinking up a sketch. They started playing around with who would say what and when being McCausland can’t see an autocue and the farce of the situation made them both laugh.

“We thought: ‘This is the one’. We wanted to do something a bit riskier.”

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It seemed “hilarious” on the Wednesday but by the Sunday, when they were backstage at the awards, they were beginning to wonder if they’d made a terrible mistake and were about to offend the entire nation.

“We’d never tried it in front of people and we were doing it on live TV in front of everybody that could ever give us a job in the TV industry. It was a bit of a gamble.”

It opens with McCausland telling the celebrity-filled audience that it’s the first time a blind person has presented at the Baftas, “so Lee is going to tell me my bits from the autocue,” and so follows a skit of crossed-wires, repeating each other’s line and culminates with McCausland saying: “So let’s take a look, apparently, or a listen, I suppose..” at the nominations.

Their gamble paid off and it turned out to be the stand-out moment of the night.

The joke was also popular with the blind community who laughed because it was so close to the truth.

“If you strip the jokes out of it, then it is just the normal things that people would say,” Chris says, alluding to the sometimes clumsy way sighted-people might try to be helpful.

But life as a comedian, which has included hosting the BBC’s prestigious Live At The Apollo show three times and appearing at the Royal Variety Performance, could have turned out very differently.

McCausland graduated with a degree in software engineering in 2000, but found it difficult to get a job in an industry which was yet to get to grips with accessibility.

He started applying for “mad stuff”, including MI5 and made it to the final 30 applicants – “I was in the top 1% of potential spies. It’s astonishing.”

He says “discrimination” ultimately held him back from being a spook, but there was one occasion of discrimination which he was, ironically, pleased about and “wholeheartedly” believes in.

During an assessment day he was asked to sift information to identify potential threats within a limited time. In most other professions it’s a task he would request a reasonable adjustment for – such as having more time to complete it.

“But you can’t have Waterloo blowing up and then them going, ‘well, this guy needed extra time’ can you? There are certain things where you go, ‘thank God someone’s had the guts to stand up and go, ‘this bloke can’t do this…’.

There were also concerns that he might not blend in if he was on a mission to meet an informant to trade information with them.

“What’s more undercover than a blind bloke meeting his mate in the pub for a pint?’,” McCausland asked.

“Good point,” the assessor replied and wrote something down.

“I’ve always loved to think, to this day, that he just wrote down ’employ more blind people’.”

Glastonbury 2022: Billie Eilish To Make History As Youngest-Ever Headliner

June 24, 2022

Billie Eilish will become Glastonbury’s youngest ever solo headliner when she plays the Pyramid Stage on Friday.

The 20-year-old tops the bill just three years after her Glastonbury debut at a jam-packed Other Stage in 2019.

That year, her set had been upgraded from the much smaller John Peel tent after the phenomenal success of her breakout hit, Bad Guy.

Speaking from the stage, she lamented that she would never be able to experience the festival as a fan.

“This looks fun to go to,” she said. “I would love to go to this… My God.”

But the star’s early evening set was plagued by technical issues that overshadowed the experience for her, if not the crowd.

“Thank you for not leaving. I know you could have,” she said towards the end of her performance.

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Friday’s show should be less problematic, as Eilish has been fine-tuning her live show over months of intensive touring in the US and Europe.

The star is currently in the middle of a sold out, six-show run at London’s O2 Arena, where she’s been playing her second album, Happier Than Ever, almost in its entirety.

The Grammy-nominated record comments on the difficulties of her sudden and extreme fame, including its effects on her mental health and relationships.

On the opening track, Getting Older, she adopts a weary sigh as she sings: “Things I once enjoyed, just keep me employed now.”

Eilish says the songs reflect on a period of depression that led to suicidal thoughts during the early stages of her career.

“I don’t want to be too dark but I genuinely didn’t think I’d make it to 17,” she told CBS news in 2020.

The singer eventually sought help from her mother, Maggie Baird, who helped her access therapy. Making her second album during the pandemic also helped her combat the feelings of “joylessness” she’d experienced in her teens.

“All I can say now is, for anybody who isn’t doing well, it will get better,” she said. “Have hope. I did this with fame riding on my shoulders.

“Now I love what I do and I’m me again. The good me.

“And I love fame… I love the eyes on me.”

That’s been apparent at her recent UK shows, where she has been greeted with the sort of mania once reserved for the Beatles and Michael Jackson.

In London two weeks ago, she called one of her concerts to a halt after several fans passed out, overwhelmed at being in their idol’s presence.

When she plays Glastonbury, the audience will be a mixture of those diehard fans and casual onlookers – but Eilish is guaranteed to leave an impression.

Despite a teenage dance injury, which affected the growth plate in her femur, she bounds across the stage with wild abandon – her legs taped up to avoid further damage.

“I love movement,” she told the BBC in 2017. “I love moshing.

“I always head right for the front and dig in there and mosh really hard with all the guys. None of the girls want to mosh so I’m, like, the only girl getting punched in the face.”

Eilish tops the bill on the first full day of music at Glastonbury, after performances from the likes of Sam Fender, Crowded House and Robert Plant & Alison Kraus.

Disabled Passengers Bearing Brunt Of Travel Disruption, Say Charities

June 24, 2022

Disabled people are experiencing stress and degradation because of “truly appalling” service failures caused by the ongoing travel disruption, charities have said.

The train strikes and airline cancellations have been difficult for everyone, but campaigners say that because the transport industry treats disabled people as the lowest priority, they are bearing the brunt of the turmoil.

“Far too many disabled people have endured stressful and degrading travel experiences recently because they are constantly seen as an afterthought when it comes to transport, and when things go badly [in the travel industry] the impact is huge,” said James Taylor, the executive director of strategy at the disability equality charity Scope.

“On planes we’ve seen too many examples of disabled people forced to wait a long time for assistance, causing discomfort, frustration and huge delays to their trips,” he said. “On trains, disabled people can miss their stop entirely because staff have failed to provide assistance getting off the train. Disabled people are literally being left behind – we are still far from being an accessible society.”

Many disabled people had had enough of travelling because it was “so much harder than it needs to be”, he said. “As summer travel ramps up, transport providers must stop putting disabled passengers last.”

A Scope survey in 2018 found that 53% of disabled passengers who required assistance were often held on a plane longer than usually needed because their assistance had not arrived.

Fazilet Hadi, the head of policy at Disability Rights UK, said airports needed to significantly improve their assistance services to disabled passengers. She said: “In recent weeks, disabled people have experienced some truly appalling service failures and been left on planes for hours without any communication or help.

“The news that a disabled person died after waiting for a prolonged amount of time for help is truly shocking. Disabled people need much higher levels of support than those currently being provided, especially in the light of recent delays, cancellations and disruption.”

Airports have cancelled dozens of flights in the last fortnight because of staff shortages caused by the sacking of thousands of employees in 2020 during Covid restrictions. There have been multiple reports of flights being cancelled at the last minute, lost luggage, long queues and holidaymakers sleeping on the floor of terminals.

Disabled people have been stranded on planes, abandoned in empty airports and reported vital equipment such as wheelchairs damaged or lost.

An investigation has been opened into the death of a disabled passenger who reportedly fell down an escalator after getting off a flight without a helper at Gatwick airport. Days earlier, the Civil Aviation Authority said it had seen an increase in reports of “significant service failings” at airports, including incidents where passengers needing assistance had been taken off a plane hours after other passengers.

The tragedy happened a week after the same airport apologised to Victoria Brignell, who is paralysed from the neck down, after she was left on a plane for more than an hour and a half when assistance staff did not arrive.

“I booked the help three months in advance, so it wasn’t as if I just turned up. They knew I was coming, and I reminded them two weeks ago, and still I didn’t get the service that I should expect to have,” Brignell said.

Chris Nicholson, a former rugby player, said he had to drag himself up stairs at Milton Keynes train station last week after staff refused to help him owing to health and safety policy.

‘More Help Needed’ To Make Patient Info Accessible, Healthwatch Says

June 23, 2022

People with disabilities must be helped more by health providers to access information, a report has found.

Over 300 people in North Yorkshire were asked about communication from GPs, hospitals, and healthcare providers in a survey by watchdog Healthwatch.

The report said there is “some good practice” but many patients are not being contacted in their preferred format.

This leads to missed appointments which “costs time and money”.

Since 2016, the Accessible Information Standard means health and care organisations must legally provide a “consistent approach to identifying, recording, flagging, sharing, and meeting the information and communication support needs of patients, service users, carers and parents with a disability, impairment, or sensory loss,” Healthwatch said.

But the report said some people receive printed letters which they are unable to read meaning they have to ask for private and confidential information to be relayed.

Scarborough respondent Ian said it was “amazing” that in the 21st Century many are still facing such issues.

“The [GP booking] system doesn’t anticipate that not everyone can use the phone,” he said.

“The problem is a lot of organisations haven’t moved with the times”.

Siân Balsom, of Healthwatch York, said the legally-binding accessibility requirement has been in place for six years but evidence shows many people still struggle to access information in a suitable format.

“We hope this report will be a first step in improving this situation and making sure that those with lived experiences are listened to and supported,” she said.

“This is just the beginning of a long-term project in which we hope to work with health and care providers to make accessible information normal practice.”

Healthwatch North Yorkshire urged health and care providers to adopt the report’s recommendations.

“It is essential that organisations ask people what format they need and then act on this information,” Healthwatch said.

“Unfortunately, on many occasions, the responsibility is still on the person to ask for information in their preferred format. However, even when it is raised many times, respondents said their needs are often still not taken into account,” it added.

The BBC has contacted the NHS for comment.

Ultimate Thunder- The Band With Learning Disabilities

June 22, 2022

The best live bands are the most unpredictable, with every performance teetering between triumph and disaster. But even the most chaotic acts usually have some sort of set list.

Not Ultimate Thunder. This seven-piece post-punk outfit from Leeds amble on stage without even the vaguest running order, nor any confidence that their vocalist, Matthew Watson, will actually sing a note.

“We did one gig where he didn’t say a word the whole time and just stood staring at Scott, our drummer. The first the audience heard from him was right at the end when he said: ‘Isn’t the drummer amazing?!’” remembered guitarist James Heselwood this week, before the launch of Bring The Science, Ultimate Thunder’s debut single.

That particular manoeuvre is described by the band’s producer, Napoleon IIIrd, as “The most Mark E Smith thing ever”, a reference to the famously unpredictable frontman of Manchester’s The Fall. Until his death in 2018, Smith stalked the stage like a belligerent tiger, twiddling with the amps and berating his bandmates, the audience never sure if he was going to start a fight or deliver the best gig of their lives.

It is a fitting comparison: though sunnier natured than Smith, Watson specialises in sometimes aggressive, always surreal stream-of-consciousness lyrics that make surprising juxtapositions: one track on their eponymous debut album is called Holiday Camp Holiday Inn.

Everyone in Ultimate Thunder except Heselwood has learning disabilities. He founded the band 11 years ago as an art project with the help of Leeds charity People In Action. Like The Fall, who went through 66 members in their 40-year existence, Ultimate Thunder has had a revolving lineup, with Watson now at the helm after the band’s original singer, Dan Milligan, died.

Now supported by Pyramid, another Leeds-based arts charity, the band received a £43,000 grant from the Arts Council to make their debut LP and have it professionally mixed, pressed and promoted. The album artwork is by bassist John Greaves, another founding member, who gives off an air of supreme indifference. “Sometimes I wonder what’s going on with the basslines and I look over and see John playing a note with one hand and looking up anime comics on his phone with the other,” said Heselwood.

With several members of the band almost or exclusively non-verbal, and the others communicating in often non-linear fashion, they are less interested in being interviewed than jamming in their rehearsal space. Improvisation is their speciality. Someone tinkles a few notes on the piano or makes up a guitar riff, Anderson’s ferocious drums kick in, Watson begins to recite whatever is on his mind and they are off.

There is just one rule in Ultimate Thunder: no covers. They have done just one in 11 years, a festive rant called Jingle Bloody Bells which bore no relation to the festive original.

None of the band is particularly into The Fall: their music just comes out like that, with an added sweep of Hawkwind-esque bombast. Despite delivering most of Ultimate Thunder’s lyrics as beat poetry meets rap, Watson, a big Tom Jones fan with perfect pitch, can effortlessly switch between genres when crooning around the piano. John Densley, on bongos, only really likes one song (Silent Night … any time of the year). Alex Sykes on keys has eclectic taste ranging from Kiss to Scooter, the German happy hardcore band.

“Who is the most rock’n’roll member?” mused Heselwood. “Tough question.” He looked over at Scott Anderson, the drummer, who is paying no attention to the conversation. “Sometimes I look over and see Scott spitting in the air and catching it again in his mouth. That’s pretty rock’n’roll.”

Wannabe rock stars study for years to project the nonchalance of their heroes. It comes naturally to Ultimate Thunder, who seem less interested in talking about their first album than getting back into their Leeds rehearsal studio to jam. Talking is not their speciality: guitarist Kenneth Stainburn, the baby of the band, hands over a piece of paper on which someone has handwritten his band bio.

“My name is Kenneth Stainburn. I am 22 years old and I live in Castleford and I have learning disabilities. I like music, singing and making my own songs. I like most music and I play drums and guitar. In my spare time I play learning disability rugby league and I play for Castleford Tigers LD team.”

Playing live requires a lot of coordination of support workers and helpers, but they have gigged in Leeds and Bradford, sometimes alongside non-disabled bands such as That Fucking Tank. On 21 July they launch their album at Sheaf Street/Duke Studios in Leeds. Just don’t expect them to actually play any of the album tracks. Or for their singer to sing. Anything could happen.

Accessibility For Disabled Chefs

June 22, 2022

Louis Makepeace, who is very passionate about cooking, thinks there are lots of simple things restaurants and kitchens can do to make the profession more accessible.

“You’ve got to understand the person you’re taking on, and understand what the person needs and how they feel comfortable,” Louis, who has a form of dwarfism, says. “Then adapt around it. There’s a million things you can do to adapt to any circumstance.”

This year’s Accessibility in Hospitality survey from a UK hospitality research company, which questioned 250 people, suggests 71% believe more should be done to bring attention to the lack of accessibility for disabled people in the hospitality industry.

Mark Reynolds, vice chair of the Craft Guild of Chefs – the main professional association for chefs in the UK – says: “My brigade [kitchen staff], like all of them, is a family and we are very protective of the team at every level, from first job to head chef.

“The unique thing about our industry is that we have the flexibility to embrace every walk of life, and with the right training and support, the kitchen can be a great place for everyone to thrive and build a rewarding career.”

‘Everyone adapted really well’

“It was a brilliant experience,” says Louis, about competing on the BBC Three cooking show Hungry For It. The show, hosted by Stacey Dooley alongside mentors and judges Big Zuu and Kayla Greer, gives aspiring cooks a chance to skill up and put their talent to the test.

Louis, from Worcester, has achondroplasia a genetic condition that is the most common type of dwarfism – or restricted growth – in the UK.

Louis says he’s faced discrimination because of the condition. When he was younger, Louis was allegedly told he was a “safety risk” when he was applying to attend a catering course.

“Every day I wake up, I’m going to face some form of discrimination. Every time I walk out my door, I’ll get either abuse or some form of negativity thrown my way.

“I’ve had people try and beat me up. I’ve had attacks. I’ve had marks on my arm because people have been grabbing me. I’ve been scared for my life at points.”

But Louis says he always tries to have a positive approach to life. “Dwarfism was thrown at me. I have to just learn to deal with it and get the most positive energy out of it. I’ve always just wanted people to just treat me like everyone else.”

Louis, who is especially inspired by Italian cooking, found that the Hungry For It kitchen could be easily adapted to his needs.

“Everyone at Hungry For It adapted really well and treated me like a contestant, like everyone else.

“In my case, I just needed a little bit more height, so they got a block which took about 10 minutes to build and then I was raised up a little bit. Then I had a station I could work at so I could reach everything on the countertop.

“I’m still at the same standard as everyone else in the kitchen regardless of if I’m small or tall. I still was doing knockout dishes. I didn’t need anyone’s help.”

‘There are people that don’t entirely understand my autism’

Outside of the Hungry For It kitchen, Jeremiah Josey’s love for cooking started with his grandmother. “She’s what inspired me to want to cook and bake because I would always go over to her house and make some scrumptious pastries and goodies with her,” he says.

Jeremiah – who attends the Culinary Institute of America in New York – is autistic and although he says he hasn’t faced any discrimination because of it, he worries that some people won’t understand him.

“I love being a pastry chef so much because I just love pastries and sweets. I have a huge sweet tooth. And I really enjoy the techniques and learning everything I can.

“But honestly I do feel that there are people in this world that don’t entirely understand my autism and how certain things work a little differently for me because I have autism.”

Some of the adaptations Jeremiah has at the culinary school include: extra tutoring so he can practise his techniques, more time for taking tests, a peer mentor and more education about autism for the chefs to help them understand how Jeremiah can perform best in the kitchen.

Jeremiah adds: “My advice for people with disabilities is, ‘Don’t let autism or any disability stop you from pursuing your dreams or achieving anything you set your mind to.'”

Jeremiah, who has written a book about his experiences as a black man with autism, says his favourite things to bake are cheesecakes, pumpkin pies, blueberry pies and cookies.

He adds: “One day in the future, I would like to open up my own pastry shop that will be famous for cakes, milkshakes, cheesecake and cookies. And I also hope to have my own cooking show.”

‘Gained confidence and independence’

“I’ve been into cooking for quite a few years now,” William, from Paignton, Devon, says. “I just really enjoy it and especially now because of all the pieces of equipment that we can use as well.”

William is living with cerebral palsy – the name for a group of lifelong conditions that affect movement and coordination – and is a wheelchair user. He says he’s gained a lot of independence through assistive technology, especially in the kitchen.

“I like cooking all sorts of things. I can cut up a lot of the ingredients that I couldn’t do quite so easily before.”

Some of the assistive technology he uses includes: a cooking hob and a sink that can be raised up and down to allow his wheelchair underneath, sticky mats and a cutting machine.

Rob, who manages the service called United Response that supports William, says: “We’ve got lots of equipment here for Will and others to use who may not have mobility or use of both hands, so it’s great to see Will building that confidence in the kitchen.

“Will has gained so much: his skills, his confidence, his enthusiasm to try new things again.”

William, who enjoys making homemade lasagne with fresh pasta, says he’d be keen to volunteer or work in a kitchen.

“I know Will’s got the enthusiasm and the dedication and the commitment to cook and have a go at anything in life,” Rob adds.

Dementia Patients Not Allowed To Use Toilet

June 22, 2022

Heather Lawrence was shocked at the state she found her 90-year-old mother, Violet, in when she visited her in hospital.

“The bed was soaked in urine. The continence pad between her legs was also soaked in urine, the door wide open, no underwear on. It was a mixed ward as well,” Heather says.

“I mean there were other people in there that could have been walking up and down seeing her, with the door wide open as well. My mum, she was a very proud woman, she wouldn’t have been wanted to be seen like that at all.”

Violet, who had dementia, was taken to Tameside General Hospital, in Greater Manchester, in May 2021, after a fall. Her health deteriorated in hospital and she developed an inflamed groin with a nasty rash stretching to her stomach – due to prolonged exposure to urine. She died a few weeks later.

Heather tells BBC News: “I don’t really know how to put it into words about the dignity of care. I just feel like she wasn’t allowed to be given that dignity. And that’s with a lot of dementia patients. I think they just fade away and appear to be insignificant, when they’re not.”

Tameside has not resolved Heather’s concerns but officials have offered to meet her.

New research, shown exclusively to BBC Radio 4’s File on 4 programme, has found other dementia patients have had to endure similar indignity.

Dr Katie Featherstone, from the Geller Institute of Ageing and Memory, at the University of West London, observed the continence care of dementia patients in three hospitals in England and Wales over the course a year for a study funded by the National Institute for Health and Care Research.

She found patients who were not helped to go to the toilet and instead left to wet and soil themselves.

“We identified what we call pad cultures – the everyday use of continence pads in the care of all people with dementia, regardless of their continence but also regardless of their independence, as a standard practice,” Dr Featherstone says.

She found some good practice – but time pressures and too few staff meant many felt compelled to use pads as a “workaround”.

When Bessie, 86, was taken into Rotherham General Hospital, in 2019, after falling at home, she had been continent. Despite this, her daughters Janine Ward and Susan Nurden say, staff were not responsive when Bessie asked to go to the toilet. Unknown to her daughters, the hospital had also placed her in continence pads.

“There was no way that my mum would soil herself,” Janine says. “She knew what she was doing. She would make a fuss she wanted to go to the toilet – and if you don’t respond in time, she’s going to get distressed and she’s going to shout for someone to come.”

Bessie should have been referred to the Rotherham NHS Foundation Trust’s continence team but never was.

Janine and Susan felt their mother’s continence and frail mobility put her at risk of another fall at home. They wanted her moved to a care home near them – but the hospital and social services disagreed. They said Bessie was incontinent and put in place a care plan to discharge her home with additional carers, commodes and continence pads (although, those never materialised.)

On Bessie’s first night back, Janine was with her when the carers arrived with the commode for the living room.

Janine says: “They sat her on it. The lounge curtains were still open, a big full picture window. I can’t explain how I felt.

“I said, ‘You have just put my mum on that commode with the curtains wide open, why didn’t you close them up?’ at which point they closed them. I would have thought that closing the curtains would have showed some respect for dignity, wouldn’t you?”

Contacted by BBC News, the trust and Rotherham council offered an apology to Bessie’s family and said patient care had subsequently been improved.

‘Become institutionalised’

Dr Featherstone says people with dementia often forget how to go to the toilet once they have been made to use pads.

“We do know that a lot of people living with dementia who go into hospital continent, leave the hospital with incontinence,” she says. “So just wearing a pad and those practices surrounding it can mean that people start to lose their continence.

“And that can have real implications for people later on. It might be difficult for families to care for somebody if they have to care for incontinence as well. And it might mean that people become institutionalised.”

Prof June Andrews, who has worked in dementia care for over 30 years, says rigorous continence assessments are essential to prevent assumptions being made.

“I certainly see paperwork where someone has asked the question perhaps of the relatives as to whether or not the patient is continent. And that’s the entire extent of the assessment that has taken place,” she says.

“It’s absolutely vital for families to know that they should ask whether or not a continence assessment has taken place and who has done it. It’s the kind of thing that will get missed if nobody’s asking questions about it.”

Dementia UK’s Director of Research and Publication Dr Karen Harrison Dening, who co-authored the report, said: “People, whatever their underlying conditions and whatever age, do not go into hospital expecting to become incontinent.

“Staff not only require targeted education on the specific ways they can promote an individual’s independence but health care organisations should be mandated and responsible for maintaining an older person’s autonomy.”

File on 4 – Dignity in Dementiais on BBC Radio 4 on Tuesday, 21 June, at 20:00, and Sunday, 26 June, at 17:00, and on demand on BBC Sounds.

Wheelchair User Dragged Himself Up Stairs ‘After Rail Staff Refused To Help’

June 22, 2022

A wheelchair user was forced to drag himself up stairs at a railway station platform, saying staff refused to help him owing to health and safety policy.

Chris Nicholson, an athlete and spokesperson for the Myprotein sports brand, was travelling to address an event in London on Friday when the incident took place at Milton Keynes station.

The former rugby player needed to cross to the other side of the station for a connecting train but the lift was broken, forcing him to pull himself up the stairs in 31C (88F) heat.

Nicholson said staff refused to help him use the stairs, saying they told him they couldn’t assist him because of “health and safety policies and they would be at risk if they helped me”.

“I decided to get up the stairs, how? By dragging my chair with one arm, pushing off one arm and collecting my legs each step of the way!” he wrote in a post on Instagram. He described being “in agony and tears halfway up”.

Nicholson said that another man had seen him struggling and helped him carry his wheelchair, before an assistant manager stepped in to carry his bags.

“We are in 2022, access should be a given not a privilege,” Nicholson said. He called for policies to change “to support everyone collectively”, adding: “Things like this happen daily to people with different types of disabilities.”

In a video, also posted on Instagram, Nicholson spoke in detail about why he shared his experience on social media. “People like myself who have different varying abilities to an able-bodied person should have the rights to access all amenities, like anyone else. Doesn’t matter if you are in a wheelchair, if you are on crutches – you should be able to access it,” he said.

“The fact that people aren’t making things readily available to those who are from different backgrounds, different abilities is wrong. The fact that things aren’t in place to cater for those is wrong, and the fact that people are getting treated differently is also wrong.”

Nicholson, who has more than 28,000 followers on Instagram, said that almost 3,000 people had messaged him saying that they had had similar experiences. “It’s absolutely shocking,” he said.

An Avanti West Coast spokesperson said: “We have been made aware of this incident and are sorry to hear about the customer’s experience.

“We have since been in contact with the customer – who has arrived at their destination safely on Friday night.

“We are also liaising with London Northwestern Railway – the train operating company responsible for managing Milton Keynes station – as they investigate the circumstances of what happened.”

London Northwestern Railway declined to comment.

Down’s Couple Marry After Shielding For Two Years

June 21, 2022

A couple with Down’s syndrome who stayed apart as they shielded through Covid are finally getting married.

Chris Miller popped the question to girlfriend Ffion Martin during the first national lockdown in 2020.

Thankfully Ffion said yes – only for Covid restrictions and the fact they were both shielding to put the wedding on hold.

However the wait is over for the happy pair from Carmarthen when they tie the knot in nearby Llansteffan on Saturday.

Professional actors Ffion, 22, and Chris, 39, met at Hijinx theatre company, which works with actors who have learning disabilities.

After two years of dating, Chris proposed, but during the second lockdown they were asked to shield as they were both considered clinically vulnerable.

‘Very big party’

It meant they were kept apart, using the phone as their only means of communication until lockdown rules were eased.

Ffion believes this weekend’s wedding is a cause for a double celebration.

“We’re going to have a very big party and I’m having a red carpet. I’m really looking forward to it,” she said.

“We’ve had a difficult period, but we got through it.”

Family and friends have been busy making final preparations for the service at Llansteffan Memorial Hall.

The tables are laid, with balloons blown up and wedding favours for guests on each seat.

“We’ve had lots of time to prepare,” said mother of the bride Janice Martin.

“Really we just want them to have a gorgeous wedding. All they want to do is get married and have a party. They don’t care what’s on the table.

“But we just wanted it to be special, so we’ve worked hard.”

Being Disabled And Gay In Pride Month

June 21, 2022

“I am gay, disabled and from the valleys – of course I’ve faced barriers.”

Paul Davies was the first Mr Gay Universe who had a physically disability and was often told he could not follow his dreams.

He said while he grew up with support, other people were not as lucky and young people needed to be empowered to ensure they are not forgotten.

One charity said 40% of LGBTQ+ people in the UK identified as disabled.

The most recent figures showed the amount of people in Wales who did not identify as heterosexual was about 5.6%.

Co-founder of the charity ParaPride, Daniele Lul, said “cultural barriers” had a real impact on people.

Paul, from Treherbert, Rhondda Cynon Taf, was born without a left hand and said before becoming Mr Gay Wales and Mr Gay Universe he did not realise how severe sexual discrimination was.

He said he always wanted to be a performer and is a former Red Coat at Butlins, a drag artist and TV presenter, alongside campaigning for disability and LGBTQ+ rights.

“I am gay from the Welsh valleys, from a mining community, and born in the 80s amongst a group of people that were fighting for their right to work, but I was also a disabled young man as well,” he said.

“I think, without realising, I was facing a lot of barriers.”

He said while he had a supportive family and school, people did assume he was less capable than he was, which did knock his confidence.

“Growing up was difficult sometimes, and I’ve faced my share of discrimination and stereotyping,” he said.

“One moment that has stuck with me was a teacher telling me that my disability would hold me back from achieving my life and career ambitions.

“For me, I’m a very confident person now, but I wasn’t always like that and having specialised support would have really helped me when I was starting out.”

He wants to empower young people who are also both LGBTQ+ and disabled but said other people needed to make effort to support then and investments needed to be made to make training and workplace environments more inclusive.

He said programmes such as ReAct, which helps people out of work gain new skills, was one way to make a difference as disabled and LGBTQ+ people were more likely to struggle at work.

“For an LGBTQ+ disabled person the constant stresses, anxieties and pressure associated to constantly proving their ability and breaking stigmas is heightened and this can become tiring if you consider their disability and fact that they are continually having to adapt to the world around them every day.”

He said it was common knowledge that people with disabilities faced more barriers in the workplace but LGBTQ+ people also struggle, particularly as they are more likely to suffer from mental health issues.

He said: “Investing in more LGBTQ+ training can help remove stigmas and barriers faced by individuals and help improve workplace culture to be more open and inclusive.

“By striving to be more inclusive in our workplaces, surroundings and our communities we can show that every person belongs.”

‘People assume you’re asexual if you have a disability’

For Daniele, who had both legs amputated at 40 after having meningitis, a lot of the stigma that falls on to LGBTQ+ people who are also disabled comes from people thinking they do not feel and function in the same way as everyone else.

“LGBTQ+ is an umbrella term but with disability it’s just that one word and it can mean so many different things, so for many people who identify as both it can be tough.”

He said there was an “obvious need” for a charity like ParaPride as even in physically inclusive spaces there were still “cultural barriers” that meant people were treated differently, such as people talking down or assuming they needed aid.

He said because gay communities in general could often be quite image-focused, he in particular found it difficult to adjust after his amputation and finding his place.

https://emp.bbc.co.uk/emp/SMPj/2.44.15/iframe.htmlMedia caption,

“People assume I can’t be gay because I am disabled”

“It is very interesting because sex is a favourite topic among the LGBTQ+ society but disabilities are often left out of these conversations and considered incompatible to sex-related topics,” he said.

“People are still very uncomfortable and it’s also almost easier to think of disabled people as asexual.”

Asexuality means people who experience little or no sexual attraction to others.

He said more support needed to go into education and having discussions around intersectional LGBTQ+ people but also people within the community needed to be educated.

He said while attitudes would not change overnight, having the conversations would help make “us feel and be included”.

“People are disabled only by the barriers that are presented by society and it’s really important to put that message across.”

Deaf Teaching Assistant’s Pride At Landmark Job

June 21, 2022

A deaf teaching assistant is to work with a deaf pupil for the first time in a mainstream school in Wales.

Emma Day, 21, said she felt proud to have been appointed at Ysgol Clydau in Tegryn, Pembrokeshire.

There she will work with 11-year-old Evelyn who also has lessons translated by British Sign Language interpreters.

“The most rewarding thing is seeing Evelyn’s confidence grow and how she enjoys learning through her first language, sign language,” Emma said.

Emma has previously volunteered in schools in Pembrokeshire and was awarded Student of the Year at Pembrokeshire College in 2021.

Now she believes her experiences as a deaf learner will help Evelyn and hopes it will be an example of the “next step” in education for deaf children.

“I love my job. It’s really important for deaf students, deaf children, to have education in their first language and also working with adults like myself,” she said.

“I’ve got experience of the barriers I faced at that time and I got through them. Hopefully I’ve passed on to Evelyn that you can break down those barriers and learn.”

Emma’s role is funded by Pembrokeshire council, but has extra support from a sign language interpreter in the classroom to translate lessons and access all other aspects of her role within the school.

“She helps me with my English and my maths and my sign language as well. She knows what I’m saying when I communicate,” said Evelyn.

Her father, Chris, said the support was worth the struggle to secure it.

“It’s really important, especially in a rural setting, if you are deaf. You need that exposure to deaf culture,” he said.

“There are a lot of barriers that deaf people face and Emma is well aware of what those are and she’s helping Evelyn navigate what those might be in her future as well.

“You can really see how Evelyn’s confidence has increased. She signs more at home, which is really beneficial to me as Evelyn gets older I expect to get left behind somewhat in being able to understand her level of British Sign Language.

“So it’s just lovely to see Evelyn blossom, especially with the move up to secondary school coming soon it’s just going to benefit her so much.”

Same Difference Is 15!

June 21, 2022

Same Difference is 15 today!

It’s hard to believe but as a THANK YOU to every single reader for every single hit, we are linking to our top 15 posts of all time.

 

1. Our Home Page

2. DWP To Terminally Ill Claimant: If You Don’t Die Within Six Months, We’ll Prosecute You

3. Finding A Job When Colour Blind

4. Is Dyslexia A DisAbility?

5. New PIP Descriptors For ‘Planning And Following Journeys’ From 16 March Will Exclude MH Claimants

6. Father Takes Son With Mental Age 5 To No 10 To Tell PM ‘If He Can Work, You Give Him A Job’

7. Jono Lancaster Follow Up: So What If My Baby Is Born Like Me?

8. Inspirational Music Videos For DisAbled Music Fans

9. Why People With Learning DisAbilities Shouldn’t Have Children

10. Some 2016 And 2017 PIP Awards Being Assessed Early

11. YouGov Are Asking Whether Benefit Claimants Should Be Allowed To Vote

12. What PIP Telephone Assessments Are Really Like, Part Two

13. On Universal Credit? No Allowances For Holidays

14. DVLA Website Lets Visitors Check On Neighbours Benefits

15. Flowers For The Fallen Of ATOS

Readers, here’s to the next 15 years!

 

Poem For Manchester Arena Bomb Survivor After He Completes Kilimanjaro Challenge

June 20, 2022

One week after a Manchester Arena survivor conquered Mount Kilimanjaro in a wheelchair, poet Tony Walsh has penned a poem to recognise his achievement.

Martin Hibbert from Chorley, Lancashire, was one of the closest people to the bomb to survive the 2017 blast but was left paralysed from the waist down.

He used a specially-adapted wheelchair as he spent five days scaling Africa’s highest mountain in Tanzania.

Sign Language 999 BSL Service Launched For Deaf People

June 20, 2022

A new service has launched to allow people to make 999 calls using British Sign Language (BSL) for the first time.

The new service, 999 BSL, will allow deaf people to make emergency calls using an app or website, connecting callers with a BSL interpreter.

It is free to use and operates 24 hours a day, seven days a week.

Ofcom announced telephone and broadband companies must carry the service last June, estimating it would save two lives a year.

The system, which launched on Friday, is the first time a 999 emergency service will be available in British Sign Language, though a similar process exists for the NHS 111 number.

People who use the service will be put through to a BSL interpreter, who will then relay the conversation to a 999 operator.

A text service for 999 already exists, though users have had to register for that prior to use.

The new sign language-based service does not require registration, meaning callers can use it as long as the app or webpage is open.

To make a call with 999 BSL, users need to open the app or webpage, then press a red button that will connect them to an interpreter.

A number of charities and organisations have been campaigning for the service.

Abigail Gorman, public affairs and policy manager at SignHealth, the deaf health charity, said: “This is a breakthrough for deaf people that will save lives and means one more step forward towards equality.

“We won’t be satisfied until deaf people have full and equal access, particularly to life saving health services.”

James Watson-O’Neill, the chief executive of SignHealth, said the service was important for everyone and not just the deaf community.

“Deaf people can now contact emergency services directly and assist anyone in need of help. This is a huge breakthrough in terms of access and a moment worth celebrating,” he said.

Arthur Hughes: First Disabled Richard III Is ‘Big Gesture’ From RSC

June 20, 2022

Sir Antony Sher, Robert Lindsay, Ian Richardson and Christopher Plummer are just a few of the consummate actors to have played one of the most prized roles in English drama, Shakespeare’s deliciously evil Richard III.

But although the Machiavellian anti-hero had scoliosis, a curved spine, none of the esteemed actors to have played Richard at the Royal Shakespeare Company (RSC) has had a physical impairment themself.

The days of “cripping up” – a term disabled actors regularly use to describe those with no physical impairment playing disabled characters – appear numbered now, though, with Arthur Hughes taking on the coveted role later this month.

He is not the first disabled actor to do so – Mat Fraser played Richard at Hull Truck, in 2017, and Daniel Monks took on the role in Dick at the Donmar, in 2019 – but it is a first for the RSC.

“We need to have more disabled Richards. This is a big gesture from the RSC… taking disability representation seriously,” Hughes says.

“Richard is one of the most famous disabled characters in the English language. I’ve always wanted to play him. I think a lot of disabled actors will think playing Richard is their birthright.

“Every time a disabled actor plays Richard, it’s an important step for representation.”

Hughes, who has radial dysplasia and identifies as “limb different”, clearly cannot wait to get his teeth into arguably his most challenging role to date.

Since leaving drama school, his experience of landing acting work has been largely positive, he tells BBC News, with roles in plays such as One Flew Over the Cuckoo’s Nest, at Sheffield’s The Crucible, and Saint Joan, at London’s Donmar Warehouse.

His TV credits include British Academy of Film and Television Arts (Bafta) award-winning Channel 4 drama Help and Netflix’s The Innocents.

Hughes is currently undergoing the ideal preparation for his upcoming role – playing a younger Richard in the RSC production of War of the Roses.

But the actor, from Buckinghamshire, was not always so confident.

While at drama school, in Wales, he noted “there wasn’t much of a precedent” in terms of disabled actors he could look up to.

“It was only after I graduated that I saw Ruth Madeley [who uses a wheelchair] in BBC One’s Years and Years,” he says. “Here was an actor with a disability and no-one’s referencing it. It’s not a part of the story. She is just there.”

Earlier this year, Hughes played a disability-rights campaigner in BBC Two’s Then Barbara Met Alan, opposite Madeley, who has spina bifida.

But while he feels a responsibility to play roles where disability takes centre stage, Hughes also wants to be seen in productions where the character just happens to have a physical impairment.

“I think it’s good to play those parts [where disability is a key part of the role] but it’s also good for disabled actors to play characters where it’s incidental and disability is not specified,” he says.

“That’s the next step, where representation will be really ubiquitous and powerful. Disability is obviously an important part of your identity, but not the only part.

“Why not have a disabled Macbeth?”

Othello syndrome

Like the RSC’s outgoing artistic director, Greg Doran, Hughes believes “disabled characters should be played by disabled actors”, with the days of those with no mobility impairment hunched over a cane to portray Richard presumably numbered.

“You don’t have white actors playing Othello anymore. Time has moved on,” he says.

Doran’s late husband, Sir Antony Sher, took the role of Richard at the RSC back in 1984 – but last month the director told the Times: “Tony’s performance now would probably not be acceptable.

“It’s the Othello syndrome isn’t it? That moment when white actors stopped thinking of Othello in their repertoire, because it was not acceptable to have blackface any more, at least until the level playing field is achieved.

“It’s the same with disabled actors and Richard.”

Actor Simon Callow, in a letter to the Times in response, disagreed over disabled casting, writing: “The theatre is a gymnasium of the imagination. Both actors and audiences stretch their imaginations there. Remove that element and you have a mere moving photograph”.

The debate rages on but while directors can choose to move with the times, Shakespeare’s script will always be stuck somewhere around 1592.

‘Drunk on power’

In the play, Richard calls himself “I that am rudely stamped… deformed, unfinished, sent before my time”.

How did Hughes handle the language?

“I’ve said openly in the rehearsal room that when we are talking, we have to make a real distinction with the language we use and the language that is used in the play – because it is horrible. We put a moratorium on the word ‘deformity’ unless it was in the text,” he says.

Matthew Duckett, who plays Catesby, one of Richard’s acolytes, is also disabled.

“We’ve got two disabled people in the room. We need to be open about this… and just make it safe, that we know the rules. But you need disabled voices in the room to do that,” Hughes says.

And having a physical impairment brings an understanding to the role an actor without one could never have.

“Not often, but people can judge me, or I will be stared at or underestimated… and maybe pigeonholed. It is ingrained in some people that there is a hierarchy and if you are disabled you are at the lower end of that hierarchy. All those things, Richard experiences,” Hughes says.

“To draw on that is a different thing to manufacturing it, to putting on a hump and a limp.

“It’s a disabled body on stage playing Richard. Immediately, the work is done. I understand what it is to be in this body.”

And Richard turns his physical impairment to his advantage.

“People can’t pin him down. Throughout the play, he deals in rumours, lies, gossip, duplicity, and to live as this weird changing shadow is useful to him,” Hughes says.

“He’s existing outside this society that doesn’t fully accept him. And that’s where I think he makes the decision, ‘If I’m not going to be accepted in society, I might as well play by my own rules. If these are the rules of this club, I don’t want to be in it.'”

At the same time, there are many other aspects of Richard’s personality and motivations Hughes is looking forward to showcasing.

“The main character may be disabled but one of the more tantalising things about the play is the rise of a tyrant, someone who wants power but is not fit for it,” he says.

“It’s about leaders who are frightening and paranoid and drunk on power and will do anything to… keep it. That’s the timeless thing about this play.”

Richard III will run at the Royal Shakespeare Theatre from Thursday 23 June to Saturday 8 October.

Gatwick: Passenger With Restricted Mobility Dies Leaving Flight

June 17, 2022

A passenger with restricted mobility has died at Gatwick Airport after leaving an aircraft.

Gatwick said staff were helping to disembark three passengers with restricted mobility at the time, including the man’s partner.

He decided to leave the EasyJet plane rather than wait for staff to return and fell while going up an escalator, an airport spokesman said.

The airline confirmed the death of the man on Wednesday.

The Gatwick spokesman said the passenger made a short walk to the escalator from the runway to the Skybridge, which takes passengers to the north terminal.

He said EasyJet cabin crew were closest to the man, so provided medical attention before the airport’s medical staff arrived.

An airline spokesman said: “A number of our cabin crew provided medical assistance to a passenger at Gatwick Airport whilst waiting for paramedics to arrive.

“However the passenger sadly later passed away.”

Gatwick said a formal investigation was under way.

It said when the aircraft arrived a member of staff was deployed from Wilson James, a company which provides assistance for passengers with restricted mobility.

The staff member “was in the process of disembarking the three PRM [passengers with restricted mobility] passengers when the incident occurred,” it said.

“Staff shortages were not a factor in this incident.

“It is normal for one staff member to disembark three passengers who require assistance by taking them one at a time the short distance to the waiting buggy.”

Letter to Editor: It’s time to make a stand

June 17, 2022

Dear Editor, 

It’s time to make a stand.  

Did you know that one in seven diagnosed with ovarian cancer each year die within two months after diagnosis? We are being failed. Enough is enough. 

On Tuesday 28 June I am marching to No 10 Downing Street, alongside Target Ovarian Cancer campaigners, to hand in our open letter signed by 20,000 people. Together, we’re demanding the government takes action on the awareness crisis in ovarian cancer.  

In 2019 I was working long hours in the City of London. With a daily commute, busy lifestyle and regularly visiting my sick mum, I was tired. But, like many women, I ignored this and continued on. Then one night, I felt a painful lump in my tummy. It was a tumour. I was later diagnosed with stage IIIa ovarian cancer. 

For me, ovarian cancer affected my whole body. My right leg bloated due to deep vein thrombosis and a clot on my lung was discovered. I had intense surgery to drain my kidneys and remove the tumour, as well as a total hysterectomy and many other procedures. I then underwent six rounds of chemotherapy.  

Ovarian cancer changed my life, and with no screening in place it is essential that we are all armed with awareness of symptoms. This means the cancer can be found earlier, and outcomes are significantly improved. No one should die because of a late diagnosis. 

Four out of five women cannot name the key symptom of ovarian cancer, bloating. This needs to change. 

I’m writing to ask your readers to take just two minutes of their time to learn the symptoms and spread the word to their families and friends: persistent bloating, feeling full or having difficulty eating, tummy pain, and needing to wee more often or more urgently.  

Become part of this movement to make change happen in government today by campaigning to improve the lives of people affected by ovarian cancer.  

With best wishes, 

Catherine Hunt 

30 Angel Gate, City Road, London EC1V 2PT  

Wheels And Wheelchairs

June 17, 2022

Roller skating isn’t necessarily an activity a lot of wheelchair users might expect to take part in, but Wheels and Wheelchairs is helping to change that.

The group brings together wheelchair users and skaters to speed around London and enjoy the sensory rush, collaboration and fun that accessible sport can bring.

They meet every Saturday to skate around Battersea Park. There are other routes, distances and speeds as well, like the fast Friday Night Skate and the slower Sunday Stroll. And they also organise longer routes for keen enthusiasts, like Bath to Bristol, and even roller marathons abroad.

Some of the members spoke to the BBC’s Jenna Abaakouk about why they enjoy it so much.

Disabled Kenyan Singer Goes To Court Over Rejected Presidential Candidacy

June 16, 2022

A gospel singer who wants to be Kenya’s first disabled presidential candidate has brought a case in the country’s courts after being barred from the electoral race.

Reuben Kigame, who is blind, filed against Kenya’s Electoral Commission (IEBC) last Tuesday, claiming he had been blocked from entering the 9 August election.

Kigame’s campaign team claims the IEBC discriminated against him and that the commission had provided no credible explanation for his disqualification.

They allege that commission officials gave Kigame the runaround when he tried to submit his paperwork and kept him waiting for hours before declaring he had missed the deadline.

Kigame said he had met the requirements to stand as an independent candidate, gathering 48,000 signatures and voter IDs from across the country. “It was like I was a non-entity,” he said. “It’s really sad that I’d have to fight for inclusion like this.”

Kigame said the head of the commission, Wafula Chebukati, admitted to him in a meeting on Sunday that there were no systems in place to accommodate candidates with a disability.

Gitobu Imanyara, a Kenyan human rights lawyer present at the meeting, said Chebukati’s admission “was an outright acknowledgment of the commission’s breach of its obligations as a public body, for which they should be held accountable”. Imanyara said Kigame had been placed at a disadvantage and that his constitutional rights had been violated. The IEBC did not respond to the Guardian’s requests for comment.

Kigame has received muted support from Kenyans, although a group of young people camped outside the Electoral Commission’s building in a silent protest last week. They draped white cloths over their eyes as a symbol of Kigame’s blindness and political vulnerability and held placards that read: “No Kigame, no elections”.

Kigame, a former schoolteacher, is known for many different things, said Sungu Oyoo, a writer and social activist. He is a veteran gospel singer whose music is famous in churches across the country. He is also known for his support of young talent through his music academy and work with #LindaKatiba, a citizen movement to defend the constitution. He is also considered a trailblazer in disability activism through his presidential bid.

He first entered national politics in 2013, when he ran for a gubernatorial seat in Kenya’s western Vihiga county and came in fourth. He says people discouraged him from going into politics, saying it was too “dirty” for a Christian leader. “But that’s the reason I want to go into it – because it needs a clean-up,” said Kigame, whose politics are influenced by Martin Luther King Jr.

“In Kenya, 59 years of doing things the same way have not delivered economic stability – or dealt with the three issues we faced at independence: ignorance, poverty, and disease,” he said. His campaign pledges to prioritise the basic needs and rights of Kenyans, calling out the current government’s focus on infrastructural development over the welfare of citizens.

Despite Kigame’s accomplishments, some still struggle to see beyond his disability. His campaign team have faced such questions as: “How would he be able to inspect the presidential guard?”

“There’s a poor cultural perception around people with disabilities,” Kigame said. “Many people only know blind people as people in need.” At least 900,000 Kenyans are disabled, according to the 2019 census, yet the country has little to no infrastructural accommodation for them, leaving people socially and economically marginalised.

Caroline Pereina, of Kenya’s Society for the Blind, said that since Kigame began his campaign, she had seen people show more interest in what it is like to live with a disability. “His candidacy was historic for the disabled community. It felt like we were finally being seen and heard, so it was a really sad day for us when we heard that he was disqualified,” she said. For her, his exclusion from the race mirrored her daily experiences.

August’s election is considered a two-horse race between the populist candidate and current deputy president, William Ruto, and the longtime opposition leader, Raila Odinga. Mark Bichachi, a political analyst, said: “For those of us in the city, we may understand that Kigame’s candidacy was a big step in terms of Kenya coming of age. But if you’re in politics, you also know that there’s no possibility of a fringe candidate getting the 50%-plus votes needed to clinch the presidency.

“Around elections, you’ll hear the common Kenyan sentiment ‘Sitaki kutupa kura’ – Swahili for ‘I don’t want to waste my vote’,” said Bichachi. “Kigame just didn’t have the numbers.”

However, Wanja Njuguna, a Kigame supporter, said discussions about his chances were not the issue “It’s not about whether or not he would win,” said Njuguna. “It’s about whether he met the requirements for running – which he did.”

With his name not on the ballot, Kigame said his sponsors were pulling out, but he has carried on, holding town-hall meetings and sharing his plans for the country as he waits for the court’s judgment.

National Deaf Children’s Society Urges NHS Trusts To Use Clear Face Masks

June 16, 2022

 

The National Deaf Children’s Society has written to every NHS trust in England urging them to start using transparent face masks because standard ones create a “serious communication barrier” for deaf patients.

The letters, co-signed by the British Academy of Audiology, said deaf patients could “miss vital information about their health” as opaque masks make lip reading impossible and facial expressions difficult to read.

It is likely that face masks will remain widespread in the NHS, as new guidance issued at the start of June states they will still be required in a number of settings, including cancer wards and critical care units, and staff may wear them in other areas depending on personal preference and local risk assessments.

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Susan Daniels, the chief executive of the National Deaf Children’s Society, said: “Transparent face masks are fully approved and they could transform the healthcare experience for deaf people. However they communicate, almost all deaf people rely on lip reading and facial expressions. Opaque face masks make these techniques much more difficult and this could seriously affect communication at a time when they might need it the most.”

The charity has written to each NHS trust’s CEO saying clear masks could be considered “a reasonable adjustment under the Equality Act”, and reminding them there are about 9 million people who are deaf or living with hearing loss in England. It said deaf people were struggling to communicate in medical appointments and at risk of serious consequences as a result.

Their call comes after a planned pilot of transparent masks by the Department of Health and Social Care was cancelled.

Three types of transparent masks, designed not to fog up, are now approved for use as PPE in healthcare settings, and although they are not currently available on the NHS supply chain, they can be bought direct from suppliers. The government previously delivered 250,000 clear masks to frontline NHS and social care workers in September 2020.

“Medical appointments can already be very stressful, so no one should have to endure an exhausting struggle just to understand the advice they’re being given,” Daniels said. “Every trust in the country needs to make the investment now because it really could be gamechanging.”

The Department of Health and Social Care has been contacted for comment.

Man Left Paralysed By Manchester Arena Bomb Conquers Mount Kilimanjaro

June 15, 2022

A man left paralysed by the Manchester Arena bomb has conquered the summit of Africa’s highest mountain in his wheelchair.

Martin Hibbert, 45, broke into singing and dancing as he reached the peak of Mount Kilimanjaro with his support team of helpers and local guides.

Hibbert and his daughter Eve, then aged 14, were 5 metres away from suicide bomber Salman Abedi when he detonated his device five years ago last month.

Hibbert’s spinal cord was severed by shrapnel in the bombing, which left 22 dead and hundreds injured.

Hibbert launched the mission to scale Mount Kilimanjaro as he wanted to “move mountains” for disabled people. He has already raised around half of the £1m target of donations for the Spinal Injuries Association.

Speaking after reaching the 5,895-metre-high summit, he said: “I could just see the sign at the top. I didn’t know whether to laugh, cry … It was such a relief to get there and know that we had done it. Something I will always remember. Just so proud.

“I said we will all come back as different people and I certainly will do, just the love and that. I’m definitely a different person going home and I think everyone else will be as well.”

At the summit Hibbert spread some of his mother’s ashes while playing her favourite song, For All We Know by the Carpenters. She died in November last year, and Martin said: “I said she was going to be with me. Love you, mum.”

In January, the former football agent told the Guardian he wanted to inspire a “revolution” in how Britain thinks about people with disabilities.

He said he had been shocked by the everyday hurdles that people in wheelchairs must overcomes in public spaces such as restaurants, hotels and shops.

Speaking after the Kilimanjaro ascent, he added: “You know it doesn’t stop here. We’ve climbed a mountain but we now need to move mountains to get what we need in terms of social care change, changes in accessibility, things like that, so I’m going to need all these people to continue giving me that love and support.

“That’s why I’m doing this to show, don’t write off somebody because they’re in a wheelchair, look at what they can do when they’ve got the right help and support. They can climb Mount Kilimanjaro.”

Lizzo Changes Derogatory Lyric After Backlash

June 14, 2022

Pop star Lizzo has changed the lyrics to her latest song after fans complained it used an ableist slur.

Grrrls, which was released last week, originally contained a derogatory term for a form of cerebral palsy known as spastic diplegia, in the first verse.

Fans said they were “shocked” and “disappointed”, and asked her to re-record the song with alternative words.

The star took the criticism to heart and released a new version omitting the “harmful word” on Monday night.

“Let me make one thing clear: I never want to promote derogatory language,” she wrote in a statement posted to social media.

“As a fat black woman in America, I’ve had many hurtful words used against me so I understand the power words can have (whether intentionally or in my case, unintentionally).”

The hastily reworked version of Grrrls now includes the lyric “hold me back” in place of the original. Lizzo said the change was “the result of me listening and taking action”.

“As an influential artist I’m dedicated to being part of the change I’ve been waiting to see in the world.”

The new version has already replaced the original on streaming services including Apple Music, Spotify and YouTube, the BBC has confirmed.

Over the weekend, fans criticised the singer for her choice of lyrics, pointing out that the offensive term had often been used to attack people with disabilities.

Among them was Hannah Diviney, who contacted Lizzo on Twitter to explain why the word had upset people.

“Cerebral palsy is literally classified as spastic diplegic cerebral palsy, which basically means that I have spasticity, or tightness, in my legs specifically,” she told the BBC.

“It’s something I can’t control and it makes my life quite difficult and painful. Seeing that word used to suggest someone has lost control or had an emotional outburst is really weird because that’s not at all what it’s like; and that’s not at all what my life as a disabled person is.”

Diviney posted a message on Twitter after Lizzo changed the lyric, describing her as a “real true ally”.

Other disability advocates praised the singer for her actions.

“Proud of Lizzo for listening to the disabled community and amending her song,” wrote Calum Stephen. “Everyone makes mistakes – what is important is how we respond to them.

“She could’ve said and done nothing, or gaslit the disabled community and vanished, but she didn’t. This should be the precedent.”

“This is the Lizzo I know and love,” added screenwriter Daneka Etchells. “True accountability and allyship here. Thank you for listening and just recognising our hurt and anguish.”

UK Doctors With Long Covid Denied PIP

June 14, 2022

With many thanks to Benefits And Work.

The Guardian is reporting that doctors who contracted Long Covid whilst working in the health service are being denied PIP, with some saying they will have to sell their house as a result.

A respiratory consultant who contracted Covid working on a ward in November 2020 applied for PIP in June 2021 after developing Long Covid.  They were refused PIP despite having urinary incontinence, difficulty standing, preparing food, eating, washing, dressing or engaging with people face to face.

“I thought that I had illustrated quite clearly what my disability was,” they said. “When I got the report back, I thought ‘is this about me?’”

They also said that the process of making the claim was so taxing it made them ill.  They have now used almost all their savings on private treatment and are now considering selling their home.

An infectious disease expert who developed long covid had their claim rejected in part because they can drive a car, which the assessor said showed they had “significant physical function” and “substantial cognitive powers”.

In fact, the healthcare worker had been obliged to sell their manual car and get an automatic with additional assistive features because Long Covid had affected their ability to drive.

The Benefits and Work guide to claiming PIP includes advice on how to anticipate and challenge the claim that being able to drive a car is evidence that you aren’t eligible for PIP.

Th expert has now requested a mandatory reconsideration of the decision that they are not entitled to PIP.

You can read the full story in the Guardian.

Nurses, OTs, Physios And Pharmacists Can Issue Fit Notes From Next Month

June 14, 2022

With many thanks to Benefits And Work.

 

Nurses, occupational therapists, pharmacists, and physiotherapists will be able to issue fit notes from 1 July, as the government tries to reduce pressure on overstretched GPs.

However, the DWP stressed that fit notes can only be issued following an assessment of a person’s fitness for work, so cannot be issued on request or via over-the-counter services. 

This change, along with the introduction in April of digital fit notes which do not have to be physically signed in ink, should make the process of getting a fit note simpler for some claimants at least.

You can read the full press release on the changes to fit note certification here.

Atos Employ Just 3 Doctors To Carry Out PIP Assessments

June 13, 2022

With many thanks to Benefits And Work.

 

Atos employ just three doctors out of a total of 2,000 health professionals who carry out PIP assessments, the company revealed in evidence from the three main assessment providers given to MPs last week.

Atos and Capita carry out PIP assessments, whilst Maximus are responsible for the work capability assessment (WCA) for ESA and universal credit.

All three companies were giving evidence to the work and pensions committee last month.

Dr Barrie McKillop, Clinical Director at Independent Assessment Services (Atos) told the committee

“We have about 2,000 health professionals in the IAS team, including those directly employed by ourselves and some from our partners.”

He went on to say that:

67% are registered general nurses,

17% are either registered mental health nurses or registered learning disability nurses

15% are occupational therapists, physiotherapists or paramedics, in roughly equal proportion

He added “We also have three doctors working in the service.”

Capita said they have “1,000 ex-NHS professionals” but gave no breakdown of their specialisms.

Maximus said they have 1,100 health professionals, down from a peak of 1,200 before the pandemic.

Many readers will be astonished that so few doctors are employed as part of the team that carries out PIP assessments, given the proportion of claimants who have multiple, complex and often variable conditions. 

The fact that adverts for doctors to carry out assessments currently offer starting salaries of £77,000 plus private health insurance and other perks does suggest though, that doctors are an expensive commodity.

You can read the full transcript of the evidence sessions here.

Airports Told To Stop Failing Disabled Passengers

June 13, 2022

Airports must stop failing disabled passengers or they could face legal action, the UK regulator has warned.

The Civil Aviation Authority (CAA) said it understood the recruitment challenges facing the industry but some recent incidents were “unacceptable”.

In some cases disabled passengers had been left waiting hours on planes for help to get off, it said.

The industry has been struggling with staff shortages in recent months.

Airlines and airports cut thousands of jobs during the pandemic, when Covid restrictions virtually shut down international travel.

However, since the demand for flights has returned they have found it difficult to recruit and train new staff quick enough, leading to delays and cancellations.

In a letter to airports, the CAA said assistance was continuing to be provided in a timely manner “for the vast majority of passengers”.

But the regulator said it was “disappointing” there had been a “dip in performance at some airports” in recent months, with more disabled and less mobile passengers having to wait longer for assistance than usual.

It said it was “very concerned” about increased reports of “significant service failings”, including passenger’s wheelchairs not being unloaded in a timely manner and disabled individuals being helped off planes hours after other flyers.

The CAA added that a higher proportion of passengers at some airports were also using assistance services, although the cause of this increase in demand was not clear.

The regulator said it would be asking all airports with a high number of passengers using assistance services to set out by 21 June what measures they had taken to stop “significant service failures happening in the future”.

“We will continue to closely monitor the quality of service provided and if these significant service failures continue, we will consider what further action is needed, including using enforcement powers,” it added.

The CAA has powers to investigate and prosecute breaches of aviation rules and some breaches of consumer protection requirements.

Earlier this week, one disabled passenger, Victoria Brignell, said she was left on a plane at Gatwick for more than an hour and a half after it had landed, despite booking assistance three months in advance.

Another wheelchair user said he waited more than two hours for someone to help him disembark at Manchester Airport.

Both airports apologised, with Manchester blaming staff shortages.

BBC security correspondent Frank Gardner, who uses a wheelchair, said such situations were becoming “depressingly familiar”.

“The airports seem to be slipping back. The level of investment and effort that goes into making money at these airports isn’t matched by the effort and money that needs to go into getting disabled passengers off the plane at the same time as everybody else,” he said earlier this week.

UC Claimants Illegally Forced To Repay Entire Award By DWP

June 10, 2022

With many thanks to Benefits And Work.

 

Claimants are being illegally forced to repay their entire universal credit (UC) award even though they were fully entitled to it, the Child Poverty Action Group (CPAG) has revealed.  Third party debt collectors are even being used to carry out the unlawful recoveries.

According to CPAG, the DWP relaxed some of the evidence rules for UC claims during the pandemic. 

But in January 2021 the DWP began a process of reverification, looking again at those claims and making a decision about whether they were legitimate. 

This process is to be ramped up dramatically, with the DWP announcing it will establish a team of 2,000 staff to look again at 2 million claims over the next five years including, but not limited to, claims made during the pandemic.

CPAG says that they are hearing from an increasing number of people who have had their UC stopped, have been ordered to repay all the UC they received in the past and who often don’t understand the reasons for the DWP’s decision or how they can challenge it.

CPAG say that they have serious concerns about the process, including:

Claimants who appear to be fully entitled to what they received being ordered to repay all their UC.

The DWP’s approach to retrospectively deciding claimants were not entitled and beginning recovery is unlawful.

Claimants are not given enough information to understand why the DWP think they have been overpaid or how they can challenge the decision.

The DWP asked for evidence of entitlement via the online journal, even from claimants who were no longer getting UC and would have no reason to check their journal.

Some claimants only finding out about the alleged overpayment when they received a letter from DWP Debt Management, therefore missing the one month deadline for challenging a decision and not knowing that they could make a late challenge if they have good cause.

Some claimants who do challenge the decision make repayments they do not need to make whilst waiting many months for the DWP to carry out a mandatory reconsideration or may face demands from third party debt collectors.

CPAG are asking the DWP to make a range of changes, including pausing the recovery of overpayments whilst a decision is being challenged, as happens with other benefit,s and making decisions that actually comply with the law.

CPAG have been around for over 50 years.  They write handbooks that are relied upon by anyone connected with welfare rights and take numerous cases to court on behalf of claimants.  They are not headline seekers or sensationalists.  

If they say that the DWP is acting unlawfully, you can rely on it being true.

The thought that a government department that behaves like this is to be given powers of  search, seizure and arrest, along with the right to impose fines where there isn’t sufficient evidence for a criminal trial, is truly frightening.  

You can read the full story on CPAG’s website

Benfleet Wheelchair User And Family ‘Trapped’ On Train

June 10, 2022

A wheelchair user was trapped on a train after staff failed to turn up with a ramp despite him booking assistance.

Josh Hamilton ended up travelling on the service until it terminated when he could not get off at his stop at Benfleet in Essex.

Mr Hamilton said he was “dreading” travelling by rail again.

Train operator c2c has apologised but said staff were not available because of disruption at the station.

The IT worker, his wife and their two young children were on the 18:37 from Upminster in east London on 29 May after a shopping trip when the train arrived at Benfleet.

“The doors opened and everybody’s running off the train and there was no-one standing there with the ramp for me,” he said.

“There was no-one there to talk to or to do anything and before you know it, the train starts leaving and then you realise that you don’t know where you’re getting off because no-one knows that you’re coming.”

He said his wife was panicking and his children, aged two and three, became “hysterical”.

The family were forced to remain on the train until it reached Shoeburyness, at the eastern end of the line beyond Southend, where his wife Alana went to speak to the driver.

‘Scared to go back on a train’

Mr Hamilton, who has been in a wheelchair since contracting meningitis and sepsis in 2019, said they were then told their attempts to hold the door open at Benfleet had caused a delay.

This meant the train which would have taken them back had already left and it was several hours before the family got home.

He said the experience had made him “feel really small”.

“You’re fighting for your independence when you’ve had such a big disability hit you, and then you can’t even get on and off a train without help,” he said.

“It makes you scared of going back on the train again.”

Once they got to Benfleet railway station, the couple said they were told there had been a problem with children running around the track, but that they were told different versions of events by other staff.

A c2c spokesperson said: “We apologise for any inconvenience that was caused to Mr Hamilton.

“We can confirm there was an incident at Benfleet station when Mr Hamilton arrived, which was being dealt with by two police officers.

“Unfortunately, due to this disruption, station staff were unable to assist Mr Hamilton disembarking from the train and we sincerely apologise for any upset and disruption this caused him.”

The company said it had provided “additional briefings” to the staff involved to ensure an incident such as this “doesn’t happen again” and that they were arranging a meeting with Mr Hamilton.

Mr Hamilton said he would like to see ramps fitted to train carriage exits.

C2c said its trains did not have automatic ramps but it would be replacing and adding new ramps at its stations in the next two months.

List Of DWP Claimants Owed £2.6bn Due To Benefits Mistakes

June 9, 2022

The DWP have underpaid benefits claimants – including people on Universal Credit, Housing Benefit, and those receiving state pension – a staggering £2.6 billion.

Recent figures published by the Department for Work and Pensions show it underpaid 1.2 per cent of benefits in the year to April 2022. While some claimants got too little in benefits, some had the opposite issue. DWP also overpaid benefits by £8.6billion in the period – the highest rate ever.

Underpayments and overpayments happen due to mistakes by DWP, councils, HMRC, fraud, and claimants making errors. DWP underpaid £410million in Universal Credit in the period but overpaid £5.9billion.

It underpaid state pensioners £540million but also overpaid £110million. Housing Benefit was overpaid by £950million but underpaid by £210million.

Pension Credit was overpaid by £350million but there were £100million of underpayments too. Normally, DWP will spot the problem and pay you what you are owed as a lump sum.

But if you think you have been underpaid and the DWP has not contacted you or corrected the issue, you can contact them to enquire. For example, Universal Credit claimants can call a helpline on 0800 328 5644 or use their online account.

If you think you have not had the correct state pension amount, you should contact the Pensions Service arm of the DWP directly. You can call on 0800 731 0469, but be aware that the lines are only open from 9.30am to 3.30pm Monday to Friday.

If you have been overpaid benefits, the DWP can recover any extra from you. If the DWP has paid you too much Universal Credit, it will take back the money from your future payments.

 

‘It Is All About Raising The Profile Of Carers’

June 9, 2022

It was early evening, and Rebekah Zammett was about to leave her north Oxfordshire home to work a nightshift looking after teenagers at a local residential institution.

But then a thud came from the bedroom of her son Jack, who has cerebral palsy.

The then eight-year-old was having a seizure – one of dozens he experienced every day. Critical questions ran through her mind as his convulsions ebbed and flowed.

“Has it really ended? Is this one for the ambulance? Do we need to administer emergency medication,” remembers Rebekah.

“No-one knows his medical history and the intricacies of his needs like I do. Not even my husband.”

As the anxious minutes ticked by, Rebekah was acutely aware that people at her workplace – both staff and teenagers – were relying on her to turn up for her shift.

“I just felt really torn,” she says. “The staff caring for the children at the home wouldn’t be able to clock-off until I got there. And they would have done at least 12 hours with kids who had very high-level, complex needs.

“But if I did go to work, how on earth could I concentrate on that?”

Thankfully, Jack’s seizure didn’t require hospitalisation, and after waiting an hour to satisfy herself that he was stable, Rebekah went to work.

But there’s been no let up in the pressure: Jack, now 13, needs help to eat, dress and go to the toilet, and must attend many regular hospital appointments.

This year’s Carers Week, which is currently running across the UK until Sunday, 12 June, aims to throw a spotlight on the pressures facing the estimated 10.5 million people who are now supporting an elderly, disabled, or seriously ill relative or other loved one.

Charity Carers UK, one of the main organisers of the annual event, says that this 10.5 million figure equates to one adult in five having such unpaid caring duties.

For many, like Rebekah, it can be very tricky to balance this work with their paid, day job.

Her breaking point came when a previous employer wanted her to work extra hours to make up for the time she had taken off to care for Jack as he recovered from major surgery.

“I just couldn’t go back in there knowing what they thought of me… that I’ve taken liberties. I felt completely broken.” She quit the next day.

An increasing number of carers are making the tough decision to leave the workforce.

Carers UK says that just before the pandemic hit, 600 people a day were quitting work to look after a loved one. That figure is thought to be even higher now.

However, falling off the work-carer tightrope can have devastating financial consequences, especially in light of the current cost of living crisis.

That’s been the experience of Kim Harry-Young from Newport, Wales, who had to stop working as a nightclub DJ three years ago to care for both her autistic 16-year-old son Logan, and her wife Michelle, who suffers from epilepsy.

“Financially it’s a problem,” says Kim. “You have to cut your spending.”

She is relying on benefits to survive. But it’s not just the money she’s missing.

“I miss [performing] in front of people, being with people. But it’s impossible to go back to work. You do feel alone sometimes, because it’s just you doing it.”

To compound matters further, Kim developed breast cancer since quitting work – but is now in remission.

“We’re lucky,” she says. “Family and friend support is everything. Without them, I don’t know what we’d do.”

Carers UK says that around 2.2 million carers are now worried about being able to cope financially, and the Joseph Rowntree Foundation reports a quarter of carers have slipped into poverty.

But it’s not just the carers who suffer if they’re not part of the workforce. The wider economy takes a hit as well.

An academic study in 2018 estimated that the annual cost of carers leaving the workforce was about £2.9bn in benefit payments and lost tax revenues.

Furthermore, the UK is in the grip of a recruitment crisis. There are now more job vacancies than there are unemployed people to fill them. Disruption in the travel industry, hospitality sector and healthcare are all blamed on chronic staff shortages.

The economy can ill-afford to have more people leave the workforce.

The UK government and campaigners agree that flexible working and time off to deal with emergencies, are key to making workplaces more carer-friendly. But plans to improve those rights failed to make it into the legislative programme announced in May.

Some companies have already taken matters into their own hands.

Big firms like Natwest and British Gas are part of the Employers for Carers network, which currently comprises 245 member organisations from the public, private and voluntary sectors. Together they aim to boost carer-friendly employment policies.

Insurance giant, Aviva, is part of the network. Its 22,000 staff can take up to 35 hours per year paid leave to deal with planned caring events and 35 hours for emergencies. The company also actively encourages flexible working to fit in around caring duties.

Danielle Harmer, the company’s chief people officer, believes most big companies should be able to introduce similar policies.

“I don’t think you do it just because it makes commercial sense,” she says. “But of course it makes commercial sense to keep your talented people, and enable them to work out [the balance between] caring and work.

“If someone leaves, you have to replace them, maybe using a search firm and there are costs associated with that.” She also estimates it can take up to six months for replacements to get fully up to speed.

“The retention of talent is a strong business case for what is actually doing the right thing,”

Meanwhile, Rebekah Zammett continues to care for her son Jack, and is balancing that with studying for an Open University degree from home.

She’s adamant that the UK must place more value on its army of carers and the contribution they make.

“At the moment you’re seen as low-skilled, and not a particularly desirable person to have around, ” she says.

She wants carers to be protected by equality legislation, and is urging the introduction of a new government payment for carers taking time off to deal with emergencies.

“It’s about raising the profile of carers and saying ‘these people are really valuable to our workforce, they are committed and do care about their jobs’. Investing in [them] is investing in future generations.”

A UK government Department of Health and Social Care spokesperson said: “Carers play a vital role in our communities and we recognise their hard work and the huge contribution they make.

“We are investing up to £25m to work with the sector to kick start a change in the services provided to support unpaid carers – which could include respite and breaks, peer group and wellbeing support, and new ways to combine these to maximise their impact.”

Manchester Arena Bomb Survivor Martin Hibbert Starts Kilimanjaro Challenge

June 9, 2022

A man seriously injured in the Manchester Arena bombing has started his charity climb up Mount Kilimanjaro.

Martin Hibbert from Chorley, Lancashire, was one of the closest people to the bomb to survive the 2017 blast but was left paralysed from the waist down.

He is using a specially-adapted wheelchair and is raising funds for the Spinal Injury Association.

Mr Hibbert said he was “ready to smash it”.

Speaking to BBC Breakfast as he was about to start climbing Africa’s highest mountain, he said: “I’ve always wondered why we survived being so close [to the blast].

“It occurred to me when I saw Kilimanjaro up close; it’s for this moment.

“This is the reason why I survived; to change perception of disability, to actually show if we embrace or celebrate disability look at what we can do.

“We can literally climb mountains.”

He added: “I’m ready to smash it now.”

Mr Hibbert has been preparing for the climb for more than two years, including altitude training and preparing for freezing conditions.

He is joined on the climb by two of the nurses who cared for him.

The trek comes after the city marked five years since the atrocity, on 22 May 2017, at the end of an Ariana Grande concert, which killed 22 people and injured hundreds more.

Among events to remember those who died, the Duke and Duchess of Cambridge officially opened a memorial for the victims.

Mother Told Deaf Son Had Normal Hearing

June 8, 2022

Carrie-Ann Farquhar was told that her son Jamie was deaf at birth – so it was a huge relief when he passed a hearing test eight months later.

The 39-year-old was told that Jamie had “normal hearing” after the assessment at the NHS Lothian paediatric audiology department in Edinburgh.

Carrie-Ann and and her son went straight to her favourite restaurant to celebrate with Jamie’s father, Gary Farquhar.

The mother-of-two from West Lothian said: “I thought brilliant, that he was ok. It was such a huge relief after worrying for eight months.”

But as time went on she began to worry that something wasn’t right, and before Jamie turned four years old he had been diagnosed as being profoundly deaf.

Carrie-Ann has come forward to tell her son’s story after it emerged that more than a dozen families are seeking compensation following “significant failures” at NHS Lothian’s hearing service for children.

The health board apologised to more than 155 families in December after an independent investigation found serious problems diagnosing and treating hearing loss.

Deaf support group, Flaag, said Jamie’s experience showed more children had been affected by the “significant failures” than had been highlighted in the report.

NHS Lothian said Jamie’s hearing loss could have been diagnosed earlier but that his condition was now being “appropriately managed”.

Carrie-Ann, a primary school teacher from West Calder, told BBC Scotland about the hearing test which Jamie passed at eight months of age.

She said there had been two large boxes – as “tall as a fridge” – opposite her son.

“They were about two metres apart and the idea was to watch if he turned towards the box which was making a noise,” she said.

“The trouble, I noticed, was the picture also lit up so he was turning his head at that instead of the noise – but they still passed him.”

‘He wouldn’t flinch’

The family initially felt great relief – but by the time Jamie reached the age of one, Carrie-Ann thought he should be “responding a bit better”.

She did not take him back to the hospital straight away so that he would have more time to develop.

But she began to feel suspicious that something was not right during a farm outing when she became separated from him, and Jamie could not hear his mother shouting at the top of her voice.

“Then we noticed even if he was standing right next to his step-dad, who plays the snare drum, he wouldn’t flinch,” she said.

So she took Jamie back to the doctor and he was referred to a speech and language therapist.

Carrie-Ann said the therapist had suggested that Jamie might be autistic, or that she might be a neurotic first-time mum.

“I was very upset and angry, and because I was so emotionally charged I didn’t voice at the time that he was lip-reading,” she said.

“I knew he was an intelligent, curious boy.”

She was “unhappy” with the therapist’s diagnosis, so went to her GP again and Jamie was referred back to audiology.

For the next test, he had to put an object in a box when he heard a noise.

“They gave instructions only with words, so because he couldn’t hear he didn’t know what to do,” Carrie-Ann said.

“The audiologist said he’s bored, has a lack of concentration and he’s not listening to the instructions.

“I was frustrated because I know he’s eager to please so this didn’t ring true with me, I knew it was more a case that he didn’t understand the spoken instructions.”

Carrie-Ann said she was ready to accept she might be wrong when Jamie’s step-dad, Callum Firth, queried the test and they “reluctantly” tested him again.

She said: “The woman then physically held her hands up and said she didn’t know what was wrong with him.”

At a further appointment Jamie was diagnosed as severely deaf. He also had glue ear – when the middle part of the ear canal fills up with fluid – which gave him even more hearing loss.

He was fitted with hearing aids just as he started nursery, aged three-and-a-half.

Carrie-Ann said Jamie only had a vocabulary of 20 words at the age of four, when he should have been speaking full sentences. Three-year-olds are expected to have a vocabulary of more than 1,000 words.

She said she deferred his entry to school for a year because he had to play catch-up.

“It is lucky I am a primary teacher because I was able to support him, as otherwise he might have struggled more,” she said.

Mike Henderson, co-founder of deaf support group Flaag, said he feared there were many more children who had experiences like Jamie’s but who were not part of the report which was published in December 2021.

“We want to increase the awareness of this catastrophic failing because we know there have been more than 155 children affected,” he said.

The independent investigation by the British Academy of Audiology (BAA) found “significant failures” over nine years at NHS Lothian.

The report said there was “no evidence” national guidelines and protocols on hearing tests for children had been followed or consistently applied “at any point since 2009”.

It said NHS Lothian staff were deviating from professional standards and that several profoundly deaf children were diagnosed too late for vital implant surgery.

The report highlighted that the average age of diagnosis of hearing loss at NHS Lothian was 4.5 years, compared with an average of 109 days in England.

Working through cases

Dr Tracey Gillies, NHS Lothian’s medical director, repeated the board’s “sincere apology” and said lessons had been learned.

“Unfortunately, in Jamie’s particular case there was a delay in the detection of his condition,” she said.

“Jamie is not completely deaf but had a mixed pattern of deafness with both congestion and an underlying sensorineural hearing loss which could have been diagnosed earlier.”

Dr Gillies said Jamie was now being “appropriately managed” and remained under long-term review.

“As part of its findings, the audit recommended we needed to work with our teams to change and improve the way they interact with families and children during assessments,” she added.

“We will review all children where the audit and reviews by BAA have raised concerns and will share any identified assessments that were not carried out to the required standard.

“We are working through these cases in order of priority and will also continue to work with other patients at their regular appointments.”

Chelmsford Woman Declined Guide Dog Due To Local Paths

June 8, 2022

A blind woman has been told she could not have a guide dog because the pavements nearby were unsuitable.

Janice Parker, from near Chelmsford, Essex, was registered blind in November 2020 and referred to a guide dog charity by her GP.

The 68-year-old said, however, the charity found her illegible for a guide dog because of the damaged and blocked pavements near where she lives.

Essex County Council has apologised and said it was investigating the issue.

Mrs Parker said she was “disappointed” the charity could not recommend a guide dog for her.

She said her “freedom and independence” were at stake due to the paths which she said were reduced by the overgrowth and were in a poor state of repair.

Chris Theobald, from Guide Dogs UK, said although the charity could not comment on Mrs Parker’s case specifically, “blocked and damaged pavements are sadly all too common a problem for people with sight loss around the country”.

“Guide dogs need space to work, and very narrow pavements combined with obstacles such as masts or other street clutter can force guide dogs and their owner out into road repeatedly, potentially causing a real risk to their safety,” he said.

He said in cases where the charity was unable to offer a guide dog partnership, it would try to find other solutions.

Essex Highways has apologised for the inconvenience caused to Mrs Parker and said the area was recently inspected.

It said it was looking into whether the vegetation fell under its jurisdiction or was on privately owned land.

“If the land is owned by us we will prioritise the matter accordingly, however, if the vegetation is from privately owned land it will be the landowner’s responsibility to cut it back,” it said.

Love Island: Tasha Ghouri Becomes Show’s First Deaf Contestant

June 7, 2022

A 23-year-old model and dancer has become the first deaf contestant on the ITV2 dating show Love Island.

Tasha Ghouri, from Thirsk, North Yorkshire, gathered the contestants to reveal she had been completely deaf from birth and she wore a cochlear implant in her right ear.

Calling it her “superpower”, Ms Ghouri told them: “It’s just something cool that I’ve got about myself.”

She added: “It doesn’t define me, it’s just a part of who I am.”

On the first episode of the new series, fellow Love Island contestants praised Ms Ghouri for her openness.

Indiyah Polack said: “She was so open about it and I could see in her face that was a big thing for her.

“I just honestly wanted to give her a big hug because I just wanted her to know she’s not alone and we’re all here to support her no matter what she’s going through and we all love her.”

Contestant Luca Bish, a fishmonger from Brighton, said: “Literally, I would not have had a clue, and to say it in front of a bunch of people who you’ve never kind of even met or know…credit to her.”

Hannah Tweddle, a dance teacher who taught Ms Ghouri for about 10 years, said: “She is an amazing person with a wicked sense of humour. She is very kind, very genuine. She is fabulous.”

Of Ms Ghouri’s dancing, she said: “When she was younger, we didn’t really make too many changes for her.

“She could hear enough and with very bassy music she picked up the rhythm and the sound really easily. She was good.”

Last year, actress Rose Ayling-Ellis became the first deaf contestant to win BBC One’s Strictly Come Dancing.

The Eastenders star stole the show with her dance partner Giovanni Pernice and was widely praised for raising awareness of the deaf community.

Gatwick Airport Apologises To Disabled Passenger Left On Plane

June 7, 2022

We are starting to think these cases should get a website all of their own! Three in 2 weeks. Listen up airports!

Gatwick Airport has apologised to a disabled passenger who was left on a plane for more than an hour and a half after it had landed.

Victoria Brignell, who is quadriplegic, said she was initially told it would take 50 minutes to help her from the aircraft.

Her treatment has drawn criticism from former Paralympian Baroness Tanni Grey-Thompson.

Gatwick Airport described Ms Brignell’s treatment as “unacceptable”.

Ms Brignell said: “I booked the help three months in advance, it wasn’t as if I just turned up, they knew I was coming, and I reminded them two weeks ago, and still I didn’t get the service that I should expect to have.”

Her friend Sonia Sodha tweeted a picture of Ms Brignell on the plane.

Ms Brignell said: “I can’t use my arms or legs. To get off a plane I need two people to lift me from the airplane seat into an aisle chair, which is a specially-designed narrow wheelchair to push me along the aisle off the plane, and lift me into my wheelchair waiting outside.

“My wheelchair arrived promptly, but the people who were supposed to help me get off the plane didn’t turn up – they were busy elsewhere.”

She said British Airways staff were “fantastic”, very apologetic and brought drinks while she waited for Gatwick Airport staff to arrive.

‘So many horror stories’

But she said she was left unable to use the toilet and her carers could not go off duty, because of the delay.

Other passengers hoping to board the plane for a different flight were also delayed.

Ms Brignell said: “I have been very nervous about travelling by plane because I had heard so many horror stories about people’s chairs going missing.”

She said this was her second time flying abroad and the fourth flight she had taken.

Ms Brignell said British Airways staff got her off the plane and she received an apology form Gatwick via Twitter, but she plans to submit an official complaint.

She said: “I just feel in 2022 people shouldn’t be stuck on a plane for that long.

“UK airports need to get their act together and plan their staffing appropriately.”

Baroness Grey-Thompson said she took direct action when she suffered a recent similar experience.

She said: “I was flying to Berlin, the plane was two and a half hours late, but after waiting just over half an hour on board they couldn’t give me any clear indication of when the assistance was going to come.

“My chair was at the gate, so I decided to get on the floor and pull myself off the plane.”

BBC security correspondent Frank Gardner, who uses a wheelchair, said such situations were becoming “depressingly familiar”.

“The airports seem to be slipping back. The level of investment and effort that goes into making money at these airports isn’t matched by the effort and money that needs to go into getting disabled passengers off the plane at the same time as everybody else.”

Gatwick said it would launch an investigation into why Ms Brignell was left on the plane for so long.

A spokesman for the airport said: “The treatment received at Gatwick Airport was unacceptable and I would like to offer our sincere apologies to Victoria.

“This incident has been escalated and Gatwick and Wilson James, our assistance provider, are investigating how this happened as a matter of urgency.”

A spokesman for Wilson James said: “We are deeply disappointed to have delivered a poor service on this occasion.

“While the aviation sector in particular is struggling with well-documented pressures, Ms Brignell’s experience is unacceptable and falls far below our values and aims.”

Muckamore Abbey Hospital: Bad Practices ‘Allowed To Persist’

June 7, 2022

Bad practices were allowed to persist at Muckamore Abbey Hospital, the chairman of a public inquiry into allegations of abuse has said.

Tom Kark QC said that was to the detriment of patients who were, without exception, highly vulnerable.

He was delivering his opening statement to the inquiry which began public hearings in Belfast on Monday.

The families of those affected lined up outside the inquiry building holding pictures of their loved ones.

Inside, the inquiry chair, who had a key role in the inquiry into avoidable deaths at Stafford Hospital, said it was the job of those in authority to keep people safe.

“What happened at Muckamore Abbey hospital has been referred to as a scandal and without predetermining any issue it is quite obvious that bad practices were allowed to persist at the hospital to the terrible detriment of a number of patients,” Mr Kark said.

“Those patients themselves were all, without exception, highly vulnerable in different ways and so it is understandable that there is considerable public anger at some of what has already been revealed.

“Relatives and carers who entrusted their loved ones to the hospital to be cared for with compassion have discovered that in many cases that’s not what was happening.

“Because so many of the patients were either non-verbal or had difficulty communicating they couldn’t express what was happening or they were not regarded as credible.”

Allegations of abuse

Muckamore Abbey Hospital is also at the centre of the UK’s biggest-ever police investigation into the abuse of vulnerable adults.

Some staff working at the County Antrim hospital are alleged to have carried out physical and mental abuse as well as “wilful neglect” of vulnerable patients.

Detectives have viewed about 300,000 hours of CCTV footage from inside the hospital.

Police have arrested 34 people; so far eight people have been charged, and more than 70 staff have been suspended as a precaution.

Patients ‘at front and centre of inquiry’

Mr Kark told the public inquiry that many of the parents and relatives and carers who had trusted the hospital had been “let down”.

He added: “Today is the culmination, in some respects, but in others it’s just the start of a massive effort by those closely affected by and involved with Muckamore Abbey Hospital to have an inquiry which will scrutinise what was happening at the hospital, over many decades.

“I regard the patients and their relatives and carers, who have been abused or received poor care, as being at the front and centre of this inquiry.

“Getting to the bottom of what’s been happening at Muckamore would be quite impossible without hearing about the experiences of patients, either directly from those patients or from their loved ones.”

He said the central purpose of such an inquiry was to find out what happened and how it was allowed to occur.

“The essence of our function is to explore the evidence and to construct sensible recommendations which will ensure that patients are well treated and cared for at Muckamore and at similar institutions in Northern Ireland.”

‘We will uncover what has gone wrong’

The inquiry was told that clearly some of the families “felt furious and others felt guilty”.

“This public inquiry requires cool and calm reflection. I will do whatever I can to ensure this is a safe space for all who give evidence and who attend”, Mr Kark said.

Speaking to the BBC after his opening remarks, Mr Kark said the inquiry was important for the wider health service as well as those directly affected.

“I’m very lucky that I’ve got two experts with me who really understand about the delivery of care to patients of this nature and so I have no doubt at all that we will turn over the stones and we will uncover what has gone wrong here.”

He added: “There’s absolutely nothing to stop us naming and shaming if we feel that’s appropriate and, yes, people will be held to account when we write the final report.”

The inquiry also heard how Mr Kark visited the mother of a patient who had been a resident in Muckamore before she died in order to gather evidence.

Philomena Lyons died on 10 February.

Her son, Richard, had been admitted to the hospital in 1992 and passed away in 2018. He died on his 46th birthday.

Mrs Lyons had put her memories in writing as she said “she wanted to leave a lasting record for her son”.

Sean Doran QC, counsel to the inquiry, said it was important “to remember all those who had died and could not be part of this significant inquiry”.

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Analysis: Marie-Louise Connolly, health correspondent

It is critical that those with a learning disability have their voices heard – and it shouldn’t take a public inquiry to hear what they have to say.

The Muckamore Abbey Hospital crisis makes for uncomfortable reading.

For decades this institution has been home to hundreds of men and women.

It was a place which was supposed to care and protect vulnerable adults, but for some it meant abuse and cruelty.

Families have told me that they didn’t want their loved ones to call Muckamore home, but for so long there wasn’t anywhere suitable for them in the community.

Recently a man who had lived there for 47 years – since the age of nine – was rehoused in an ordinary house.

There is a great deal of expectation about Northern Ireland’s latest inquiry into its health and social care system.

Families want and deserve answers.

How was this allowed to happen? Who knew it was happening? And who allowed it to continue?

This inquiry is not just about Muckamore.

Instead it is about the system and those in charge of it.

There are many pertinent questions around who was in charge; the accountability and the role played by various boards.

In February 2019, then-chief executive of the Belfast Trust, Martin Dillon, told the BBC that some of what had happened was “a source of shame”.

He said his primary focus was to “put things right”.

This public inquiry will hopefully yield answers and help Northern Ireland turn a corner in how it protects those who rely on us to protect them.

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Glynn Brown went public about his own son’s experience in 2017.

Speaking to BBC News NI he said: “This is the worst adult safeguarding scandal since the NHS was formed.

“I shouldn’t have had to push and prod and keep raising for this inquiry to be opened but I did.

“Once they realised this was a massive scandal with vulnerable people they just should have launched a public inquiry.

“There have been catastrophic failures in all directions and in all departments. It goes to the very top.

“We want to know how come every protection measure that was in place failed so miserably.”

In December 2018, a catalogue of abuse and neglect in the hospital was revealed in a report leaked to BBC News NI.

The review, A Way To Go, was commissioned by the Belfast Trust to examine safeguarding at the hospital between 2012 and 2017.

Among its findings were that patients’ lives had been compromised, staff did not follow safeguarding protocols and that CCTV footage showed patients being harmed by staff.

The inquiry will establish what happened between residents and some members of staff, to examine management’s role and ensure that such abuse does not happen again at the hospital or any other institution.

The inquiry is to be wholly independent and not accountable to the Department of Health, the Stormont Executive, the Northern Ireland Assembly or any public body.

Manchester Airport: Wheelchair User Left On Plane Calls For Review

June 6, 2022

A wheelchair user who was stuck on a plane for two hours because there was no-one to help him disembark has called for support services to be properly funded and not be “an afterthought”.

Daryl Tavernor said he was trapped after arriving at Manchester Airport from Rome at 02:30 BST on 26 May.

He said once off, he had to call police to get past immigration, as the border desks were unmanned for over an hour.

The 33-year-old, from Stoke-on-Trent, said it had been “really concerning”.

Mr Tavernor, who has spinal muscular atrophy, said he had expected to wait about 15 minutes to disembark from the flight, which had been delayed by three hours.

However, he said he and his carer were stuck as the plane’s “visibly annoyed” captain tried to find the special assistance staff and when someone finally arrived at about 04:30 BST, they gave no reason for the delay.

After leaving the plane, he then had to wait a further hour at the immigration desk, as there were no border agents on duty.

‘Done on a budget’

He said the passenger assistance worker’s calls to Border Force officials were “not going through” so he told him: “I’m going to have to call the police because we are trapped”.

“I felt extremely tired, frustrated and I had run out of ideas,” he said.

“There was absolutely no other option but to call the police.”

He said Greater Manchester Police called Border Force and within 10 minutes, five agents arrived, who said they had been “contacted by GMP, not the airport”.

The Home Office however said agents were alerted by the airport.

A spokeswoman said: “Border Force were only alerted to the late disembarkation of passengers at 05:15 by Manchester Airport, but took immediate action to expedite them through control.”

Mr Tavernor said it was “really concerning that the airport management has no communication with Border Force, especially in situations like this”.

“God forbid there was an incident [as] the lack of communication between welfare and security is very concerning”, he said.

He added that it was the second time he had faced such issues at Manchester Airport, but it was a national issue.

Similar issues have been reported at other airports, including by the BBC’s security editor Frank Gardner, who was left on a plane at Heathrow Airport.

Mr Tavernor said assistance was being “done on a budget” and “often under-resourced and undertrained”.

“What I want to see happen is a valued special assistance service and not just an afterthought,” he said.

“I’d like to see a minimum standard such as a time period of boarding, minimum training for operators, and better equipment.”

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How do you book (and complain) about airport assistance?

  • The UK government recommends passengers request assistance through their airline, tour operator or travel agent at least 48 hours before travel
  • If a passenger has not pre-notified, assistance will always still be provided but you might have to wait longer to be helped
  • If things go wrong and you’re unhappy, the Civil Aviation Authority recommends you take your complaint directly to the airline or airport
  • If you remain dissatisfied, you can refer your complaint to an alternative dispute resolution body which provides alternative methods, such as mediation and conciliation, instead of going to court

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A Manchester Airport spokesman said he was “sorry to hear that Mr Tavernor had a disappointing experience” and was working with the assistance provider ABM to “understand how a repeat of this might be avoided”.

He said the airport, along with “airlines, baggage handlers and assistance providers”, were experiencing staff shortages “due to the rapid pace at which travel has recovered from the pandemic”, adding: “We are working tirelessly to address this as quickly as possible.”

An ABM spokeswoman said the company was examining Mr Tavernor’s experience and regretted any time when its service did not meet ABM’s standards.

“We are experiencing higher volumes of passengers who require special assistance than our busiest pre-pandemic peak [and] understand the inconvenience and emotional impact this all may have”, she added.

A Ryanair spokeswoman said the company’s crew “remained with this passenger and his carer at all times” while they waited for over two hours for assistance.

The Home Office has also been contacted for comment.

Tanzila Khan: Disability Rights Campaigner Tells Young Women ‘The World Is Yours’

June 1, 2022

Tanzila Khan does not like people feeling too sorry for themselves – or for her.

“I don’t like sob stories or tragedies,” said Khan, who is a disability and women’s rights campaigner in Pakistan. “I’m not saying they don’t exist – we can all face adversity – but I think we need a more positive approach to solving problems. I wanted to present people with disabilities in a more positive way.

“When I looked at the world, I didn’t see a space for myself. Not in TV series, not when I read a book … there was nobody who represented people with disabilities. I decided, ‘I’m going to create that space.’”

Khan, 31, wrote a short comedy film, Fruit Chaat, addressing some of the challenges she faced growing up in Pakistan as a wheelchair-user. It touches on four aspects of life for a young woman with disabilities: education, employment, entrepreneurship and love.

Inspired by her own experiences, Khan said the film is relevant to many women.

Fruit Chaat, an award-winning short film written and produced by Tanzila Khan. Photograph: Moiz Abbas Films

“As soon as you start moving around the world, you face challenges. It’s difficult to find a school or a university that is wheelchair-friendly and has an elevator, so I had to pick the institution first, then my degree. Being yourself, out in the world, is the greatest accomplishment,” she said.

Khan believes her messages resonate with a wider audience when humour is added. “Tragedy and comedy always go hand in hand – and I choose to find comedy in every tragedy.”

Khan’s advocacy work around menstrual health demands a different tone: anger.

In Pakistan, Khan launched Girlythings.pk, delivering menstrual, reproductive health and maternity products to women anonymously.

“When we talk about Pakistan, it’s one country but there is a lot of diversity,” Khan said. “There are a lot of women who are empowered and have agency – but in the same country, you can find women who have never left the house or gone to school, so there are challenges across those diversities. For many women who work and go to the office, companies don’t have access to menstrual care, so what does she have to do? She has to quit the meeting,” she said. “It creates a barrier.”

Girlythings, she added, redresses imbalance. The reaction to these topics has, Khan said, been “extremely welcoming”, with significant support from Pakistani men. “It made me think: ‘Why haven’t we talked about this earlier?’ I’m only one person and I want to reach every corner, but this response makes me feel hopeful that our society is becoming very progressive.”

Last week, Khan was in the UK, picking up her Amal Clooney Women’s Empowerment award as part of the Prince’s Trust International awards ceremony. It has given her, she said, even more motivation to continue with her advocacy work.

And her message to other young women? “The world is yours. Whatever you want to do, just do it. Be bold. Step up and own it.”

UK Sperm Donor With Genetic Condition Banned From Contacting Children

May 31, 2022

A man with an incurable genetic condition who advertised his sperm to lesbians on social media has been banned from contacting some of the children he fathered as a result.

A family court judge took the unusual step of naming James MacDougall after finding he “took advantage of these young women’s vulnerability and their strong desire to have children”.

Mrs Justice Lieven said there was “a very specific benefit in him being named in the hope that women will look him up on the internet and see this judgment”.

MacDougall, 37, has fragile-X syndrome, a genetic condition that causes a range of developmental problems including learning difficulties and cognitive impairment. The judge described him as “a complex person” who has been diagnosed as having learning difficulties and being on the autistic spectrum.

The family court heard he placed an advert as a potential sperm donor on a social media page for lesbian women seeking donors. He claims to have ended up fathering 15 children as a result, all aged between nearly four and a few months old – some of whom he was applying to the court for parental responsibility for, or contact with.

Three of the mothers are vehemently opposed to MacDougall having anything to do with four children he had fathered. All were in their early 20s and in lesbian relationships when they got pregnant; one has learning difficulties and “came across as being extremely vulnerable” in court, the judge said.

Doctors have shown significant concerns about the development of one of the children, who is still not verbal aged three and is “behaviourally challenging”. Sheffield children’s services department is investigating allegations that MacDougall caused bruises to another of the children, the court heard.

Lieven found that MacDougall showed “fundamental irresponsibility” by not being upfront about his condition, which prevented him from being a sperm donor through a regulated clinic.

It was mentioned in at least two of the legal agreements signed by the mothers but without any explanation of the consequences of fragile-X. But the agreement was a “closely spaced three-page document in highly legalistic language which is difficult to read even for a lawyer”, the judge said.

One of the mothers said she had difficulty reading and did not get as far as page three of the agreement, where the condition was listed. Another mother said she did read more of the document but either did not see or did not appreciate the significance of the reference to fragile-X.

“Although the agreement does refer to fragile-X, [MacDougall] took no steps to explain the condition to [the women] and no steps to ensure they understood. [He] took advantage of these young women’s vulnerability and their strong desire to have children.

“This failure to take responsibility for his own condition and to have any apparent concern for the long-term impact both on the mothers and potentially the children, is a factor in concluding that [he] should not be given parental responsibility for the children,” the judge ruled.

Lieven said the women were irresponsible to use MacDougall as a sperm donor without making proper inquiries about his health record, but were desperate for children.

She refused MacDougall’s application for parental responsibility and contact with the children, and authorised him to be named, saying: “I have no confidence that he will not act as a sperm donor in the future.

“I equally have no confidence in him fully explaining to any woman the true implications of his fragile-X syndrome. There is therefore a very specific benefit in him being named in the hope that women will look him up on the internet and see this judgment.”

GCSE Grades For Critically Ill Candidates

May 31, 2022
My daughter was diagnosed with Acute Myeloid Leukaemia on the 11th of March 2022. She had completed the majority of the GCSE syllabus for her chosen subjects. She started chemotherapy on the 14th of March and also spent 16 days in intensive care. She has completed 2 rounds out of 4 rounds of chemotherapy and has only spent 6 nights at home since her diagnosis.My daughter has sat two full sets of mock exams under exam conditions and had 100% attendance before her diagnosis and she works hard and diligently at school. Despite all her hard work and effort, she has been told by the exam boards that if she is too poorly to sit her exams, she will not get any grades. They will NOT consider teacher assessed grades at all. We ask that the exam boards take into account individual circumstances and award fair teacher assessed grades as they did throughout covid. We are not asking them to do anything which has not been tried & tested.Our daughter & other teenagers in similar situations should not be penalised for having cancer. 
 
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Guide Dog And Owner Turned Away From Oxford Restaurant

May 31, 2022

A blind student was left feeling “shaken and excluded” after a restaurant said it would not allow them and their guide dog to eat inside.

Kelsey Trevett, 20, visited Ramen Kulture in Oxford with their guide dog Lacey and a friend on Wednesday.

They said a member of staff refused to let them inside, despite acknowledging they were legally obliged to.

The restaurant has apologised and said it has taken action to ensure it does not happen again.

Under the Equality Act in England, Scotland and Wales, guide dogs and other assistance dog owners are legally allowed to enter most services, premises and vehicles.

Kelsey, a student at Trinity College, Oxford, said incidents like it had been “frustrating” and “incredibly distressing in the moment”.

In a tweet, they wrote: “To be unaware of the law is one thing: whilst awareness should be better, progress takes time.

“But to have the manager acknowledge the law, and still argue that he wasn’t prepared to follow it, just added an extra layer to this discriminatory behaviour.”

In a statement posted on Instagram, Ramen Kulture thanked Kelsey for informing them of their legal obligations.

“We now have had a meeting with all staff in regards to the rules and guidelines information of access to food premises with guide dogs owners and we have established the information provided from the publication,” they said.

Radio 1’s Adele Roberts On Living With Her Stoma Audrey

May 30, 2022

Last October, the Radio 1 DJ Adele Roberts announced she’d been diagnosed with bowel cancer. She’s been through intense treatment, and now wears a stoma bag as her bowel recovers.

This month, Adele and her stoma – which she’s named Audrey – are on the front cover of Women’s Health magazine, as she continues to break down the stigma surrounding her diagnosis.

BBC Breakfast followed Adele and her partner Kate, you can watch their story here.

Teenage Blind Opera Singer Has No Barriers

May 30, 2022

A blind singer who started performing opera on Zoom has said he wants to show there are no barriers to success as he prepares for his first performance.

Toben Durrant, 16, from Cowbridge, Vale of Glamorgan, has always loved music and played instruments as a child.

He said his love of opera comes from the emotional effect it has on people, and he was inspired by singers like Andrea Bocelli, who is also blind.

His advice to anybody who has a disability is: ‘You can do anything.”

Toben has a rare genetic condition called Leber’s congenital amaurosis.

He joined the Welsh National Youth Opera (WNYO) during the pandemic in September 2020.

He rehearsed on Zoom until his first performance – in front of the Queen at the opening of the Senedd in October.

Reading music through braille and learning orally, he is currently in rehearsals for The Black Spider, which opens at the end of May at the Wales Millennium Centre.

Toben has always been a musician, playing the violin and viola growing up before turning his hand to singing as part of his musical exams.

“I had my accompanist helping me and he went ‘ah you can sing’ and said I should start singing lessons.

“So I did and that’s how I started.”

He developed a love for opera after performing pieces for his exams and being moved by the influence he said it can have on people.

“I loved the sort of the theatrics and the way it’s not really realistic.

“You’re never going to have an opera that’s like a down to earth kind of like what you would like in perhaps normal theatre.

“That’s what I love about it, it’s so weird and also just expressing yourself and it’s lovely to do that.”

At the WNYO he said he received lots of support to help “expand horizons”.

“They have been absolutely amazing with whatever they do,” he said.

“They include me in everything, my blindness hasn’t been an issue.”

To support Toben, textured markings were placed on the floor, buddies provided prompts and specialised set design were introduced.

As well as that, he is given music in braille but said he mainly learns by listening to others sing.

He said: “I thought there would be quite a few barriers because it’s a pain and I’m still slow at reading music braille but I’m getting quicker.”

He hopes when others see him perform it will make a difference to how blind people are perceived.

“I would say where there’s a will there’s a way. That’s true for anything – and you don’t have to go through it alone.”

Toben, who is currently studying for his GCSEs said his “ultimate goal” is to keep music in his life, if not as a performer then as a music therapist.

He said it has encouraged him to write again, as he was put off due to his spelling, but opera has exposed him to languages he would have never known.

“Music can move anyone. It can move mountains, basically.”

‘It is us putting barriers in his way’

Rhian Hutchings is the director of The Black Spider opera and said the WNYO has done all it can do support Toben and push him as a performer.

She said: “The approach I have taken is to work with him.

“It is us putting barriers in his way so it is discussing with him what I want to achieve and trying to find out the best way to do it.”

She said they take precautions to keep him safe but “at the same time he is incredibly game and he just wants to do it”.

“We are a company, we are making this piece together,” she added.

His mum Julia, said this attitude makes all the difference but is not something they always experienced.

She said: “He has always enjoyed singing and being in school choirs and It is amazing to see how he has been helped.”

“As a mum of a blind kid you always worry when you put them into new environments or clubs but this was the first time we were called up beforehand [by WNYO].

“They asked what the requirements were, what we needed, we were invited in before because Toben joined before lockdown so he hadn’t met anyone in the opera.”

She believes it made a difference they were “so thoughtful to make him feel secure”.

Court Fight Looms Over Sainsbury’s Autism Assistance Cat Ban

May 27, 2022

A man with autism is taking supermarket giant Sainsbury’s to court for refusing entry to his assistance cat.

Designer and writer Ian Fenn from London says the ban on Chloe, who helps him in daily life, is limiting his independence.

He says she helps him stay calm, but the supermarket argues that cats, unlike assistance dogs, present risks to food hygiene.

The case might set a legal precedent if it has to be ruled on by top judges.

Sainsbury’s says it is working with an environmental health team to find out how Ian and his cat can visit safely.

Ian was recently diagnosed with autism after many years of struggling with anxiety in busy or noisy environments.

He has trained Chloe to help him manage his way through daily life after discovering on a train journey that her presence improved what would otherwise have been a stressful situation.

When we meet Ian and Chloe in a south London pub, she’s sitting on a small, dedicated mat beside him on the sofa, gazing intently at the drinkers.

She wears a “service cat” jacket and occasionally nibbles treats. Over the course of an hour, she occasionally looks around, but does not leave the mat once.

Outside the pub, she sits on Ian’s shoulder or walks around on a lead.

“I realised that my life was a lot better with her being around – there’s a lot of autistic people suffering from depression. I’m not alone any more,” he says.

“I get sensory overload in busy environments and tend to shut down. But with Chloe I can focus on her.

“She brings structure to my life, she wakes me up in the morning, she tells me when to go to bed. It’s difficult to know how she feels about the relationship, but I feel that we’re a team now.”

This year, she’s been to more than 30 different restaurants and pubs, numerous public attractions, a hospital and on scores of trains and buses. Ian contacts business owners or operators in advance – but Chloe is not universally accepted.

In March, the pair visited a Sainsbury’s in Clapham, south London after thinking he had been given permission. But security and store staff told him he needed to leave his cat outside.

“I ended up becoming quite upset,” he says. “I got to the point where I couldn’t actually remember why I was in the store and what I needed to buy.

“It affected my confidence significantly. I stayed in the house for two weeks before I got the confidence back to go out.”

The store was the first rejection from a major supermarket. A nearby Tesco lets Ian visit, as the BBC witnessed. After Ian complained, Sainsbury’s told him it would only allow assistance dogs into its stores.

It said that while Chloe may be well-behaved, if it altered its general policy it could present a risk of other more unruly cats causing havoc – and it would have no way of assessing an animal’s behaviour or training.

And this is where the matter has become a potentially complicated courtroom fight: The law on assistance animals is not clear cut.

Ian’s view is that Chloe is a properly-trained assistance animal who is an essential “auxiliary aid” – a legal term for something that is providing support for someone with a disability.

Under the Equality Act 2010, business owners have a duty to make a reasonable adjustment so as to ensure that someone who has a disability is not placed at a substantial disadvantage. The UK’s definition of a disability includes autism, because the condition can be shown to affect day-to-day life.

In a statement, Sainsbury’s said: “We want to be an inclusive retailer where people love to work and shop and understand that some of our colleagues and customers may need support in our stores.

“At the same time, safety is our highest priority and our colleagues are trained to balance maintaining our high food hygiene standards with supporting all our customers who shop with us.

“We are in contact with the local environmental health team to see if there are ways we can help Mr Fenn to visit our store without compromising this.”

Ian does not agree that the supermarket’s current stance is reasonable and that is why he plans to argue his case before a judge.

“I appreciate a bloke wandering around with a cat is a bit unusual,” he says.

“The reality is that I don’t want that attention. What I want to do is just run my life normally. So when somebody says, ‘No, you can’t, because you have this creature that is helping you,’ it’s really upsetting.”

Unique case in the making

Chris Fry, one of the UK’s leading disability rights lawyers, is representing Ian.

“The key and fundamental principles are that service providers have a legal obligation to provide reasonable adjustments to accommodate disabled customers,” he says.

“Guide dogs are seen as being established as a reasonable or an auxiliary aid to help disabled customers.

“But there’s never been anything specific in relation to anything other than a support dog in this country.”

There have been assistance horses in service in the UK – but it has been a much hotter topic in the United States.

Four years ago, American airlines recorded 751,000 requests to take emotional support animals on flights – including miniature horses and a turkey. The matter turned into a national media debate when a passenger was banned from taking their support peacock on a plane.

Ultimately, the US’s national air transport rules were tightened up to ban emotional support animals other than dogs.

While US law is different, Chris says similar legal questions need to be explored in the UK as society’s understanding of disability equality and rights develops.

He says Ian can show the training he has provided Chloe – and a business should take that into account. But would a win mean anyone could take their trained gerbil or rabbit to the weekly shop?

“Cases like this provide clarity – for businesses and for individuals alike,” says Chris.

“I think the court will be concerned to make sure that if this case goes as far as final judgment, that it will set out some guidelines to help address issues.”

£1,200 Extra Support For Many Claimants

May 27, 2022

With many thanks to Benefits And Work.

 

Many Benefits and Work readers will receive up to £1,200 in additional support this year as a result of announcements made by the chancellor today.

The possible payments include:

  • £650 one-off Cost of Living Payment for those on means tested benefits
  • £150 Disability Cost of Living Payment
  • £400 Energy Bills Support Scheme
  • £300 One-off Pensioner Cost of Living Payment

£650 one-off Cost of Living Payment for those on means tested benefits

More than 8 million households on means tested benefits will receive a payment of £650 this year, made in two instalments. This includes all households receiving the following benefits:Universal Credit

  • Income-based Jobseekers Allowance
  • Income-related Employment and Support Allowance
  • Income Support
  • Working Tax Credit
  • Child Tax Credit
  • Pension Credit

DWP will make the payment in two lump sums – the first from July, the second in the autumn. Payments from HMRC for those on tax credits only will follow shortly after each to avoid duplicate payments.

Claimants will need to be in receipt of one of these benefits, or have begun a claim which is later successful, as of 25th May 2022 to be eligible for the first of the two instalments. HMRC and DWP will provide further guidance, and the government will set out the eligibility date for the second instalment, in due course.

This payment will be tax-free, will not count towards the benefit cap, and will not have any impact on existing benefit awards

£150 Disability Cost of Living Payment

Around six million people across the UK who receive the following disability benefits will receive a one-off payment of £150 in September:

  • Disability Living Allowance
  • Personal Independence Payment
  • Attendance Allowance
  • Scottish Disability Benefits
  • Armed Forces Independence Payment
  • Constant Attendance Allowance
  • War Pension Mobility Supplement

Claimants must be in receipt of, or have begun an eventually successful claim for, one of these benefits as of 25th May 2022 to be eligible for this additional payment.

For the many disability benefit recipients who receive means tested benefits, this £150 will come on top of the £650 they will receive separately.

These payments will be exempt from tax, will not count towards the benefit cap, and will not have any impact on existing benefit awards.

The government will make these payments directly to eligible people across the UK.

One-off £300 Pensioner Cost of Living Payment

Pensioner households will receive an extra £300 this year to help them cover the rising cost of energy this winter.

This additional one-off payment will go to the over 8 million pensioner households across the UK who receive the Winter Fuel Payment and will be paid on top of any other one-off support a pensioner household is entitled to, for example where they are on pension credit or receive disability benefits. Eligible households currently receive between £200 – £300, so the payment will represent at least double the support for this winter.

The Winter Fuel Payment (including the extra Pensioner Cost of Living Payment) is not taxable and does not affect eligibility for other benefits.

All pensioner households will get the one-off Pensioner Cost of Living Payment as a top-up to their annual Winter Fuel Payment in November/December. For most pensioner households, this will be paid by direct debit.

People will be eligible for this payment if they are over State Pension age (aged 66 or above) between 19 – 25 September 2022. There are certain circumstances where an individual above State Pension age does not qualify for the Winter Fuel Payment which can be found here on gov.uk

The government will make these payments directly to households across the UK.

Energy Bills Support Scheme doubled to a one-off £400

Households will get £400 of support with their energy bills through an expansion of the Energy Bills Support Scheme.

As well as doubling the £200 of support announced earlier this year, the full £400 payment will now be made as a grant, which will not be recovered through higher bills in future years.

Energy suppliers will deliver this support to households with a domestic electricity meter over six months from October. Direct debit and credit customers will have the money credited to their account, while customers with pre-payment meters will have the money applied to their meter or paid via a voucher.

This support will apply directly for households in England, Scotland, and Wales. It is GB-wide and we will deliver equivalent support to people in Northern Ireland.

This support is in addition to the £150 Council Tax rebate for households in England in Council Tax bands A-D, which was announced in February, and which millions of households have already received.

Full details of the payments are available in the Cost of living support factsheet: 26 May 2022

 

Steven Gallagher, 48, Has Double Hand Transplant

May 27, 2022

Steven Gallagher laughed when it was first suggested he could have a double hand transplant.

But five months on from pioneering surgery that could have cost him all use of his hands, he is now pain-free and enjoying “a new lease of life”.

Steven, 48, developed an unusual rash on his cheeks and nose about 13 years ago, and pains in his right arm.

Doctors initially thought it was lupus and then carpal tunnel syndrome, and the father-of-three had an operation.

But when the pain returned in both arms, he was referred to a specialist who confirmed he had scleroderma, an autoimmune disease that causes scarring of the skin and internal organs.

The condition affected areas including his nose, mouth and hands. About seven years ago, his fingers started curling in until they were in a fist position. He was suffering “horrendous” pain.

“My hands started to close, it got to the point where it was basically two fists, my hands were unusable,” he recalled. “I couldn’t do a thing apart from lift things with two hands.

“I could not grab anything, it was a struggle to get dressed and things like that.”

Steven, from Dreghorn in North Ayrshire, was forced to give up his work as a roof tiler.

He was referred to Professor Andrew Hart, a consultant plastic and hand surgeon based in Glasgow, who first raised the possibility of a double hand transplant.

“At the time I laughed and thought, that’s space-age kind of things,” he said.

After further conversations with Prof Hart, Steven also spoke to Professor Simon Kay, a consultant plastic surgeon at Leeds Teaching Hospitals NHS Trust who led the UK’s first double hand transplant operation in 2016.

Both outlined the risks involved.

“They were really understanding and really open about what might happen, that I could lose my hands altogether,” he recalled. “They said it was unlikely but it was a risk.

“My wife and I spoke about it and came to the agreement to go for it. I could end up losing my hands anyway, so it was just a case of letting them know I was going to go with it.”

Steven, who has three daughters aged 12, 24 and 27, had to undergo psychological evaluation to ensure he was prepared for the transplant.

‘These hands are amazing’

He is believed to be the first person in the world with his condition to have the surgery. It involved a 30-strong team of professionals from many disciplines and was carried out in Leeds over a 12-hour period in December 2021 after a suitable donor was found.

“After the operation, I woke up and it was quite surreal,” Steven said.

“These hands are amazing, everything has happened so quickly. From the moment I woke up from the operation I could move them.”

After spending four weeks in Leeds General Infirmary following the operation, Steven now makes regular visits to hospitals in Glasgow for physiotherapy and monitoring.

Although dexterous tasks such as doing up buttons are still beyond him, his improving condition means he can do things like stroke his dog, turn on the tap and fill a glass of water.

“It has given me a new lease of life,” he added. “I’m still finding things hard just now but things are getting better every week with the physio and the occupational therapists. Everything is just slowly getting better.

“The pain is the big thing. Before the operation it was horrendous, I was on so much pain relief it was unbelievable, but now I’ve no pain at all.”

Prof Kay said the operation had been a “huge team effort” and a hand transplant was “very different from a kidney or other organ transplant”.

“Hands are something we see every day and we use them in so many ways,” he explained.

“For this reason, we and our expert clinical psychologists assess and prepare patients, in order to be sure that they will be able to cope psychologically with the permanent reminder of their transplant, and the risk the body may reject the transplanted hands.”

For Steven, the operation has been transformative. He now hopes to return to some kind of work once his hands have improved enough.

PIP Review Chaos Spreads To Other Benefits, Motability Cars, Bus Passes

May 26, 2022

With many thanks to Benefits And Work.

Over the past weeks we have been covering the issue of the repeated delays to PIP reviews and renewals and how these have affected Blue Badge holders.  We’ve now heard from readers telling us that the delays are also affecting other benefits, bus passes, Motability cars and increases in PIP for changes of circumstances.  

But above all else it’s the enormous anxiety that delays and the DWP’s failure to keep people informed that is causing people real harm.

Problems caused by PIP review delays

A recent article focused on the problems claimants have been having renewing their blue badge because their PIP award was being extended by only short periods.

However, many claimants have now been in touch with us to tell us about other problems caused by the delays.  These include:

  • Not being able to lease a Motability car
  • Not being able to renew a Bus/Freedom pass
  • Other benefits being stopped or reduced
  • PIP not being increased even though needs have greatly increased

Some of our readers comments are below (minor typos have been corrected for ease of reading)

Other benefits and premiums affected

Some readers have found that the delay in reviewing their PIP award is causing issues with other benefits.  One reader says that this has affected their pension credit, council tax and housing benefit.

“I have had a dreadful year regarding my PIP review.  It arrived in April 2021, a full year before my extended end date. This impacted my Blue Badge renewal which I could only get for one year. In August 2021 I retired and received my pension and pension credit. The pension credit stopped on March 3rd, 2022 because it is linked to the PIP end date, also It has caused problems with my renewing my Blue Badge a second time . . .My council tax and housing benefit is also affected by this. Today I received an email to inform me that they have been stopped. The situation is a nightmare to deal with especially when you are ill.”

Another reader is struggling both to get their change of circumstances assessed and having difficulties with their daughter’s carer’s allowance

“I sent off my renewal last July for consideration – have constantly advised them my condition has considerably worsened.   All I heard from them was a text at the end of July to say paperwork had been received.   Phoned PIP on 16 September, 2 December, 15 February and then lastly 25 April to constantly be told it’s in a pile to be looked at!!!!    When I say how debilitating it is and a daily worry all I get told is if your benefits are increased it will be back dated.   That’s NOT the issue it’s the constant daily worry.   My daughter has now been told her carers allowance will stop in May and my housing benefits will alter too . . . Help help help.” 

Other readers have also been threatened with the loss of carer’s allowance.

“Myself and my wife have had our PIP extended. My wife’s was due to run out last week in April. We had heard nothing except for a letter from my carers allowance saying that was about to end. We contacted PIP to be told my wife’s PIP was extended to July a couple of days later we received a text message saying they acknowledge receipt of our “review form” (from june 2021) that we didn’t need to phone for an update again, they would contact us with a decision.”

“My husband has had his review in since July 21 and it has been extended. We have had no communication from DWP PIP but Carers contacted myself telling me my CA is stopping, several calls later I got to the bottom of the situation. I am closely watching payments, letters news etc”

One commenter told us that their brother’s ESA was being affected by the PIP review delay:

“My brother is still waiting for a decision on renewal of his PIP claim having sent the forms in last June and we have not been told if his money is going to stop. However, his ESA is going to be considerably reduced because they are removing his disability premium because they have had no decision on his PIP. PIP have given no indication of when his decision will be made and ESA are not interested, just that he will lose his money. Feel completely helpless.”

Mobility cars not being leased

Some readers have told us that they have been unable to lease a Motability car because they are waiting for their PIP review to happen.

“My award was up in January 2022 it has been extended for the second time until July 22 but I cannot get a mobility car without the review. It was sent in last may and even though there is a mountain of evidence they keep saying I need an assessment. I wrote to Chloe Smith and my local MP Ian Burns. Ian helped me with my blue badge problem as they said the process for a blue badge application can take 12 weeks. The same amount of time as my extension so it was a vicious circle. I’m still waiting to hear from the DWP after having 2 people email me with regards to my issue. It’s ridiculous I’m a prisoner in my own home as I cannot drive my manual car with my mobility issues. I just want my assessment done.”

“Its ok saying our awards will continue until they get to our reviews ,but i need to show Motability a new award so I can receive a Motability car. As pip claimants are aware you need a minimum of a year left of your award to get a Motability car.  I have roughly 10 weeks left of my award and its shocking how they can treat claimants this way”

Bus/Freedom pass not renewed

An award of PIP can be one route to a bus pass or Freedom pass, meaning that yet again claimants are affected when PIP reviews do not happen.

“My PIP award is to be due to end 6 June, after 2 extensions. I submitted the reassessment information by the date I was given in October but  I have heard nothing. Meanwhile, my disability bus pass has expired and the council will not renew without a new dated PIP assessment document.”

Another reader initially had problems with their Freedom Pass, but opted for a local authority assessment in order to get round the lack of a PIP award letter.

“I have had my PIP automatically renewed for another year or so about three times now. I have renewed my blue badge using the extension letter and had no problems in Lewisham, London. The only place I could not use my extension letter was to apply for a freedom Pass. I was told this letter was not valid, only the PIP award letter was, but obviously that has the old expired date. I had two options either contact DWP or go through their own medical. I opted for the latter and after two weeks I got my Freedom Pass which is valid for five years, without having to do any medical at all, again with Lewisham in London.”

Change of circumstances not acted on

The DWP have repeatedly implied that delays to PIP reviews are not a problem, because people who report a change of circumstances because their condition has deteriorated will not have to wait to get assessed.  But we are hearing a very different story from some of our readers.

“I sent my review form, with additional papers regarding change of circumstances ie. my health has changed more for the worst. This was in February and I still haven’t had a letter responding to the additional information.  I have not received a letter informing me of any extension either.”

“I sent my additional papers regarding a change of circumstances in the end of January/February and I haven’t had any response either relating to this.”

“I have now been waiting for a review for over a year now my circumstances have massively changed for the worse. I keep ringing them and I just get told they are extending it, I’ve never known anything like this before.”

“My husband has mental and physical health problems. His needs have substantially increased so I asked that his care needs be reviewed and also his mobility be reviewed in line with the Leap guidelines. This was 18 months ago and no review has taken place just a continuance of his care award.”

Delays and anxiety

More than anything else, it’s the uncertainty, the fear that a PIP award might just end at any moment and not knowing when or whether you might be called for an assessment that is causing people enormous worry and even making their health conditions worse.

“I sent my review in last September and my award ended this month. I have just got through after a 45 minute wait to be told that it’s with the assessors however it’s been extended until August. I wasn’t sent a letter regarding this. The lady said there is a huge backlog & if it hasn’t been sorted out by August then it will be extended for a further 3 months.” 

“My renewal claim ended July 2021, its now May 2022 I’ve just had a text from DWP to say they will review my claim and I might need to see a medical professional.  I’ve had no correspondence at all, so I take it it was done digitally.  How long will this take, its making me ill.”

“They don’t understand the anxiety that they cause, my head is spinning with this.”

“My review went in last august and I’ve heard nothing since, my award ends in June and I’m worried but too scared to ring them!”

“My PIP award has been extended twice and my blue badge was only allowed for one year.  My review went in june 2021 and I have become so stressed over it, it’s been nearly a year without an assessment.  I have given enough medical evidence with my form so why am I still waiting? When my carer phoned they said I’m down for an assessment but no idea when that might be.”

No end in sight for PIP review delays

At the moment there is no end in sight for PIP review delays. 

So long as the DWP continues to prioritise new claims and assessment companies are unable to meet demand, existing claimants will be left in a state of uncertainty.

Plans to change the assessment system so that the same company carries out both PIP and ESA assessments in a given area could well lead to even further delays, as companies learn to carry out assessments for which they have no previous experience.

We hope that many more claimants follow the example of some of our readers and complain to their MP about the delays and lack of communication they are experiencing.  It may take time, but it is only pressure from parliament that is likely to improve the situation.

Accessibility On The Elizabeth Line

May 26, 2022

An email from TFL:

The Elizabeth line is now open.

If you use step-free access and are using the Elizabeth line for the first time, or making a new journey, and need more details about accessibility at each station, please speak to a member of staff. 

All Elizabeth line stations will be step-free from street to platform. 

These stations have level access from platform to trains: 

  • Paddington
  • Bond Street (opening later in 2022)
  • Tottenham Court Road
  • Farringdon
  • Liverpool Street
  • Whitechapel
  • Canary Wharf
  • Custom House
  • Woolwich
  • Heathrow stations  

Custom House station has step-free access from street to train if using carriage 5, but manual boarding ramps are available if customers wish to use them. 

At other stations on the line, including Abbey Wood, staff will deploy a manual boarding ramp between the platform and train. You do not need to book this in advance. 

If you need step-free access it is best to board at carriage 5, at all stations, where there are dedicated wheelchair spaces, regardless of whether you need a manual boarding ramp or not. This generally stops at the middle of the platform and can be found by looking for:

  • Blue wheelchair signs on the train doors
  • Blue wheelchair stickers on the floor of the platform, outside carriage 5
  • Blue wheelchair signs on the wall of the platform

To plan a step-free journey visit our website or use the TfL Go app. Our
step-free map has been updated.

Travel mentors
You can use our free travel mentoring service and our travel mentors can offer you advice or assist you on your journey to help you travel independently on this new part of the network.

Turn up and go
Our station staff are here to help you. Elizabeth line customers who need assistance onto and off trains can use the same ‘turn up and go’ service as Tube and London Overground customers. Find out more about getting help from staff.

Elizabeth line trains
The new trains each have four dedicated wheelchair spaces close to the doors and separate from multi-use spaces for wheelchair users, buggies, luggage and cycles. Dedicated priority seats have been marked with stickers above the seat. The dedicated wheelchair spaces can be found in carriage 5. 

An emergency alarm button is located at every wheelchair space on the trains, which can connect you with the driver in the case of an emergency.  

Yours sincerely,

Julie Dixon
Interim Customer & Revenue Director 

Billie Eilish: Living With Tourette’s Is ‘Very Exhausting’

May 25, 2022

Billie Eilish has revealed that living with Tourette’s Syndrome (TS) can be “very exhausting”, in a new interview.

The 20-year-old experienced an on-camera tic when speaking on David Letterman’s My Next Guest show on Netflix.

“If you film me for long enough, you’re going to see lots of tics,” she said.

Over 300,000 children and adults are living with TS in the UK, according to Tourette’s Action.

TS is a condition that causes a person to make involuntary sounds and movements called tics.

It usually starts during childhood, but the tics and other symptoms usually improve after several years and sometimes go away completely.

Billie said during the interview that she doesn’t experience tics while performing and that some specific tics have gone away over time, but others still occur on a regular basis.

“These are things you would never notice if you’re just having a conversation with me,” she says, adding, “but for me, they’re very exhausting.”

Offensive reactions from others

The singer said she “really loves” talking about her experience with TS, but acknowledged she is “incredibly confused by it”.

And she admitted people don’t always react in a good way when she experiences a tic.

“The most common way that people react is they laugh because they think I’m trying to be funny. I’m always left incredibly offended by that,” she said.

That reaction is something Terrina Bibb can relate to.

The 29-year-old, from Redditch in the west Midlands, started showing signs of tics when she was 21, and after going through lots of neurologists, was finally diagnosed at 24, which is relatively late.

She recalls a year ago someone staring at her constantly in a restaurant during a “really bad tic attack”.

“It’s just rude and it frustrates me. People ask ‘why do you have to swear so much?’ I wish I didn’t have to, but it’s something I can’t control,” she says.

She wants people to treat her – and others with TS – normally, adding she doesn’t “mind educating people on it, but I just don’t think people should be rude”.

On a day-to-day basis, Terrina is a self-employed artist so is able to work from home.

There are “good days and bad days”, as she lives with verbal and motor tics.

“It is a very disabling condition. I am on a walking stick constantly, I can’t walk properly and I also have a wheelchair as well.”

Terrina says the mornings can be “really bad” because of leg tics, and has to ask her boyfriend or mum for help with tasks.

Things that help

Terrina uses her art as a way of “releasing those tics”.

“Especially the hand tics that I’ve got, holding a pen and I’ll do like a scribble like zigzag style. So those tics get released out on something that I love doing, and it’s quite relaxing.”

She also has a boxing punch bag in her garden which she says “helps stop my Tourette’s for a few hours”.

Terrina feels for someone with the following of Billie Eilish to share her experience is significant.

“Hopefully, it’ll make it a bit more normalised,” she adds.

Everyday Review

May 25, 2022

In British Sign Language, the sign for a witch is fingers held above your nose, moved down in an elongated curve to draw a beak. But at a gathering for the new moon – a signifier of fresh hope – our four performers create a new sign, one that rids the term of its ugly, prejudiced stereotypes. With a thumb wiped back and forth over a forehead, their one symbolises wisdom.

Marking the 20th anniversary of Deafinitely Theatre, which produces work for deaf and hearing audiences, this show is inspired by the horrific statistics about the rise of domestic abuse during lockdown. Made up of a set of raw, frank stories detailing a variety of domestic and sexual abuse faced by deaf women and non-binary people, Everyday uses the idea of spiritual ritual as a tool for healing.

Sign and speech are blended evocatively to provide monologues possessing extraordinary dynamism. We see how abuse sneaks up on a person and traps them. We see, too, how being deaf adds a further layer of vulnerability. All are real stories as told to the director, Paula Garfield, and performed emotively by actors who speak the pain as if it is their own.

The atmosphere created is soft and supportive, but if you’ve experienced sexual assault, take care; Pan’s (Bea Webster) forceful performance of repeated abuse from a family member sucks the air out of the room.

Our performers are presented as witches, their bubbling cauldron replaced with a pot of tea, their homely set evocative of a shelter for survivors. The connection between these witchy rituals and the tales they tell is not fully fleshed out, feeling a little like two good ideas squashed together, but it does create a framework of a community in which these storytellers can seek safety.

While Everyday’s topic is heavy, the overwhelming feeling is one of tenderness. The performers are gentle with each other, and throughout, the dread is interspersed with laughter. New Diorama host this show impeccably, with interpreters at the bar to ensure the entire space is inclusive. In this simple but powerfully told collection of real experiences, Deafinitely Theatre demonstrates the power of sign language to tell a story that can be hard to share.

At New Diorama theatre, London, until 11 June; then touring until 25 June.

If you are experiencing abuse, in the UK you can call the national domestic abuse helpline on 0808 2000 247, or visit Women’s Aid. In Australia, the national family violence counselling service is on 1800 737 732. In the US, the domestic violence hotline is 1-800-799-SAFE (7233). Other international helplines may be found via www.befrienders.org

Anger As Man With Guide Dog Told To Leave Marks & Spencer Shop

May 24, 2022

A senior executive at the charity Guide Dogs said he felt “publicly humiliated” when he and his guide dog, Faldo, were illegally told to leave a Marks & Spencer shop in west London.

Dave Kent, 62, a corporate engagement executive at the charity who has been totally blind since he was 18, said he was “curtly” asked to take his golden retriever out of the Mortlake department store three times by a security guard last Friday.

He said the incident felt like a “kick in the nuts” and that it highlighted a continuing problem of blind and partially sighted people being refused entry or ejected from shops because of their guide dogs.

A Guide Dogs survey found that three-quarters of guide dog owners have experienced being illegally turned away from public buildings.

M&S apologised to Kent and accepted that its security team was wrong to ask him to leave. Kent has written to the chief executive of M&S, Steve Rowe, urging the company to inform its security team of their legal duty to allow free access to guide dogs and their owners.

Kent was shopping with a friend for shorts and other summer clothing when they were stopped on the way to the checkout and asked to leave. Faldo had clearly been wearing his guide-dog branded harness at the time, Kent said.

When Kent stood his ground, the security guard twice more insisted that they should take the dog out of the store. When he asked to see the store’s manager he received an apology and the offer of a complimentary drink.

Recounting the incident, Kent said: “A cup of tea. I just thought don’t patronise me.” He left the store without buying his holiday shorts.

He said: “Every time this happens, it’s a kick in the nuts. All I want to do is go to Marks & Spencers and do what any seeing person would do in the course of their day. And I want to do it unhindered. I am sickened by these security guards.

“M&S know very well their obligations under the equality duty. But the problem arises with guide dogs with these third party security companies they employ. They’re probably on a low wage, but they’re not taught.”

In his letter to Rowe, Kent wrote: “Whilst the response from the manager was polite and measured, this incident left me feeling utterly wretched. To be publicly humiliated in this fashion in sight of other shoppers and members of staff, left my dignity in tatters.

He added: “Guide dogs are provided to visually impaired people to support them with freedom and independence. And to be challenged in this way, when all I wanted to do was to go about my lawful business unmolested, like any other citizen, is absolutely unacceptable.”

He added: “It is imperative that you instruct the people you employ as your security personnel to be fully cognisant of your corporate responsibilities regarding the admittance of guide dogs and other assistance dogs, in the vain hope that this vile situation should not happen again.”

Chris Theobald, public affairs and campaigns manager at Guide Dogs said: “It is completely unacceptable and illegal for a business or service to refuse entry to a customer with a guide dog, yet, sadly, it happens all too often. Our research shows that three-quarters of guide dog owners have been illegally turned away, and this discrimination is leaving people with sight loss left out of life.”

Last week, one of Kent’s best friends, the BBC reporter Sean Dilley was told he was not allowed to take his guide dog, Sammy, into two London Tesco stores. Kent is working on a “reparatory” project with Tesco.

He said: “The problem is with the law, unless it really bites, it’s a bit toothless.”

A spokesperson for M&S said: “What happened is unacceptable and we sincerely apologise to Mr Kent. Our stores should be accessible for everyone and we welcome assistance dogs. We have worked with the Royal National Institute of Blind People to develop online assistance dog awareness training, which all of our colleagues complete.”

They added: “We are picking up with our security providers to ensure guards across stores are fully aware of our approach and are contacting Mr Kent to apologise directly.”

DWP To Get Powers Of Arrest, Search And Seizure

May 24, 2022

With many thanks to Benefits And Work.

The DWP is to get the power to arrest claimants, search premises and seize evidence as well as being able to fine claimants where they do not have enough evidence to bring a criminal case for fraud, the government has announced.

The new measures, many of which will not be possible to introduce without an Act of Parliament, are aimed primarily at cutting fraud in Universal credit (UC).

In total, the DWP are to spend £200 million a year on the new initiative, which will see 1,400 more staff in frontline counter-fraud teams plus a new 2,000 strong team solely for checking universal credit claims.

The sweeping new powers will mean that designated DWP staff will be able to arrest claimants, search premises and seize any evidence they find without needing to use the police. The DWP say this will put them on a par with HMRC and the Gangmasters and Labour Abuse Authority (GLAA).

There will also be new powers for the DWP to force other organisations, especially banks, to provide data about claimants on a much wider scale than is currently legally allowed.

At the moment the DWP can only require organisations to give them information about named individuals where there is already a suspicion of fraud.  The DWP want much broader powers to access information.

They say that a “small test” has been run with a bank to assess the potential of using a feed of banking data to identify possible fraud and error, “with very encouraging results”.

The DWP will be able to impose civil penalties on claimants based on a percentage of any overpayment, where the DWP does not have enough evidence to prosecute. This will be in addition to having to repay the whole amount of the benefit the DWP consider to have been fraudulently obtained.

The DWP already have the power to impose civil penalties, but they have to have evidence sufficient to meet the standard for criminal prosecution before they can do so.  Under the new proposals, a lower level of evidence would be needed in order for the department to impose a penalty.

The DWP will also be able to impose penalties on organisations which the it considers are “promoting benefit fraud schemes online, creators and sellers of fraud toolkits on social media or someone supplying fake ID.”

More details about the anti-fraud plans are available on the .gov.uk website.

Neighbours’ Alan Fletcher Reveals Alopecia

May 23, 2022

Neighbours veteran Alan Fletcher has laid to rest a few fan concerns on social media.

Known for playing Karl Kennedy for close to three decades, the Aussie usually sports some facial fuzz to go with his grey hair, but now he’s completely bald on both accounts.

Speaking via the soap’s official Twitter channel, Fletcher explained the situation this week.

“A lot of fans have expressed a little concern about my health on the internet and there’s been some media inquiries as well, so I just wanted to put something to rest,” he said. “I’m absolutely fine, I’m fit and well working on Neighbours and having a great time.

“But, I can report to you I do have a disorder called alopecia areata.

“Now, if you watched the Oscars, you know that’s the thing that caused a bit of a discord between Will Smith and Chris Rock in referencing Will Smith’s wife.”

Jada Pinkett Smith’s own alopecia diagnosis became the subject of one of Oscars host Rock’s jokes, leading eventual Best Actor winner Smith to walk onstage and slap the comedian across the face.

This content is imported from Twitter. You may be able to find the same content in another format, or you may be able to find more information, at their web site.

“Alopecia areata causes patchy hair loss. I started to lose hair in my beard and then on my scalp in patches, so eventually I shaved my beard off and then my hair became so patchy on my head, I had to get rid of most of that as well.

“UK audiences have seen Dr Karl without hair, Australian audiences are going to see it on June 2, so stay tuned for that,” Fletcher added before cheerily whipping his cap off.

“I know a lot of you are going to be pretty shocked, but I have no problem with it. In fact, it’s kind of fun!”

The Neighbours legend, who briefly portrayed a different character named Greg Cooper in the late ’80s, encouraged fellow alopecia sufferers to seek out professional support if they’re struggling too.

“Alopecia areata can be quite serious for people, particularly from an emotional point of view,” he said. “Sudden hair loss is really troubling for a lot of people, and particularly for young people who can be terribly bullied.

“There is support out there. There are alopecia areata associations in Australia and in the UK, so reach out for help if you need it.”

Frank Gardner: ‘It Happened Again’ – Why Are Wheelchair-Users Left On Planes?

May 23, 2022

If you use Twitter you may have seen Frank Gardner tweet his frustration at being left on a plane at the weekend after Heathrow Airport failed to deliver his wheelchair to him when he landed. It’s a problem lots of wheelchair-users have faced – but what causes it?

“It’s happened again. Stuck on an empty plane at Heathrow airport long after everyone else is off,” Frank angrily typed on Sunday night from a runway at the UK’s largest airport having arrived from Estonia via Helsinki. “‘No staff to get my wheelchair off the plane’. I am SO disappointed.”

The security correspondent’s tweet was liked 43,400 times as followers sympathised or expressed their shock at the incident.

While many wheelchair-users told the BBC’s Access All podcast they had often experienced similar incidents, Heathrow Airport cited Covid-19 as the problem.

Ben Furner experienced the same thing just weeks earlier at a different British airport. He was left on a plane while someone went in search of his mobility scooter.

“It had been agreed that the mobility scooter would be made available to me at the entrance of the plane, but there was nobody to fetch it up, so I was left.”

He was offered the use of an airport wheelchair and told he could go to baggage reclaim to collect his scooter.

But Ben explains this is unacceptable. Wheelchairs are often customised and built to personal specifications and a generic, ill-fitting, wheelchair won’t necessarily support someone in a safe and comfortable way.

In the end, when the new crew boarded the plane to prepare for the next flight and found Ben still sitting there, the captain intervened and arranged for his scooter to be retrieved.

“I was lucky because the captain took a personal and direct interest…that of course, shouldn’t be required.”

According to the Civil Aviation Authority, the UK’s regulator, the responsibility lies with the airport to provide assistance to passengers when they are on the ground. That includes retrieving wheelchairs from the hold and returning them to passengers who have landed.

When the system doesn’t work, or the communication breaks down, it’s frustrating and it’s not always a one-off.

“This is now the fourth time that this has happened to me in just over four years,” Frank sighs.

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How do you book (and complain) about airport assistance?

  • The UK government recommends passengers request assistance through their airline, tour operator or travel agent at least 48 hours before travel
  • If a passenger has not pre-notified, assistance will always still be provided but you might have to wait longer to be helped
  • If things go wrong and you’re unhappy, the Civil Aviation Authority (CAA) recommends you take your complaint directly to the airline or airport
  • If you remain dissatisfied, you can refer your complaint to an alternative dispute resolution (ADR) body which provides alternative methods, such as mediation and conciliation, instead of going to court

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Heathrow Airport says it wants all passengers to have a “seamless journey” and it was “disappointed” for Frank. “We apologise for this,” it said, citing Covid-19 and the subsequent impact as the reason.

“As the airport rebuilds post-pandemic, all organisations across the airport are scaling-up resources so that we can get back to operating at a more normal level as quickly as possible.

“Unfortunately, the delay Mr Gardner experienced was a result of the airport’s ground handling agents struggling with a colleague shortfall.”

Improvements to passenger access support at airports was on the horizon in 2018 when the government announced the launch of Aviation 2050, its consultation and strategy for the next three decades of air travel, but that initiative has also stalled due to Covid-19.

The results of the consultation were due to be released in 2019 with a focus on helping the industry thrive post-Brexit, improve its impact on the environment and improve access with the introductory report admitting “there is more work to do”.

But many disabled passengers remain unsatisfied.

According to the document, more than 3 million requests were made for special assistance in the UK in 2017, a figure which is only “increasing”.

It says 25% of passengers who fly have a disability or health condition and, of those, 60% find it difficult to access and use airports.

It admits there are a “number of common challenges” including a “lack of clarity about roles and responsibilities across airlines, airports and airside services”.

This is the biggest bugbear wheelchair-users have, but although Aviation 2050 was set to be published in 2019, it’s still not been seen, three years on.

The Department for Transport has admitted that due to “unprecedented challenges” related the the pandemic, a formal response to the Aviation 2050 consultation has not been published.

It says it will now publish a strategy, in due course, which will focus on the next 10 years, instead.

“While these are challenging times for the industry, disabled passengers deserve better,” it said in a statement.

It says it’s ready and “determined” to make improvements using its Aviation Consumer Policy Reform Consultation, a different strategy which includes a suggestion of greater financial insurance if wheelchairs are damaged on UK domestic flights – another gripe for many wheelchair-users. The result of this consultation is due in the next few weeks.

Ellis Palmer, a wheelchair-using journalist, says he finds plane travel “anxiety-inducing” but is sanguine.

“There’s no point stressing about being the last person on the plane because ultimately they have to bring that chair up to you at some point,” he says.

From his experience he finds smaller, regional, airports to be “absolutely fantastic” at assistance, while international hubs are more difficult.

And he finds Spanish airports particularly stress-free where access workers wear yellow t-shirts.

“They’re really easy to find when you’re going around the airport in a way that they’re just not at UK airports.”

For Frank, while his tweets might seem a harmless way to express frustration, they have been effective at making change happen in the past.

After a tweet in 2018 about this very situation – being left on a plane – the BBC journalist forced Heathrow to change its policy which is why wheelchairs are now delivered to plane doors rather than the terminal, even if it doesn’t always work.

He says he has further ideas on how this system can be improved.

“To me, this is about allocating the right resources where they’re needed,” he says, suggesting the departure airport could inform the destination airport that a passenger might need assistance, before the plane has even left the ground.

“That would be a way of pre-empting this,” Frank says. “It’s not that they don’t care, but it is a huge busy airport and they are frankly, not at the moment, up to the task of giving disabled passengers the service that they deserve.”

After his latest apology from Heathrow, Frank quickly updated his followers: “Clearly still a way to go to stop this happening. Every time it happens to me it’s happening to others around the UK.”

Cleethorpes Beach Buggies Provide Seaside Access For All

May 20, 2022

A mother with a disabled child is spreading the word about special beach buggies that allow people with mobility problems to access Cleethorpes beach.

Lorna Fillingham described the buggies as a “ticket to freedom” for her daughter Emily-May.

Ms Fillingham said not many people knew about the scheme.

The chairs are available to hire for free from the town’s resort office by Cleethorpes Pier.

World IBD Day

May 19, 2022

A woman is using Instagram to show the “real side” of life with Crohn’s disease to help others with the debilitating condition.

Rebekah Gardner from North Shields was diagnosed with Crohn’s in 2009 after being rushed to hospital following weeks of being unwell.

The 28-year-old said from there it had been a “constant battle” dealing with the incurable inflammatory bowel disease which affects more than 500,000 people across the UK.

Rebekah started her own Instagram page in 2019 to raise awareness of the invisible disease. We spoke to her about her journey for World IBD Day.

Everest: Jamie McAnsh Climbs To Base Camp On Crutches

May 19, 2022

A man on crutches has reached Everest base camp – eight years after waking up paralysed.

Jamie McAnsh, from Cwmbran, Torfaen, has complex regional pain syndrome (CRPS) which causes persistent severe and debilitating pain.

But after an 11-day trek, Jamie has realised his childhood dream and reached base camp at 5,364m (17,600ft).

“There were times on this challenge where I didn’t think I was going to make it,” he said.

“I was absolutely exhausted. It’s been an emotional time,” Jamie told BBC Radio Wales Breakfast:

“It didn’t really hit me that I had done it until the next day.”

On 6 January 2014, Jamie went to bed “as normal,” but woke up the next morning paralysed from the waist down after rupturing his spine in his sleep.

It took another 13 months for Jamie to be diagnosed with CRPS, which has no cure but often gradually improves over time.

He had to learn to walk again – and after a gruelling recovery he has regained some of his mobility but still relies on crutches to walk.

“One of the hardest things the team had to think about was where to put their feet, but I had to think about where to put my feet and my crutches,” he said after completing his Everest challenge.

As Jamie reached the mountain’s memorial, he stopped to pay tribute to his father and nephew, who have both died.

“I took their memory with them throughout the whole trip and I thought it was a lovely thing to leave their memory in somewhere I have thought about for many years,” he said.

Jamie already has his next challenge in his sights, but this one is a bit closer to home.

“I’ve always loved Everest, but I’ve always loved Wales, so the 800-mile coastal path is definitely up there on my list,” he said.

Is Disability Representation In Books Getting Better?

May 19, 2022

Are we finally getting some good disability representation in fiction? Certainly, the publishing industry seems to have belatedly recognised the need to get disabled writers through the door. After a successful social media campaign, Amazon has recently introduced a “disability fiction” section. The Society of Authors now has a dedicated peer network for disabled and chronically ill writers. And in 2020, the Barbellion prize was set up to reward brilliant work by disabled authors. But does any of this mean that disabled people are finally seeing themselves and their experiences in the novels they pick up in Waterstones? It depends where you look.

Children’s literature is definitely getting better at representation. Indeed, when I asked disabled friends and acquaintances to name their favourite disabled character, almost all of them highlighted books aimed at younger readers, like Elle McNicoll’s A Kind of Spark. Lizzie Huxley-Jones, who is disabled themself, says that through their work as a children’s author and sensitivity reader they are seeing signs of progress. “Even just in the last three years in the UK – probably five if I’m being extremely generous – I feel like there has been a big push around securing autistic talent, publishing autistic stories, which I think is great because, historically, autistic people really didn’t get to tell our own stories.”

While Huxley-Jones acknowledges that there are still overlooked dynamics – characters with chronic pain, for example, or disabled kids of colour – they attribute the recent progress to a recognition that children deserve to see themselves reflected in the stories they read. There’s also the simple fact that a lot of kids’ books centre on a group of friends, rather than one protagonist, which creates space for more diversity.

Huxley-Jones hasn’t seen the same commitment to representation in the adult literature sector, where they say disability is still seen as a niche topic. While there are some novels with disabled characters out there, a concerning number of them stick to damaging tropes – perpetuating stereotypes rather than portraying disabled people with the same depth and complexity as other characters. As Cat Mitchell, a lecturer in writing and publishing at the University of Derby, puts it, there’s either “a tragedy narrative where the character dies at the end, or a narrative where either the person miraculously recovers or it’s discovered that their disability or illness was fake all along”.

Several of the people interviewed for this article pointed to Jojo Moyes’s Me Before You as the ultimate example of the problem: the main character becomes disabled and then – spoiler alert – kills himself. “Not only are these narratives not realistic,” Mitchell says, but “they’re never written as if there are disabled people in the audience. It’s that nondisabled gaze that they are writing for, which is really problematic.” She is equally disparaging of triumph-over-adversity narratives, in which a disabled person’s struggles in an ableist world are used to make a nondisabled audience feel lucky by comparison.

These tired stereotypes are exactly what Victoria Scott, who co-led the campaign for the Amazon disability section, set out to tackle with her fiction. Her debut novel, Patience, drew on her relationship with her nonverbal sister to explore the complex ethical questions that will come with a future in which genetic conditions can be cured. “I wrote it from the family’s perspective,” she says, but she purposely gave the disabled character a distinct and idiosyncratic voice. “I feel like society pushes people like my sister into the shadows, and it doesn’t acknowledge them … so when I wrote Patience, I wanted her to be an awesome character. She’s funny. She’s a bit sweary. She’s a massive Take That fan. And she’s got all these different parts of her personality. She’s a really interesting, multifaceted human being.” Scott’s determination to portray the inherent value of disabled life is in stark contrast to all the stories in which disability is a byword for worthlessness.

Books like Scott’s, which put disability front and centre, are important in an industry that undervalues these stories and sees them as niche rather than universal. Scott wanted to create the Amazon category to dispel this idea, and to encourage other authors to write stories that treat disability as interesting and worthy of artistic attention. Equally important, says Mitchell, is “incidental representation,” where a character “just happens to be disabled and it’s not really central to the plot”. This is almost unheard of in adult fiction, she says.

The reasons for this lack of representation are varied, but Mitchell and Huxley-Jones point to the inaccessibility of publishing as an industry. Hours are long and, for authors, pay is often delayed. Much depends on making contacts at long and inaccessible conferences. And because publishers pay an advance for a book long before they make money from it, they are incentivised to stick to narratives and characters they already know will sell. So it probably shouldn’t be surprising that we see the same tropes again and again.

Yet, the increasing diversity of children’s literature shows us that change is possible. If we can recognise that disabled kids deserve to see themselves represented in books, we must surely be able to recognise that disabled adults deserve the same. After all, disabled kids grow up. Hopefully, developments such as the new Amazon disability category and the Barbellion prize will encourage authors and publishers into the huge space disability representation could occupy. Diverse stories are important. We don’t always have to die at the end.

Sean Dilley Twice Refused Access To Tesco With Guide Dog

May 18, 2022

In the space of a week BBC News correspondent Sean Dilley was told he wasn’t allowed to take his guide dog Sammy into two London Tesco stores.

Sean was born with a congenital blindness condition and had lost all functional vision by the age of 14.

Guide Dogs’ research shows that 75% of assistance dog owners have experienced an access refusal at some point and 20% of those experiences have been in supermarkets.

Sean said: “For somebody to say that I cannot come into a shop, or that I have to leave because of a guide dog in 2022, it just feels the north side of unacceptable to me.”

Tesco provided a statement apologising for what happened.

The Vet In A Wheelchair Who Proved Her Doubters Wrong

May 18, 2022

Ever since she was a child, Dr Kiah Hann had wanted to become a vet but was told her various health conditions would prevent her from realising her goal. Now six years into the job, she explains how she proved the doubters wrong, and why her autism has proven to be a strength in her dream line of work.

“Sometimes owners are a little surprised to see a vet in a wheelchair,” says Dr Kiah Hann.

“Usually they’ll say something like: ‘Good for you!'”

The 29-year-old is a hit with animals and owners alike at Swanbridge Veterinary Hospital in North Ferriby, East Yorkshire. Using her brightly decorated wheelchair, she is supported by an assistant who occasionally helps her to handle the more lively patients.

As a child, she was diagnosed with dyspraxia and Ehlers-Danlos syndrome, both of which affect her mobility. She was later diagnosed with functional neurological disorder (FND) – the name given to symptoms in the body which appear to be caused by problems in the nervous system.

“Aged six, I wanted to be a hairdresser,” she says. “Not because I wanted to cut people’s hair but because I saw that these people appeared to be happy and have no social struggles. Hairdressers seemed, to me, to be able to chat happily to people. I couldn’t do that.

“I thought to myself if I became a hairdresser the same would magically apply to me. Aged 10 or 11, I realised that’s not how it works.

“Since I loved animals I thought I’d try to become a vet.”

Dr Hann soon found that others did not share her dream.

“A lot of people – teachers and some family members included – told me, ‘You won’t be able to do that’,” she says.

“But if anything that made me more determined to prove them wrong. Nothing was going to stop me. I had to work for it but I got there.”

Dr Hann, who lives with husband Richard near Scunthorpe, qualified from the Royal Veterinary College in London in 2016. At age 27, she was further diagnosed with autism.

“Suddenly everything made sense,” she says. “I understood why I felt as I did.”

She believes her autism has helped in her job, and says it means she wastes no times in getting to the crux of problems.

“I think patients’ owners quite like that I don’t sugar-coat,” she says. “I obviously try to deliver things sensitively but similarly I don’t beat around the bush as some vets might.”

“I am just not very good with people,” she says. “But seeing me doing my job, that doesn’t necessarily come across because I am so animated around the patients.”

“I have been accused of being a witch before because of my interaction with the patients.” says Dr Hann. “Often animals will come with all kinds of warnings but I’ll just open the carrier and see what happens. Usually within a few moments they’re on their backs wanting to be petted.”

“I absolutely love being a vet,” she continues.

“It combines my passion for animals and medicine. I really like the medicine side. I call it ‘Sherlock work’ because veterinary medicine is like solving a puzzle, which of course appeals to my autistic side.”

The National Autistic Society said many people with the condition would “see a lot of themselves in her experiences, such as not being diagnosed until adulthood.

“Not all autistic people are able to work, but many are desperate to find a job that reflects their talent and interests and, like Dr Hann, they have a huge amount to offer employers,” a spokeswoman said.

Nanette Mellor, chief executive of The Brain Charity, agreed, and said supporting neurodivergent people to achieve their potential in the workplace and creating a disability-friendly environment opens up “a wider talent pool of individuals like Dr Kiah who often possess highly desirable workplace skills, such as high intellectual ability, strong levels of concentration, detailed factual and technical knowledge, an excellent memory and attention to detail.”

Alison Kerry, head of communications at disability equality charity Scope, said: “Too often we hear from disabled people who were told they would not be able to achieve their goals because of their disability. This outdated attitude and misperception couldn’t be further from the truth.”

Dr Hann is currently off work recovering from spinal surgery but hopes to return in June. In the meantime, she hopes her story will inspire others.

“There is a whole bunch of jobs that I know I could not realistically do,” she says. “My best advice is this: find your niche and go for it.”

EHRC Statement Will Not Stop PIP Long Covid Awards

May 17, 2022

With many thanks to Benefits And Work.

 

Benefits and Work has been contacted by readers concerned that a claim this month by the Equalities and Human Rights Commission (EHRC) that Long Covid is not a disability would prevent future claims for PIP.  Fortunately this is not the case.

EHRC tweet on Long Covid

On 7 May, EHRC tweeted that:

“Discussions continue on whether ‘long covid’ symptoms constitute a disability.

“Without case law or scientific consensus, EHRC does not recommend that ‘long covid’ be treated as a disability.

“More advice on reasonable adjustments can be found – https://www.equalityhumanrights.com/en/advice-and-guidance/what-are-reasonable-adjustments

A number of our readers emailed us to say they were worried that because the EHRC says Long Covid is not a disability the DWP would be able to argue that it was no longer grounds for a PIP award.

PIP claims for Long Covid

But the criteria for being awarded PIP are not based on a claimant being disabled.  Instead, you need to show that you have  a long-term health condition and that this affects your ability to manage everyday daily living tasks and/or your mobility.

Long-term for PIP means that your condition has lasted for at least three months and is likely to last at least another nine months.

But the question of whether people with Long Covid should be automatically listed as disabled for the purposes of the Equality Act, which is what the EHRC was addressing, is a separate one to whether you are entitled to PIP for Long Covid.

But such was the dismay caused by the EHRC’s tweet that they were forced to issue another statement in which they admitted that people with Long-Covid could be considered disabled for the purposes of the Act and should be provided with reasonable adjustments in the same way as other disabled people.

Their statement, issued on 9 May, explained:

“There continues to be discussion of the various symptoms related to Covid-19 that are often referred to as ‘long Covid’ and whether they would constitute a disability under the Equality Act.

“Given that ‘long Covid’ is not among the conditions listed in the Equality Act as ones which are automatically a disability, such as cancer, HIV and multiple sclerosis, we cannot say that all cases of ‘long Covid’ will fall under the definition of disability in the Equality Act.

“This does not affect whether ‘long Covid’ might amount to a disability for any particular individual – it will do so if it has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities. This will be determined by the employment tribunal or court considering any claim of disability discrimination.

“To support workers affected by ‘long Covid’ and avoid the risk of inadvertent discrimination, we would recommend that employers continue to follow existing guidance when considering reasonable adjustments for disabled people and access to flexible working, based on the circumstances of individual cases.”

This is not the first time recently that the EHRC has been considered to be acting in opposition to the interests of disabled claimants.

Just last month we revealed that the EHRC let the DWP off the hook by going back on its promise to investigate the department’s role in the deaths of vulnerable claimants.

Instead, the DWP have merely been asked to come up with some new policies and procedures.

It continues to be the case that people with Long Covid may well be entitled to PIP.

Some of the most common symptoms of Long Covid are

  • extreme tiredness (fatigue)
  • shortness of breath
  • problems with memory and concentration (“brain fog”)
  • joint pain

These are issues that would be likely to lead to points being scored for PIP in relation to activities such as:

  • Preparing food
  • Managing therapy and monitoring a health condition
  • Washing and bathing
  • Dressing and undressing
  • Engaging with others face-to-face
  • Planning and following a journey
  • Moving around

Our PIP for Long Covid resources

You can read more about PIP for Long Covid and the fact that many thousands of people are likely to be missing out on an award.

We have also updated our short introductory video about claiming PIP for Long Covid to take account of the April changes to PIP rates.

Benefits and Work members can download a 7-page, Long Covid PIP supplement, to be used in conjunction with our Guide to PIP Claims and Reviews.

Eva Abley- BGT Comedian With CP

May 16, 2022

Will she be the next Lost Voice Guy?

Wheelchair User Says Life Has Become A Battle

May 16, 2022

Since becoming a wheelchair user, Juno Sinclair said life had become a battle.

Obstacles are constantly placed in the 22-year-old’s path, from cars parked illegally to street furniture and problems with dropped kerbs.

Juno, who has an Instagram page highlighting problems faced by wheelchair users, has also been treated as an “inanimate object” by others.

Cardiff council said it worked with assorted groups to fix problems for disabled people.

Juno recently started using a wheelchair following a diagnosis of non-epileptic seizures.

Regular fits and seizures meant the fine art student ended up housebound for five months because it was too risky to go outside.

Juno believed the wheelchair would make it easier to get out and about.

But it soon became clear it was not that simple.

What used to be a 20-minute walk to the supermarket could now take an hour because of accessibility problems.

“Every other drop kerb was not there or too steep or blocked by cars or vans,” Juno said.

“It’s an absolute battle.”

To raise awareness Juno created the Instagram page called Inaccessible Cardiff.

“It’s a local issue for me but it’s a nationwide cause, I had an overwhelming feeling that society is built against people like me,” they said.

Juno said complaints to the council had not led to improvements.

Now, they are calling for better legislation and education so people are aware of the reality of life using a wheelchair.

“Everyone is worth something from the moment you’re born and that’s forgotten,” Juno said.

“That’s why there are accessibility issues and discrimination.”

When Juno could walk, they said other people treated them as an equal.

“When I leave the house in a wheelchair people treat me like I don’t exist and it hurts,” they said.

“In supermarkets, they lean past me, move me out the way and pretend like I’m not there.

“I’m treated like an empty cage someone has left while stacking shelves.”

Access for disabled people is a legal requirement under the Equality Act 2010.

The Convention on the Rights of Persons with Disabilities is also supposed to to protect those with disabilities.

Disability Wales project officer Kat Watkins said the reality was “hit and miss”

“Cars park on pavements and on dropped kerbs, which is illegal,” she said.

“It’s like a chicane course trying to dodge in and out of street furniture such as A-boards.”

Kat has osteogenesis imperfecta – brittle bones – and ended up with several broken bones after crashing into a lamppost while checking a map.

“Days out are exhausting, I need to plan exactly where I’m going and keep focused the whole time,” she said.

It was “mentally draining” trying to dodge people and street furniture.

Kat agreed better education was needed to improve public awareness.

“It’s really baffling when someone is parked on a drop kerb or on the pavement,” she said.

“They say they support rights for disabled people but then they’ve stopped us from accessing a dropped kerb.

“It’s not just for wheelchair users. It’s for those who use sticks, guide or assistance dogs and even people with pushchairs. You’re blocking them and it’s not fair.”

Councils, she said, needed to start fining more people to send the message it was unacceptable to block access through parking inconsiderately.

Kat said if everyone worked together that would help planning and delivering public services and spaces that were accessible to all.

Cardiff council said as part of an equalities and access forum it worked with assorted organisations to resolve problems relating to access to the highway network and public transport for disabled people.

It said parking on dropped kerbs was an offence and the council took action against those committing it.

The Welsh Local Government Association said local authorities were committed to making streets as accessible as possible but was aware problems remained.

A spokesman said: “There’s been long-running tension between making high streets easier to navigate on the one hand and, on the other, supporting businesses looking to advertise on the pavement.

“We know that this can cause obstacles and create problems for people with accessibility issues. Local authorities are working with shops in town centres to improve the situation and overcome any issues.”

Deborah James, Host Of Big C Podcast, Honoured With Damehood

May 13, 2022

Podcast host Deborah James has been honoured with a damehood just days after revealing she is receiving end-of-life care for her bowel cancer.

The mother-of-two has raised more than £4m since Monday, when she launched a fund for others with cancer after announcing she had stopped treatment.

The host of the BBC’s You, Me and the Big C podcast said she was “blown away and crying” at being made a dame.

Dame Deborah, 40, is now being cared for at her parents’ home.

Damehoods and knighthoods are usually announced as part of the New Year Honours or the Queen’s Birthday Honours. But, in exceptional circumstances, some are announced at other times of the year – as happened with Captain Sir Tom Moore’s knighthood.

Downing Street confirmed the granting of the honour in a press release, which said: “The Queen has been pleased to approve that the honour of Damehood be conferred upon Deborah James.”

Prime Minister Boris Johnson said: “If ever an honour was richly deserved, this is it. Deborah has been an inspiration and her honesty, warmth and courage has been a source of strength to so many people.

“Through her tireless campaigning and by so openly sharing her experience she has not only helped in our fight against this terrible disease, she has ensured countless others with the Big C have not felt alone.”

Dame Deborah began co-presenting You, Me and the Big C alongside Lauren Mahon and BBC Radio 5 Live newsreader Rachael Bland in 2018, with the show earning praise for its frank discussion of cancer.

They spoke to celebrity guests and addressed practical matters, including hair loss, tips for dealing with finances and telling your nearest and dearest about illnesses.

Bland died at the age of 40, six months after the show launched. She had been diagnosed with breast cancer two years earlier.

Dame Deborah has been praised for her no-nonsense approach to talking about cancer online, and has shared her experiences of treatment and daily life with her social media followers since her diagnosis in 2016.

In an Instagram post on Monday, she revealed she did not know how long she had left to live after stopping treatment and moving to hospice-at-home care.

The former deputy headteacher said her liver had stopped working over the past six months and doctors had advised that more treatment was “fruitless”, adding her “body does not want to play ball”.

The podcaster told the BBC’s Graham Satchell she had gone to her parents’ home to spend her remaining time with her family because it was “where I always wanted to die”.

She explained this meant their family home in London could remain home for her children without the “medical equipment scars” in their memories.

She also announced the Bowelbabe fund, to fund research into personalised medicine for cancer patients and to support campaigns to raise awareness of bowel cancer.

The fund, named after her online social media handle, surpassed £1m in less than 24 hours – smashing her initial goal of £250,000.

Prince William and Catherine – who donated to James’ research fund – praised her “tireless efforts” in raising awareness of cancer as inspirational, and thanked her for “giving hope” to those living with the disease.

Playground Overhaul Needed So Disabled Children Can Join The Fun, Charity Says

May 13, 2022

Disabled children can find themselves excluded from their local playgrounds because of poor design and a lack of consideration of their needs.

But now disability equality charity Scope has started a campaign to help parents fighting for change.

For 12-year-old Lucy Bowen, trips to the playground can leave her disappointed and isolated, says her mum Sam.

Lucy has a rare genetic condition which means she uses a wheelchair, has severe learning disabilities and is non-verbal.

She communicates in different ways, according to her mum – and she loves to play.

Lucy’s life has been precarious, marked by blue-light trips to hospital in the middle of the night for a rare form of epilepsy: “She’s nearly died several times,” says Sam – and then there have been a series of massive procedures, including heart and hip operations.

“It means that the normal stuff like accessing play and going out to the community is all the more important.”

Making memories

When Lucy was tiny, her parents would lift her on to play equipment “or hold her on to stuff because things weren’t safe”.

But now she’s bigger, even in a newly-built accessible playground near their home in Faversham in Kent, some equipment “can only be accessed by steps which are completely out of bounds to us”.

“My daughter can only sit in her wheelchair and watch the other children run around playing up high on it. Where’s the fun in that for her?”

Lucy began to be aware of her differences from other children from the age of about six, and can become upset when she realises she’s missing out, says her mum.

“Playgrounds are so much more than swings and roundabouts. They are chances to make memories that will last forever.

“Some disabled children like mine have life-limiting conditions, there’s a risk that they won’t outlast their childhood.”

It means, says Sam, that for her family in particular, “every memory made counts”.

Research for Scope suggests almost half of families (49%) feel their local playground is not accessible.

The Opinium polling company questioned 1,000 parents of disabled children aged under 12 in England and Wales.

Of these:

  • one in seven said they could not enjoy the playground as a family because siblings could not play together
  • and one in 10 said their disabled child had hurt themselves on equipment not designed for them

It’s crucial for playgrounds to be designed with all children in mind, argues Scope.

The charity wants national governments to ring-fence money to improve and refurbish playgrounds, and argues £37m should be allocated in England and £7m in Wales.

Last year, the government’s National Disability Strategy highlighted the need to make playgrounds more inclusive as a key way of improving disabled people’s lives from their earliest years.

For Sam this was a welcome move, but she wants the government to go further.

“It doesn’t have any action points,” she says of the official document.

Local authorities need better guidance on what “accessible actually is” and they should consult with the families of disabled children about what works best, she argues.

Scope’s lead policy adviser for children and young people, Emma Vogelmann, who has herself used a wheelchair from childhood, agrees that non-inclusive playgrounds are having a huge impact on families with disabled children.

“Every child has an equal right to play, yet many disabled children can’t enjoy their local playground,” says Ms Vogelmann.

Inaccessible equipment “leaves disabled children shut out and missing childhood experiences”, she argues.

“What we’re calling for is for local authorities to co-produce plans for refurbishing playgrounds with their communities, and really make sure they engage with families with disabled children who are the experts on what they need.”

For Emma and Sam, key features to consider include:

  • wide walkways and ramps
  • ground-level roundabouts with fixings for wheelchairs
  • bucket-style swings for children who can’t support themselves
  • avoiding surfaces wheelchairs can sink into, like woodchips or sand
  • play equipment that makes calming sounds for children with autism
  • brightly-coloured equipment and tactile floor surfaces for children with visual impairments
  • better fencing

Responding to the campaign, the Welsh government said local authorities already had a duty under existing guidance “to assess for and secure sufficient play opportunities for all children”.

“We are committed to improve opportunities for all children and young people to play and, in particular, to support inclusive play,” said an official.

In a statement, the UK government said: “Every child deserves equal access to play equipment. Where a local council is responsible for a playground, they must carefully consider how to make them inclusive and accessible.”

Extra money has been allocated to councils this year to be spent on services including playgrounds, the statement continued.

‘Swinging together’

Both Sam and Emma agree accessible equipment should be available to all children, so no-one is segregated -and it needn’t cost a fortune.

Sam would like to see a bucket swing retrofitted to hang next to the regular swings in every playground, so that children like her daughter can queue up to use it with everyone else.

“Everybody can swing together, it’s not rocket science, a very easy, very affordable retrofit that can be done in a day.”

“She still enjoys playground activities and we still enjoy being able to be part of normal society, which I think is massively huge.

“I want families like ours to stop feeling hidden.”

Bank Warns Unfair UC Deductions Driving 2 Million Claimants Into Poverty

May 13, 2022

With many thanks to Benefits And Work.

 

The Lloyds Bank Foundation has issue a report this week warning that unfair deductions from universal credit are leaving more than 2 million people unable to afford basic necessities and driving them further into debt.  The charity has called for an immediate review of the way debts are collected and for historic debts to be wiped out.

In its report ‘Driver of poverty’ the charity argues that ‘UC deductions are confusing, unmanageable, and forcing people into hardship, often through no fault of their own.’

The DWP has the power to automatically deduct up to 25% of a claimants UC for debts caused by advance payments, government errors and some third party debts such as utility bills and rent.

44% of all UC claimants have money automatically deducted, with an average of £78 a month being taken, but some claimants having much larger deductions.

Claimants with deductions are almost twice as likely to have gone without food toiletries or utilities as those with no deductions.

Many deductions are a result of claimants having to take an advance on their UC to see them through the five week wait for the first payment.

But millions of new UC claimants discover that they are suddenly paying back overpayments of tax credits that occurred years earlier and which were due to an official error of which they weren’t even aware.  The Foundation says that these errors are not explained, are difficult to challenge and deductions are automatically taken without any consideration of whether the claimant can afford them.

The report quotes one claimant as saying:

“This month I have just £143 to live on, I don’t understand what the deductions are for and there is nobody I can speak to who can explain. I have to beg and borrow from friends and family who are already struggling themselves in order to get by. Deductions don’t help me find a job, and really impacts on my mental health. I walk everywhere because I can’t afford travel costs, but I’m exhausted. I’ve lost so much weight I fit into children’s clothes. I use foodbanks, but you can only use the food bank three times a year. I can use it one more time this year.”

Lloyds Bank Foundation is calling for an urgent review of the way UC deductions are managed and for the government to:

  • Convert advance payments into grants.
  • Write off historic debts that are due to government error.
  • Carry out checks made by qualified debt advisors to make sure any repayments are affordable in the same way that other bodies are obliged to.

You can download the full ‘Driver of poverty’ report from this link.

Bowelbabe Fund- Legacy Of Deborah James

May 12, 2022

So, I suppose this is the message I never wanted to get to! But it’s written with a vision that I’m truly determined to deliver.

We have tried everything, but my body simply isn’t playing ball. Even with all the innovative cancer drugs in the world or some magic new breakthrough, I realise that my rollercoaster of a ride is coming to an end very soon.

Your support in establishing the Bowelbabe Fund, continuing to spread the word, and smashing those poo taboos will forever be cherished!

——————————————————————————————————————————-

Bowelbabe Fund

My family and I, with the support of Cancer Research UK (CRUK), are establishing the Bowelbabe Fund. All money raised will be allocated, with the support of CRUK, to funding causes and projects that I really care about, such as:

– Funding clinical trials and research into personalised medicine that could result in new treatments for cancer patients, including projects in collaboration with partners such as The Institute of Cancer Research (ICR) and The Royal Marsden

– Continued support to raise awareness of cancer, such as Bowel Cancer UK’s Never Too Young campaign

——————————————————————————————————————————-

Right now for me its all about taking it a day at a time, step by step and being grateful for another sunrise.

Everybody around me has been working crazy hard these past few weeks to get everything in place. My whole family are around me and we will dance through this together, sunbathing and laughing at every possible moment!

All I ask is that next time you pop for a coffee or grab a drink with a friend, please consider donating the cost of one extra for me.

Your support in establishing the Bowelbabe Fund will help so many more people benefit, like I have, from the amazing work of these causes in the many years to come.

Please help me, my family and everyone around us give one final F*** YOU to cancer! You are all incredible, thank you for playing your part in my journey.

Deborah James (aka Bowelbabe)

Guardian Interviews Rose Ayling Ellis

May 12, 2022

Rose Ayling-Ellis, 27, joined the cast of EastEnders in 2020. In 2021, she made history as the first deaf contestant to take part in Strictly Come Dancing, going on to win the competition with her dance partner, Giovanni Pernice. The pair’s silent dance to Clean Bandit’s Symphony won must-see moment at this year’s Bafta TV awards.

You made a huge impact on Strictly in 2021 – how did you feel when you were asked to take part?
I felt really privileged, but it was also scary because they had never had anyone like me on the show – it would be a completely new experience for them and for me. But I’m so glad I said yes. I didn’t know the reaction to Symphony would be that big [Rose and Giovanni performed a Couple’s Choice dance to the Clean Bandit song, complete with a silent section]. It was really nice for the deaf community to be portrayed in a positive, joyful light. People started to see things in a different way; I had people messaging me saying they wouldn’t be upset if they had a deaf child, or if their child became deaf.

Who would play you in the TV show of your life?
I don’t know. I’m hoping that in this next generation there are more deaf actors, and that there will be someone that can play me later on. I can’t have a hearing person playing me.

What would you be doing if you weren’t an actor?
I would definitely be an artist – I love painting and collaging. I have a degree in fashion, so I’d probably also be making clothes and embellishments.

Who do you watch TV with?
I watch with my boyfriend a lot. We have similar taste in shows, but I also like watching alone so there are no disruptions.

What makes you reach for the remote (to turn the TV off)?
Shows with subtitles that are either wrong, or a bit late, or a bit early. And so many programmes don’t have any at all, so I can’t watch them.

What do you eat in front of the TV?
I love posh crisps, either cheese and onion or sweet chilli.

Who is the most famous person in your phone contacts?
Danny Dyer. He’s such a wonderful person.

Strictly Come Dancing returns later this year; EastEnders airs Monday to Thursday at 7.30pm on BBC One. For more information about the Virgin Media Bafta TV Awards, visit bafta.org

First UC Forced Migration Notices Sent To Claimants In Bolton And Medway

May 11, 2022

With many thanks to Benefits And Work.

The DWP has begun sending out the first 500 forced Migration Notices moving claimants from legacy benefits to universal credit (UC) in the Medway and Bolton areas. 

The forced move comes in defiance of a plea by charities to halt the move until proper systems are in place to safeguard vulnerable claimants.

Initially just 500 claimants will be affected as the DWP tries to work out how exactly it is going to move 2.6 million claimants onto UC by the end of 2014.  Currently, if you do not live in either the Bolton or Medway areas you are unlikely to receive a Migration Notice.  Even in those two areas, the vast majority of legacy benefits claimants will not be affected yet.  However, no details have  been given for when other areas will be brought into the programme or when numbers will increase.

The DWP has published a page of guidance for claimants who receive a forced Migration Notice. 

The new page includes details of a Universal Credit Migration Notice helpline which they say will allow you to claim by phone if you are unable to do so online.

Universal Credit Migration Notice helpline:  0800 169 0328

The line is open 8am to 6pm and calls are free.  At the moment the line should not be very busy as only 500 notices are being sent out. But how long it will be before it takes multiple attempts and hour long waits to speak to anyone remains to be seen.

Claimants are warned that they have just three months from the date on the letter to complete their claim for universal credit.

If you are unable to complete the claim in time you can contact the Universal Credit Migration Notice helpline and ask for an extension of the time limit.

However, you must do this before the deadline date on your original letter and you will have to give a good reason for needing an extension.

If you don’t make your claim to UC within the deadline, your last day of entitlement to your existing legacy benefits will be 2 weeks after the deadline.

The benefits affected by forced UC migration are:

Child Tax Credit

Housing Benefit

Income Support

income-based Jobseeker’s Allowance (JSA)

income-related Employment and Support Allowance (ESA)

Working Tax Credit

We’ll be updating the Benefits and Work ESA to UC migration guide in the members area to take account of the new information.

Meanwhile, if you have received a forced Migration Notice, we’d be very interested to hear from you.

Alarm After EHRC Says Long Covid Should Not Be Treated As Disability

May 11, 2022

People suffering from long Covid have reacted with alarm to comments by government’s equalities watchdog that the condition should not be treated as a disability.

Under the Equalities Act, anyone with a physical or mental impairment that has lasted for longer than 12 months and substantially impacted their ability to carry out normal day-to-day activities qualifies as disabled and is entitled to protection to ensure that they aren’t discriminated against in the workplace. This includes requesting that their employer makes “reasonable adjustments”, such as flexible working hours or home working, to ensure that they can continue working.

In a tweet posted on Sunday night, the Equalities and Human Rights Commission (EHRC), which was set up to promote and enforce equality and non-discrimination laws said: “Discussions continue on whether ‘long Covid’ symptoms constitute a disability. Without case law or scientific consensus, EHRC does not recommend that ‘long Covid’ be treated as a disability.”

The statement prompted immediate concern and confusion from long Covid support groups and unions.

Alice Arkwright, policy and campaigns support officer for the TUC, said: “We are concerned that this tweet may give licence to employers to not provide those reasonable adjustments, when actually, there is a very clear definition of who is disabled under the Equalities Act.”

Dr Jenny Ceolta-Smith, an employment advocate for Long Covid Support and co-founder of Occupational Therapy for Long Covid, said: “There is already disbelief of workers’ long Covid symptoms within the workplace, and this harmful announcement by the EHRC may make it much harder for workers to gain the support that they need from colleagues and line managers. It may even mean more jobs are lost.”

According to the latest data from the Office for National Statistics (ONS), an estimated 1.7 million people in the UK (2.7% of the population) were experiencing long Covid symptoms lasting longer than four weeks as of 5 March 2022. Of these, 784,000 said they’d been affected for longer than a year, and 74,000 had been experiencing symptoms for at least two years. Of those affected, 322,000 reported that their ability to undertake their day-to-day activities had been “limited a lot”.

Within this group, there will almost certainly be people who would qualify as disabled. However, “It’s not like a lottery ticket; just because you say something could be considered as a disability, it doesn’t automatically get people blue badges and benefits,” said Lesley Macniven, an HR consultant and founder of Long Covid Work, which supports long Covid sufferers with workplace issues.

“All it does is put a little bit more pressure on employers to make sure they try and help that person. People that we support want to get back to work, they want to stay in work, and be able to pay the bills and keep a roof over their head.”

Catherine Hale, founder and director of Chronic Illness Inclusion, which advocates for people with chronic illness and energy-limiting conditions, said being able to access reasonable adjustments was critical to people staying in work. “They should be able to confidently go to their employer and have those conversations,” she said.

A spokesperson for the EHRC said: “We would recommend that employers continue to follow existing guidance when considering reasonable adjustments for disabled people and access to flexible working, based on the circumstances of individual cases.

“Given that long Covid is not among the conditions listed in the Equality Act as ones which are automatically a disability, such as cancer, HIV and multiple sclerosis, we cannot say that all cases will fall under the definition of disability.

“This does not affect whether ‘long Covid’ might amount to a disability for any particular individual. This will be determined by the employment tribunal or court considering any claim of disability discrimination.”

However, Arkwright said asking someone suffering from Covid-associated fatigue to take their employer to a tribunal if they felt they’d been discriminated against was unreasonable. “The TUC is asking for the government to automatically treat long Covid as a disability so that people wouldn’t have to go through this process,” she said.

Guardian Interviews Liz Carr

May 11, 2022

For most of the past two years, Liz Carr has been shielding or, at the very least, being extremely careful. Today. for instance, we’re sitting outside a London restaurant near her home, even though it’s a grey and windswept day, and the hot chocolate she is warming her hands on is rapidly cooling. And so when she attended the Olivier theatre awards last month, it felt like a big deal, not just because she had been nominated for best supporting actress, but because it was the first time she had been indoors, among so many people – several thousand at the Royal Albert Hall – for a long time.

“Everything feels like a risk assessment,” she says. Funerals, yes. Going to the cinema, no (though she would love to). The awards, for which she was nominated for her role in The Normal Heart at the National Theatre, felt “once in a lifetime – though hopefully not. I had to be there.” It was a good job she turned up, I point out: she won. Carr laughs. “I’m glad I did. But it was frightening as well.”

Carr used her post-show interviews to call on theatres to hold separate masked and socially distanced performances for vulnerable people. She hasn’t been to the theatre since the lockdowns began.When she was performing, it was different – the cast tested daily, and it wasn’t as if she was sitting in the audience. Does it feel as though many people have been left behind in the rush to get back to “normal”?

“Sometimes you forget about it,” she says, “because we’re used to it now, and then you go, ‘Actually, I can’t go and do all the things that a lot of people take for granted.’”

Carr is still best known for her role in the TV crime drama Silent Witness, playing forensic scientist Clarissa Mullery, which she left in 2020. In The Normal Heart, Larry Kramer’s play about the HIV/Aids epidemic in New York in the 1980s, she played Emma Brookner, a doctor who, having survived polio, uses a wheelchair. The character is based on Linda Laubenstein, who was one of the first doctors to recognise the epidemic. Carr came out of shielding to play her, and it wasn’t without fear. “I worked really hard. My life was turned on its head to do this performance.”

It is, to her knowledge, the first time a disabled actor has played the role in a professional production. “The thorny issue of ‘Can other people play disabled characters?’, all of that, I think anyone can play anything, but we’re not even getting in the room to play ourselves,” she says. “That’s a big issue.” Ellen Barkin played the role on Broadway, and Julia Roberts in the 2014 film. Of Roberts, she says, “I’m a fan, but what she does is she plays the physicality, she plays the illness. So you see her breathing like she thinks someone with polio breathes, and then she forgets about it. Whereas I can only play what my body can do, and I’m playing the lived experience of it. What I had in common with Linda or Emma is: I know what it’s like to be a disabled woman, and face discrimination every single day. And I know what it’s like to have your childhood thrown into chaos by becoming ill or disabled.”

Another thing they had in common was being told from a young age not to expect a long life. “I was told as a kid I wouldn’t live to be old,” says Carr. She recently turned 50, a landmark birthday she delighted in. An old friend from her university days recently told her, “You never shut up about dying,” and certainly a lot of her work has been about death – from the victims in Silent Witness, to the horrific deaths of young men in The Normal Heart, and Assisted Suicide: The Musical, which Carr wrote and performed. The effect of being told that, she says, “inspires and motivates you. I’d better get on with things. Everything I do is urgent.” She has been grateful for that. “I’m not grateful for the anxiety that comes with worrying about my health. I’d rather not have that. But the flip side is that I have lived a life so far that has been amazing.” In person, Carr sparkles and fizzes – she speaks quickly, laughs often, and although her frame is tiny, her presence is megawatt-bright.

As a child, she never thought she could be an actor because she hadn’t seen anybody who was disabled on screen. She imagined instead that she would marry a doctor so they could look after her. She laughs. “I mean, isn’t that awful?” She grew up in Wirral, but the family moved to the US for a couple of years. “I became ill in America,” she says; when she came back, and attended her old school, she looked so different one child was convinced she was an impostor. Within a few years, she would be using a wheelchair and spent her teenage years using a manual wheelchair she couldn’t push herself, and so was pushed everywhere, with no independence.

When her school friends raised money to buy her a much-needed electric wheelchair, she appreciated the kind intention, but felt mortified. “It was my first taste of feeling different and feeling like a charity case. I guess this began my feelings of becoming political – it would have ignited that without me knowing how to do anything with that.”

She had internalised so much negativity about disability that she refused to think of herself as a disabled person. It wasn’t until she went to university in Nottingham, to study law, that this changed. “I met other disabled people and that felt like coming home. I realised, ‘Oh, I can really be myself.’” In her second year, she went on a personal development course, where she realised anything she wanted to do was possible for her, “and that’s what blew my mind. It was my lightbulb moment, and then I got involved with disability rights and the independent living movement, and the support that you need to live.” It showed her, she says, “I could have the life that I have.”

After university Carr worked for a few years as an adviser and development worker for organisations supporting disabled people. She took a theatre course and formed the sketch group Nasty Girls, and started working with Graeae, the disabled-led theatre company. She performed standup, both with the group Abnormally Funny People and in solo shows, and co-presented the podcast on the BBC’s disability website Ouch!, all with a funny and confrontational style.

In 2012, she joined Silent Witness. The programme-makers had been wanting to diversify the cast and bring in a disabled actor. Carr aced the audition but didn’t hear back for some time; she found out later that the delay “was because they were debating whether to go ‘disability lite’”. A raised eyebrow. “That was the terminology.”

She is keen to stress how much she gained from the show, but she did face battles. For a couple of years she couldn’t get an agent, despite having this high-profile job. “What that meant is that they got away with paying me buttons at the beginning. That never sits well, because if you really want to value disabled people, then realise institutionalised discrimination means that we’re at a disadvantage – we can’t get agents, we’re not getting the roles – so give us a help up. Once I started doing well, and the audience loved me, there was [no promotional material] I wasn’t on the front of. I’m still usually the person, the image, wheeled out when they’re talking about diversity and how well they’ve done.”

Clarissa was a brilliant character – she shares Carr’s sharpness and warmth – but Carr says she had to fight for decent storylines: anything more, she says, than “a snarky line to Jack [Hodgson, another forensic scientist, played by David Caves] and a bit of exposition”. One storyline she was given ended up being dropped, and she had to announce she was leaving before she was promised more. She was ready – she had developed her musical, “so I was happy. I was making my own work, I was doing something I wanted, that I had control over.”

She was persuaded back to Silent Witness, and Clarissa was given a husband; she had been the only character without a love interest. “They wanted her to be dating and do that whole ‘Will he love me? Can disabled people have sex?’ and I didn’t want that.” Clarissa’s husband was initially written as an unattractive man in a sexless, unhappy marriage – the expectations of her character were as low as they had been for Carr. She has been in a civil partnership with Jo Church, a joiner, since 2010, she says. “When I got together with my wife, I was on the comedy circuit at the time, and I remember particularly the male comics being like, ‘You’re punching above your weight.’” After she complained to the writers, her on-screen husband was rewritten as suitably nerdy and lovable.

Finding the right actor, however, was painful. Of those who auditioned with Carr, to test the chemistry between them, some wouldn’t go near her. “The body language on a couple of them was … the casting people and the director were shocked.” Daniel Weyman, who got the role, became a good friend, “and we worked really hard to give the couple authenticity. Again, trust me and you’ll get much better stories.” She gives a frustrated smile, and adds: “But I shouldn’t have to be across everything.”

Carr’s visibility, as a rare disabled woman on primetime TV, has made her a target of horrific online abuse – though not from the fans of her shows (me included), who pretty much all love her. “When it was announced that I was going to be in Good Omens [the Neil Gaiman TV series], I’ve never had so much love.” It was the same with The Witcher, the Netflix fantasy series, which she joined in its second season. “On the whole, I do fine. But when it hits, it hits, and it’s not fun. My wife reads it and then she goes: ‘Don’t read that.’” Even recently, talking about extended mask-wearing in theatres, she has seen abhorrent online comments about her appearance. “I know what I look like; I also know why I look like I do. And I also think I’m beautiful.” How does she cope with it? “I talk about it, rather than keeping it quiet. My wife is very good for balance. She pointed out the amount of love that I had before winning the Olivier, and then winning, including so much from other disabled people.” Being an activist helps tune out any negativity.

She has campaigned for years for disability rights, and against discrimination, benefit cuts and assisted suicide. Her musical was a dark comic response to the 2015 assisted dying debate in parliament, where MPs voted against a change in the law that would have allowed doctors to assist terminally ill people to end their lives; many disabled people feared it would lead to unintended consequences for them. “It sort of broke me,” she says. “It’s a hard thing to have strong views on. You are talking about your own value, or the value of people that you hold dear.” It made her step back for a bit, but she is still involved. The issue is ongoing, with recent House of Lords debates, and she wants to put her secular view across because “opposition is marginalised to being religious in foundation. There’s a whole group of people who have great concerns about it, and they’re the ones that often sit on the edge of life and death, because they’re within the healthcare system a lot or they have chronic conditions.” Simply put, she says, “when somebody wants to end their life, we do all we can to stop that. When somebody is ill or disabled and wants to end their life, we understand it, and if anything we support it, and I think we should be really careful and interrogate why that is.”

Carr is trying to get a documentary made that she wants to call Better Off Dead. “People say that to you,” she says, with an incredulous laugh. Some people, she says, “will go, ‘You’re remarkable because if I was like you, I’d rather be dead,’ in some casual way. Wow, that’s the value of my life? That flippant comment becomes dangerous when it becomes culturally acceptable to think, because then that does impact on policy. When you start valuing people’s lives as less than, you can see why that group of people become more disposable.”

This became shockingly visible during the pandemic. “In the really early days, there was some quite scary talk around the rationing of resources, and who to treat. It meant I was really frightened that if I was in a position of needing healthcare, what kind of decisions are going to be made? Seeing things like blanket do not resuscitate orders sent out to certain groups, particularly people with learning disabilities.”

Over the last few years, she has seen friends struggle; disabled people have been disproportionately affected by Conservative cuts. She warns against complacency. “Because you see a few more disabled people on telly, or a deaf guy winning an Oscar [Troy Kotsur for Coda], or me winning this – that’s a sort of a sleight of hand that things are better. And they’re not.”

Still, Carr’s Olivier is not insignificant. “It really mattered to me, and other disabled people and my community,” she says. Her speech was bound to be political. She even told her wife beforehand to kiss her if she won, to increase lesbian visibility.

Aside from a wry swipe at the lack of accessibility at awards ceremonies, she used her speech to call on theatre producers to cast more disabled actors. It shouldn’t, she says now, “feel like a risk. I said to casting people at the National – they know I’m hugely ambitious – ‘So now I need to be cast in something where it’s not a wheelchair-user.’” She quickly adds, “Don’t get me wrong: this was a dream role. I couldn’t have asked for anything better.” But Carr has always fought for more, and she seems unstoppable.

Deaf Awareness Week: BBC Weather Presenter’s Sign Language Challenge

May 10, 2022

As part of Deaf Awareness Week, BBC Yorkshire weather presenter Keeley Donovan wanted to learn how to sign one of her forecasts.

Keeley visited students at Doncaster Deaf College to learn the appropriate symbols required, admitting that her rehearsal in front of the pupils was “more nerve-wracking than being on television”.

Motor Neurone Disease: Man Scales Snowdon In Wheelchair

May 9, 2022

A man with motor neurone disease who has always wanted to scale Snowdon is using his off-road wheelchair to do so.

The challenge has been made harder as Ian Flatt lost the use of his legs after a fall five weeks ago.

The 56-year-old has undertaken the venture to raise funds for the Leeds Hospitals Charity.

He has already raised £22,000 doing two 100-mile (160km) treks.

Mr Flatt said: “I’ve always wanted to climb Snowdon. We’ve got lifting tackle, we’ve got straps to pull and we have got all these people.

“So between us we’ll work it out and we’ll get there.”

Rose Ayling-Ellis To Sign CBeebies Bedtime Story

May 6, 2022

Actress and Strictly Come Dancing champion Rose Ayling-Ellis is to become the first celebrity to sign a CBeebies bedtime story this Sunday.

Ayling-Ellis, 27, who has been deaf since birth, will tell the tale Can Bears Ski? in British Sign Language (BSL), to mark Deaf Awareness Week.

The story of a young bear draws on the author’s own experience to show how it feels to be deaf in a hearing world.

Ayling-Ellis said she hoped it would inspire children to learn to sign.

Can Bears Ski? was written by Raymond Antrobus and illustrated by Polly Dunbar, and follows the journey of a son and father as they discover and manage deafness.

It will be the first ever BSL-signed story on CBeebies and it will see Ayling-Ellis only speaking twice throughout the entire programme. Once at the beginning to introduce the story, and at the end to wish the audience goodnight. The story will also have subtitles.

Ayling-Ellis said: “I am super excited to read my first CBeebies bedtime story in British Sign Language and it’s even more wonderful to share a story written by a deaf writer.

“I hope deaf children enjoy the story and it inspires hearing children to want to learn BSL more.”

Ayling-Ellis found fame starring as Frankie Lewis in BBC soap EastEnders and went on to become the first deaf contestant to win Strictly.

She was also nominated for the Must See Moment of the Year at the 2022 Bafta Awards for her Couple’s Choice dance routine with partner Giovanni Pernice, which included a section where the pair danced without music to honour of the deaf community.

The actress has actively campaigned for BSL to be recognised as an official language and to be given legal status in the UK.

Her story will air on Sunday to mark the end of Deaf Awareness Week, and will be the first of two stories she has recorded for CBeebies.

Other readers of the CBeebies Bedtime Story have included Dolly Parton, Tom Hardy and Ed Sheeran – who read a story about a boy with a stutter, as he did as a child.

In 2018, Catastrophe actor Rob Delaney became the first person to tell a CBeebies Bedtime Story in Makaton – which was another first for the programme.

The Duchess of Cambridge became the first royal to present the show earlier this year.

CBeebies Bedtime Stories airs daily at 18:50, with episodes signed by a BSL interpreter shown every Saturday and Sunday.

Disabled Children ‘Dumped’ In Ukrainian Institutions

May 6, 2022

There are claims that thousands of disabled Ukrainian children have been forgotten and abandoned in institutions that can’t look after them.

The human rights organisation, Disability Rights International, has carried out an investigation and found children with severe disabilities tied to beds in overrun children’s homes unable to cope.

The BBC has been given exclusive access to an institution in western Ukraine, where disabled children from the east have been left by their carers who fled to neighbouring countries.

Rose And Giovanni’s Silent Dance Up For BAFTA

May 6, 2022

Strictly Come Dancing stars Rose Ayling-Ellis and Giovanni Pernice have been nominated for the Must-See Moment Bafta, a category voted for by the public.

During their ballroom dance to Symphony, the music switched off for several seconds as the pair danced in silence.

The EastEnders actor became the show’s first deaf contestant and brought attitudes towards disability into the spotlight.

As British Sign Language (BSL) is set to be legally recognised as a language, Rose and Giovanni visited Frank Barnes School for Deaf Children in north London to celebrate their achievements.

You can tune in to watch the 2022 Virgin Media Bafta TV Awards on Sunday 8 May at 6pm on BBC One and BBC iPlayer.

Eurovision: Australia’s Sheldon Riley’s Song Details His Autistic Experience

May 6, 2022

Australian singer Sheldon Riley has described how being autistic has informed his song for this year’s Eurovision Song Contest in Turin.

Best known for appearing on The X Factor: Australia and America’s Got Talent, Sheldon will perform Not The Same in the second semi-final on Thursday 12 May.

The Grand Final is on Saturday 14 May at 2000BST/1900GMT.

Wales Council Elections: Blind Voters Not Supported

May 5, 2022

Blind and partially sighted people need to be better supported to enable them to vote in elections independently, campaigners have said.

Dan Thomas, from Cardiff, said he had never been able to vote on his own and it felt as if blind people “don’t matter”.

“It’s something that I should be able to do myself, that I can’t, and nobody seems to have any real interest in changing,” he said.

“There’s no excuses not be doing it other than laziness.”

The Welsh government said it was working with expert organisations to address the problems.

Being Mum With MND

May 4, 2022

Lucy Lintott always dreamed of having children but when she was diagnosed with Motor Neurone Disease (MND) at just 19 she was told she would never be able to have a family.

Most people with MND don’t survive beyond the first three years of diagnosis – but eight years later Lucy has two young children and plans to marry her partner Tommy later this month.

She is thought to be only the second person in the world with MND to give birth twice.

MND is a rapidly progressing terminal disease that stops the messages from the brain reaching the muscles.

The disease gradually makes gripping, walking, talking and swallowing extremely difficult – and eventually impossible.

Lucy, who grew up in the town of Garmouth, close to the Moray coast in north-east Scotland, was diagnosed at the end of 2013.

She was the youngest person in Scotland with the terminal disease, which usually affects people over 40.

Three years later, aged 22, Lucy told the BBC it was like being “slowly paralysed” and she was worried that her “hilarious personality” would slip away.

The illness meant she was using a wheelchair more as she could no longer walk unaided, and her speech was affected.

Lucy took action to record her voice so it could be used for a simulation if she lost the power of speech completely and she set about raising funds for research into the condition.

But she tells the new BBC documentary Being Mum with MND she was terrified about the future.

Although she required professional carers to help her with most tasks, Lucy was determined to move out of her parents’ home and into her own flat in the nearby town of Elgin.

“That really changed a lot of things,” she says. “I started to get independent so I could have a boy round and mum would not embarrass me.”

In 2018, Lucy reconnected with old school friend Tommy Smith. He was in the year below her at school but they were in the same modern studies class when she was in sixth year.

Tommy says he was very shy but Lucy was “loud as hell” and her laugh could be heard from three classrooms away.

He could not resist her beaming smile and massive eyes. Lucy was attracted to his tight shirts and trousers.

The pair became a couple.

“I did not have to protect myself,” Lucy says. “He knew what he was getting into. He’s had to deal with people pointing out I have MND.”

Tommy proposed in 2019 and in September that year the pair announced that Lucy was pregnant.

Her dad Robert says there were concerns for Lucy’s wellbeing, as well as the child. The risk for Lucy was higher because they did not know how her muscles would react.

But she said: “The rewards of being parents outweigh the risks.”

On 13 February 2020, Lucy gave birth to a baby son, who they call LJ in public.

Tommy says she took to be being a mother like a duck to water, although she has to work with a team of carers to look after LJ.

“Working with carers is very much me explaining and describing how I like things done,” Lucy says.

“It’s a very give-and-take relationship. Basically they are like my arms.”

Tommy says: “Even though she is using someone else to do it, it is her giving the instructions

“There are a lot of people who did write her off. A lot of people said you can’t do this. Lucy is doing a fantastic job. She does a way better job than I do.”

Soon after LJ was born the Covid pandemic hit. Lucy had to shield and the couple had to postpone their wedding.

At the height of the pandemic she had to move back to her parents’ home in order to protect her health and still receive the care she needed.

But in May last year, Lucy and Tommy announced they were expecting a daughter.

Lucy’s mum Lydia said her daughter had always wanted to have children, and that it had been “just lovely” when LJ came along.

“But when they announced they were having another, we were like, ‘Oh my God, what have you done’?” said Lydia.

The couple’s daughter, who they are calling AR, was born just after Christmas.

“The birth was really hard and scary but we are both here safe and that’s the main thing,” Lucy says.

“She will definitely be the last one. I genuinely don’t think my body would handle it again.”

Lucy says she relies heavily on carers to help with her children, but she is the one constant in their lives and they know she is their mother.

“I’m proud that motherhood has come pretty easily to me even though I am disabled.” she says.

“If could do it all myself physically I would.

“I don’t enjoy watching other people with my kid.”

Lucy plans to finally marry Tommy this month and then wants to spend as much time as possible with her family.

“I’m not materialistic,” she says. “I am more about family and spending time with my loved ones because I don’t know how long I have got left.

“I’m very grateful. I know I am one of the very few people with MND who could have a kid, let alone two. I don’t take that for granted.”

Being Mum With MND is on BBC Scotland at 22:00 on Tuesday 3 May.

500,000 ESA Claimants To Be Worse Off Under UC As Managed Migration Begins

May 4, 2022

With many thanks to Benefits And Work.

 

As the forced (managed) migration from legacy benefits to universal credit (UC) begins this month, the DWP have finally released figures showing how many claimants will be worse off under UC.  Half a million ESA claimants are expected to lose out.  We’re asking Benefits and Work readers what questions and concerns they have about the move.

The forced migration of legacy benefits claimants starts on 9 May.  Initially this will be just 500 claimants, as the DWP is still very obviously unclear about how they are going to manage to move 2.6 million claimants by their deadline of  the end of 2014.

Just 38 claimants were moved onto UC during a pilot in Harrogate that was abandoned due to the pandemic.

Because that is the only experience the DWP have of ‘managed migration’ it is not surprising that they say that:

 “We still need to finalise our approach, particularly for managed migration, and will undertake further work in some parts of the country, learning what support different claimants are likely to need in order to make a successful claim for UC.”

Figures in the Completing the move to universal credit report released this month show that 1.2 million ESA claimants will be making the move.

Of these, 600,000 are expected to be better off under UC.  100,000 will see no change. 

But the DWP predict that 500,000 current ESA claimants will be worse off.

Of these, 400,000 ESA claimants will receive transitional protection, which should mean they do not see any reduction in their benefits to begin with.  However, the value of this protection will be eroded every year because, with the exception of the childcare element, any annual increase in UC will be deducted from the transitional protection.

So migrated claimants will begin to be worse off within a year or less of making the move.

Some changes of circumstances will lead to the withdrawal of the transitional protection.

Amongst the people the DWP expect to be better off are ESA claimants who are in the support group but who do not get the severe disability payment.

Those who the DWP expect to be worse off include households who get ESA and receive the severe disability premium and the enhanced disability premium.

Benefits and Work already produces a detailed guide to the work capability assessment for UC to help claimants who qualify to move into the LCW and LCWRA groups.

We also have a guide to migration from ESA to UC.

Although we obviously can’t do anything about lost income, we are working on additional resources to help members with the transfer process. We’d really like to hear from you about what your concerns are and what questions you’d like answering.

Please leave your questions and suggestions in the comments section below or complete a Feedback form.

EHRC Lets The DWP Off The Hook Over Claimant Deaths

May 3, 2022

With many thanks to Benefits And Work.

 

The Equality and Human Rights Commission (EHRC) has gone back on its promise to investigate the role of the DWP in the deaths of vulnerable claimants, effectively letting the DWP entirely off the hook.  Instead it is now only asking the DWP to come up with some new policies in relation to claimants with mental health issues and learning difficulties.

As far back as 2019 the EHRC said that it would mount an investigation into claimant deaths.  But it then used the pandemic as an excuse not to begin work.

Now, however, the Commission has said only that it intends to enter into a Section 23 agreement under the Equality Act 2006 which will oblige the DWP “to commit them to an action plan to meet the needs of customers with mental health impairments and learning disabilities.”

The EHRC claim that:

“This legally-binding action plan is focused on resolving issues for DWP customers, and offers a fast, effective means of redress, and helps to avoid lengthy investigations.”

In a statement unlikely to inspire confidence in disabled claimants, Chief Executive of the Equality and Human Rights Commission, Marcial Boo, said:

“The EHRC is committed to stamping out discrimination against all disabled people, including those with mental health conditions and learning disabilities whose needs can be overlooked.

“Government bodies often deliver essential services to vulnerable people. They must meet high standards and make reasonable adjustments for those who need them. The EHRC will hold them to account if they do not.

“This agreement with DWP will build on the improvements already taking place for disabled benefits claimants. We are pleased that officials are working cooperatively with us to address our concerns, and we expect the binding legal agreement to be in place shortly. We will monitor its delivery.”

Sadly, the EHRC does not give any details of the “improvements already taking place for disabled benefits claimants”.  Most claimants would probably argue that, unless you live in Scotland, they are completely non-existent.

The reality is that the DWP is vastly bigger and better funded than the EHRC.  It will run rings round the Commission in the drawing up of an agreement which is likely to be little more than a list non-measurable and non-actionable good intentions.

The details of the action plan will not be available until the summer of 2022, at the earliest.

You can read more on the EHRC website.

Energy Prices: Fears And Cutbacks As Hike Hits Disabled Families

May 3, 2022

Families with disabled children who rely on specialist medical equipment say they are facing impossible choices as energy bills in the UK soar.

Some 5,500 families took part in a survey by leading disability charity Contact, shared with the BBC, about the impact of increasing energy costs.

Almost 2,000 families said they feared their child’s condition would get worse as a result of rising prices.

The government said support was available to help with fuel bills.

About 600 respondents to the survey, which has been shared exclusively with the BBC’s new podcast Access All, said they would have to stop or cut back on using specialist equipment and aids.

Many more said they would go without heating, food or new clothing.

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Listen to the new podcast, BBC Access All: ‘I used a hairdryer to warm my daughter’s feet’

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‘We’re already living on the breadline’

Single mum Adele Ingham lives with her 13-year-old daughter Molly, in Greater Manchester. Molly has Batten Disease – an incurable illness that affects the nervous system – and relies on various electronic equipment in her daily life.

“She was diagnosed at 10,” Adele says. “At that point she could do most things other children could do. Now she’s fully hoisted, she lost her eyesight, she’s gastrostomy fed.”

Molly’s basic daily needs all add extra costs to the small family’s energy bills, and as a full-time carer for her daughter, Adele says she struggles to keep on top of them.

“The wheelchair needs to be charged, I’ve got two hoists in the house that constantly have to be on charge, a through-floor lift that uses extra electricity, suction machines because of her saliva. We’ve got several washing loads every single day because she goes through things like dribble bibs frequently,” Adele explains.

Contact’s survey found, on average, respondents had energy bills of £1,909 last year – £600 more than the average UK household. Adele already spends more than £2,000 a year on gas and electricity.

But energy prices are rising quickly. And earlier this month the energy price cap – the maximum price suppliers in England, Wales and Scotland can charge households – was increased, meaning most bills are set to rise further.

“We’re already living on the breadline, and Molly’s electrical equipment is needed,” Adele says. She is already making cutbacks in an effort to reduce her bills, including stopping using the tumble dryer and turning off the heating when Molly is in bed.

But while she has tried to make changes that don’t affect Molly, she has not been able to shield her daughter from all of them. “There’s times where I’ve had to think ‘OK, I won’t go out tomorrow. I won’t charge the wheelchair,'” she says.

Elsewhere in the country, Kerry Richmond says she relies on a “phenomenal” amount of equipment for her 12-year-old son Oscar, including a wheelchair, feeding pump and epilepsy monitor.

Oscar’s rare genetic condition means he is unable to regulate his body temperature, but Kerry says the family have turned down the heating in all of the bedrooms apart from his, and now use only a “puddle” of water when he has a bath.

“We’re really not going to get a good idea of how bad things are going to get until we start entering winter,” she says. “I cannot be without electricity – these are things he needs to survive.”

Families with disabled children who do not rely on specialist equipment say they are also struggling.

Nicola Colenso’s daughter Yasmin has the neurological condition Sturge-Weber syndrome and has been doubly incontinent for most of her life.

“The biggest cost for us where daily electricity is concerned is the fact that every day we have to wash her bedding,” she says.

The family’s energy bills have always been expensive but it’s “going through the roof”, she adds.

Contact found that more than 40% of the families who spoke to them had already gone without heating at some point during the winter due to the costs of their energy bills, and more said they would have to do this now the prices are rising.

Calls for more support

Dozens of the UK’s leading disability charities have written to Energy Minister Greg Hands and Chancellor Rishi Sunak calling for more support. “Disabled children and adults need their benefits uprated in line with inflation,” the letter says.

Among other requests, it calls on the government to make a £200 energy rebate, announced in February, a non-repayable grant for disabled people.

A spokesperson for the government said it was “committed to making the UK more inclusive and accessible for disabled people”.

They pointed to general energy initiatives such as the Cold Weather Payment and Warm Home Discount, adding that this was “on top of extra financial support available to those with disabilities, or those who care for them”.

But parents like Adele say the support available isn’t enough for children like Molly, who she says are living on “borrowed time”.

“She should be living her life to the full at the moment but unfortunately we don’t have enough money to be going out because all the spare money we do have has to be kept in the account for fuel bills.”

You can listen to the podcast and find information and support at the Access All page.

Everest: Jamie McAnsh To Attempt Climb On Crutches

April 29, 2022

A man who woke up paralysed more than eight years ago is attempting to reach Everest base camp on crutches.

Jamie McAnsh, from Cwmbran, Torfaen, has complex regional pain syndrome (CRPS) which causes persistent severe and debilitating pain.

He said it had been his dream to climb Everest since he was a child and his trip, originally planned for 2020, has been twice delayed by Covid.

He will leave on Tuesday with a small team to make the ascent.

Jamie told BBC Radio Wales Breakfast he went to bed “as normal” on 6 January 2014, but woke up the next morning paralysed from the waist down after rupturing his spine in his sleep.

It took another 13 months for Jamie to be diagnosed with CRPS, which has no cure but often gradually improves over time.

Jamie said he was in a “dark place” after his diagnosis, but has been “very lucky” with the support around him to enable to him to take on the challenge of reaching Everest base camp, which is at an altitude of 5,364m (17,600ft).

He said: “Everest has been a dream since I was seven years old. I often say it was shattered in 2014 when I woke up paralysed and I remember thinking to myself ‘why didn’t I do it earlier, why did I not just go and do it’.

“When I was going through physio they said I needed a goal, I needed something to work towards and I said ‘well I’ve got a goal, I want to climb Everest’ and I remember my physio saying ‘Jamie, I tell you what, let’s get you standing first’.”

Jamie said he wanted to use to climb to raise awareness about CRPS.

“If you catch it early enough you can actually turn it around, you can revert it,” he said.

“But unfortunately it is so misunderstood that a lot of people go past the diagnosis stage before anyone notices or understands what they’ve got, so they’ve got to pass that gate, that window if you like.”

Jamie’s trip was originally scheduled for May 2020, but was postponed by the first Covid lockdown. A second attempt in 2021 was foiled at the last minute when Nepal was moved to the red list.

Jamie estimates it will take about 10 days to reach base camp with his specially adapted crutches, with another four days to come back down.

Young Ed Sheeran Fan’s Tailor-Made Matching Pink Suit

April 29, 2022

A 15-year-old boy was “shaking with excitement” to have been made an exact replica of a suit worn by his favourite musician for his birthday.

Leo, 15, fell in love with the hot pink suit Ed Sheeran wore in his Bad Habits music video.

The outfit was created by Swindon-based charity Dressability, which makes and alters clothes for people with disabilities and mobility issues.

Leo, who has Down’s Syndrome, also received a video message from Sheeran.

“He’s watched it six times already,” said his mother, Clair, the afternoon the video arrived.

In the message, Sheeran said he wanted to send a video to say “thank you for being a fan”.

Leo’s mother said: “He’s wanted this outfit since he watched the Bad Habits video.

“I looked online myself to find a pink suit that was similar and it was too expensive.”

Clair contacted Dressability, where seamstress Edie Fox fitted Leo for the suit.

“Oh my god he was so excited wasn’t he?” said Ms Fox.

‘Literally shaking’

“He was literally shaking. Mum kept saying, ‘calm down, calm down, Leo’.

“He couldn’t actually believe it that he was finally going to get one.”

“They are amazing, they’ve done a stunning job,” added Clair.

Dressability manager Sharon Tombs said the charity aimed to bring people independence to dress themselves.

“And that can be replacing zips with Velcro or the newest thing now is magnets.”

It also has a project creating “dream” costumes for children with disabilities.

“Something that money can’t buy and that’s made to measure,” said Ms Tombs.

Self-confidence and dignity

She said children with disabilities “often have shorter arms or shorter legs”, and can struggle to find a costume that fits.

“It’s amazing to be able to make people’s lives easier and to give people the self-confidence and dignity to be able to wear something that genuinely fits them.”

The charity relies heavily on volunteers, such as Anne Tuffin, who said she “really enjoyed” creating Leo’s suit.

“It’s rewarding getting the pictures back when you see them wearing the outfits,” Ms Tuffin said.

Ms Fox added: “The first time I came there was a young lady of 15 who wanted to be Belle from Beauty and the Beast and we made her this big gold dress.

“We have to be careful the gowns, the dresses don’t catch in their wheels, that it’s easy for them to get dressed in.”

She said when Leo’s suit was completed he didn’t want to change.

“He said ‘I’m going to school in it please’.”

“It’s a real joy seeing their faces when they have something that they dreamed of,” she added.

‘Honoka’ Challenges Assumptions About The Lives Of Those With Severe Disabilities

April 28, 2022

A documentary that follows a couple looking after their severely disabled daughter who was declared “near” to being brain dead at birth poses important questions to audiences about how they understand life and the meaning of existence.

The parents of Honoka Nishimura, now 14, were told by doctors that she would never exhibit consciousness when she was born in 2007. Told she would continue to require medical attention around the clock, the couple brought her back to their home in Saitama when she was 9 months old.

“Honoka” follows the girl, age 3, and her parents over three years. Like any parents, the Nishimuras shower her with affection, taking her on outings and reading picture books in her presence, while her mother, Risa, 45, also takes charge of her medical care.

Under a 2010 law that allowed organ transplants upon recognition of brain death from children under 15, a brain death diagnosis is made if a series of criteria are met: an individual is in a coma so deep that they do not feel pain; their brainstem reflexes have disappeared, such as not coughing when the throat is stimulated; their brain waves are flat; and they are unable to breathe on their own.

But Honoka was never officially diagnosed as brain dead, having been born before the law took effect.

Director Yugo Kunitomo, 38, says he began to think about the issue of brain death before he started filming the family, at a time when debate was raging in Japan over the revised law.

“Although brain death is often associated with death, the body of a brain-dead person is warm and their nails and hair grow,” he says. “I was asking myself whether such a state can really be defined as being dead.”

What also motivated him was footage of his mother, now deceased, who used to teach at a school for children with disabilities. One of her students appeared to be in a similar condition to Honoka.

“When I saw the footage, I was shocked that he was actually living in such a state, but my mother was treating him with affection,” Kunitomo recalls, adding that he had even wondered for a moment whether there was a point to the child being alive.

“When such a thought occurred to me, though, I felt disgusted with myself,” he says. “I wanted to know what my mother thought about disability and life.”

In the film, Honoka’s father, Hidekatsu, 45, confesses his bewilderment when learning about his daughter’s condition. Risa told the director that she wanted to confirm to herself through the camera lens that what she was doing every day really mattered.

Risa’s hands appear rough due to the medical care she provides daily to Honoka, with the assistance of helpers, including inspecting her respirator, feeding her through a tube, massaging her to help her urinate, removing phlegm, and frequently changing her position to prevent bedsores.

Much of the film is filled with the family’s joy in raising their daughter, however, with scenes featuring a trip to a zoo and birthday celebrations. Honoka’s parents often speak to her and ask her what clothing she wants to wear.

The film presents Risa as “communicating” with Honoka, interpreting nonverbal messages from the expressions and sounds her daughter emits through the respirator. One scene shows Honoka wearing toy cat ears equipped with sensors that are supposed to move when they detect brain waves. In the scene, the ears move.

“I have felt Honoka’s temperature, her life, and her power to be alive,” Kunitomo says. “Through creating this film, I discovered the great existence of life, seeing that Honoka is certainly alive at such a particular time and age.”

After finishing filming the family in 2014, it took seven years for the production team to edit the movie, which omits narration and captures the family’s daily life in an unobtrusive way. The director’s aim was to try to let audiences connect with the family through him and his experiences of being around Honoka.

Before the film’s release in January this year, Risa was concerned about how audiences would perceive the family. They had already been subjected to criticism, such as accusations that the parents are “keeping Honoka alive only to satisfy their ego,” according to Kunitomo.

Her anxiety only grew after a massacre in 2016 at a care home for people with disabilities in Sagamihara, Kanagawa Prefecture, and the way she believes Japanese society “seemed to distance itself from the incident,” says Kunitomo.

But after seeing some of the positive reactions from audiences via social media and other news sources, Risa told the director her family felt more accepted, allowing her to rebuild trust in society.

The film’s distributor is considering showing the movie online after screenings at theaters in other parts of Japan, including Niigata and Saitama prefectures.

A teacher visits Honoka, now a junior high student at a special needs school, at home three days a week. The activities include showing her video footage.

According to Kunitomo, Honoka appears to show a reaction to footage concerning environmental issues. When such images are shown, the alarm of her saturation monitor, a device used to measure oxygen saturation in the blood, often sounds.

She is also connected online with other students and goes on field trips with her parents. Her physical condition stabilized as she grew, although she used to get sick every year, he says.

Her parents say they are now leading a spiritually fulfilling life after building new relationships with people related to Honoka’s school — enabling them to have associations in society that had been limited largely to relatives and those who support the family.

“This film poses a question,” Kunitomo says. “There may be people who are shocked by watching it. But at the same time, children like Honoka are actually living in the same world.”

Kunitomo says he is not seeking answers by posing the question of how to view and treat such children but believes it is critical that audiences ask themselves questions about the life of severely disabled people.

“I want audiences to cherish the emotional turmoil when seeing this film,” he says.

Blue Badge Misery For PIP Review Backlog Claimants

April 28, 2022

With many thanks to Benefits And Work.

 

Claimants who should be automatically entitled to a new Blue Badge are being left in misery because of the DWP’s  backlog of PIP reviews..

Benefits and Work is hearing from members who are facing a choice between paying repeated fees for short term renewals of their Blue Badge or having to complete a form and provide evidence which one member described as being ‘worse than applying for PIP’ and which does not guarantee they will get the badge they should be automatically entitled to.

The problem is being caused by the enormous backlog of PIP reviews, with the DWP now using software which extends PIP awards repeatedly when they are close to ending, if a review has still not been completed.

Automatic Blue Badge

Some claimants automatically qualify for a Blue Badge.

This includes people who are awarded the PIP mobility component because:

  • they can’t stand and move more than 50 metres and are awarded 8 points or more for ‘moving around’, or
  • because they cannot undertake any journey because it would cause overwhelming psychological distress, descriptor E under ‘Planning and following journeys’.

Claimants who don’t automatically qualify have to provide evidence to show their eligibility for a Blue Badge.

The problem claimants who should qualify automatically are encountering is that many local authorities require proof of the end date of a claimant’s PIP award before they will issue a Blue Badge.

If PIP is being awarded on a repeated short-term basis then claimants may either not have proof of the end date of their award or they will only have proof that it has been awarded for a few months or less.

Without any proof of an end date, no automatic Blue Badge will be given. 

With proof only that an award will last say three months a claimant may have to pay £10 for each renewal and may have to wait a large part of that time for the new badge to be issued.

Members’ Blue Badge problems

We have received feedback and forum posts about this issue from members and it is clearly one that is of growing concern.

One member told us:

“I sent my renewal form back in May 2021 and the DWP have put me in a queue for an assessment even though the only change to my chronic health issues has been the introduction of long covid. 

My blue badge expires at the end of June 2022 when my award runs out and my local authority will not give me a badge unless the DWP supply me with an end date award.

I have spoken to DWP who said that they cannot help me. The agent asked his manager if he could speed up my assessment and he refused. I have been told that as I put covid issues on my form that I have been placed in a different format for assessment.

I told the agent that I filled the form in in May 2021 and that I am almost free from the effects of covid. I have also been informed that I will receive PIP on a rolling month basis until an assessment is carried out. I have received DLA now PIP since 1996 and I will not get any better.

Have I any other way to address this issue as I will soon not have any access to shops etc if I do not have a blue badge.  My local authority have not been much help as they state that they require an end date reward from the DWP who will not supply me with a letter of explanation.”

Another member told us that when faced with the same problem they filled out an application form for a Blue Badge.

“I was given regular repeated 3 month extension letters of award by dwp ( if I chased up) but the problem was you then had send for a blue badge for only 3 months at a time and pay £10 each time, and it said it took nearly that to apply.

I asked the council what to do, so they said fill out the form as if you don’t have PIP (so without passporting), and send in the 3 month letter and explanation letter. This was Gloucestershire council. They processed it and sent me a 3 year one, without assessment and in about a fortnight.”

But one member decided to manage without a Blue Badge for the time being rather than attempt yet another complex and stressful period of form filling:

“I then went on line to apply for my blue badge via local government (council) website.

I filled out the form best I could, and received an email with the councils blue badge award criteria. Well its asking for tons and tons of evidence, etc. Worse than applying for pip if you ask me.

So I’m going not send off evidence, I’m going to let the application expire, and they will reject my blue badge application.

Then hopefully when my pip has been decided etc, I will then reapply for blue badge under the PIP criteria.  The councils criteria seemed more stressful in regards to obtaining evidence, than PIP itself. and lots of the criteria never applied to me. like cancer, oncologist, do you have a Macmillan supporter etc.”

For some members, a short-term award was worth the cost:

“I encountered exactly the same problem last year.  I took photos of my extension award notice plus a photo of my ugly mug and applied online (this was after a phone call to my council blue badge department advising me to do so) and I got my badge after paying online via an e mail link I was sent.  It was only a short extension, can’t remember how long for, but not much more than six months, and I duly got my badge.  It’s up to you as to whether a ‘short fix’ will do for now and is worth the £10 admin fee, but at least my local council were fine with it.”

Have you had difficulties with getting your Blue Badge renewed because of the PIP backlog and how did you deal with them?  Let us know in the comments section below.

You can read the full Blue Badge criteria on the .gov website

 

The Teen Reviewing Public Transport For Wheelchair Users

April 27, 2022

A 16-year-old boy has set off across Ireland to see how accessible it is for wheelchair users to travel.

James Casserly, who has cerebral palsy, has set himself the challenge to travel to all 32 counties on public transport.

He reviews everything from wheelchair ramp availability to disabled toilet provisions in all the places he visits.

“I want wheelchair users to be able to go wherever they please and not have to worry about checking all that stuff themselves beforehand,” James said.

The Dublin teenager has already ticked off counties Westmeath, Kildare and Galway in the Republic of Ireland and has also visited County Antrim in Northern Ireland on his checklist so far.

He is hoping to make trips across all the counties, north and south, with friends and family by either bus, train or tram by November this year.

James, who only started his travel reviews earlier this month, has already amassed over 3,500 followers on Twitter.

James hopes his online reviews can go some way in helping to provide other wheelchair users with all the information they may need when they go to plan their own trips across the Emerald Isle.

He also hopes it will help highlight to companies the potential issues that someone who uses a wheelchair may have when utilising public transport services.

‘Passionate about public transport’

“I am really passionate about public transport,” James told BBC News NI.

“Today, for example, I have already been on four Dublin buses and will be on six in total by the end of the day, I just love it.”

James said the idea for his travel reviews started when he saw that there were not many other wheelchair users documenting their travel journeys.

“I saw that no one was documenting accessibility across the counties when they were travelling and I wanted to do something about that,” he said.

James said accessibility varies a lot across the island, with some places definitely being a lot easier to navigate as a wheelchair user than others.

“Places like Galway and Belfast are definitely more accessible compared to other places I’ve been,” he said.

“I really enjoyed Belfast and was really impressed with how easy it was to travel across the city on the Glider buses. We are actually planning on visiting Belfast again to do more of the tourist stuff.”

James’ mum, Vicki, said her son’s travel challenge has highlighted a lot of issues that a wheelchair user can encounter when travelling across the island.

“We will run into barriers along the way, we already have, but our approach is to highlight the problems we come across and work with the necessary authorities to improve on that moving forward.

“We live in a beautiful place, James wants to travel the country, he also wants to show everyone that if you’re a wheelchair user or have mobility issues, it’s still very possible to do something like this.”

James has said since he started his reviews people have started to contact him online, sharing their own experiences of navigating public transport across the island.

He said he was personally very excited about his next destination of Cobh, County Cork, where he will be joined by his grandfather and cousins.

Once James has visited all 32 counties, he suggested he will not stop there.

The teenager has ambitions of travelling across Europe and further afield, charting the best and worst of public transport accessibility on a more global stage.

Ukraine: ‘My Disabled Nephew Has A Home In UK – But Is Stuck In Paris’

April 26, 2022

A disabled teenager and his grandparents have been waiting in Paris for more than six weeks while their UK asylum application is processed. They told the BBC they are stuck in limbo, spending thousands of pounds on accommodation.

When Kateryna Karpenko persuaded her parents and nephew to leave Ukraine after Russian shells started falling, she thought it would not take long for them to join her in the UK.

Staff at the UK visa centre in Paris then said it would take a maximum of five working days for their paperwork to be processed and for asylum to be granted.

Six weeks on, they are still waiting.

“It kind of turned into a couple more days, couple more days, and now we’re over a month,” Kateryna says. “They had to go through a lot, fleeing Ukraine, and they have no idea what’s happening with our home, our family, our lives.”

Her parents Oleksandr and Vira Karpenko fled their home in Irpin with their grandson Nikita Shepel after the Russian regime bombed Oleksandr’s workplace. The town on the outskirts of Kyiv was the centre of a key battle for the capital and heavily shelled by Russian forces before they were repelled.

Kateryna, who has lived in the UK for almost 10 years, says she promised to take care of them until they were able to return home, in return for knowing they were safe.

Her nephew’s parents stayed behind in a relatively safe area, but they wanted him to leave Ukraine to enable him to get medical care for a condition he has had since childhood. The war meant he could no longer get health check-ups there.

Other cars on the road were being shot at while the trio fled. It took over a day for them to cross the border into Poland as so many others were also trying to leave.

“That was a sense of panic,” Kateryna says. “So I wish I could give them that calm and the knowledge that we’re all together as part of our family here in the UK. Instead they’re stuck in this state of limbo.”

She was waiting for them in Krakow, Poland, when her parents and 19-year-old nephew arrived. There, they faced a two-week wait for an appointment to process the mandatory biometrics application.

The family decided it would be best to apply for UK asylum from Paris, where they could get an appointment within days. So they packed their belongings into two suitcases and drove for 22 hours to the French capital, where they remain. Kateryna then had to return to the UK.

The UK Home Office has been accused of a chaotic and overly-bureaucratic response to the Ukrainian refugee crisis. At the beginning of March, it launched a family visa scheme for Ukrainians who have an immediate or extended family member in the UK.

It then launched the Homes for Ukraine scheme, under which people in the UK can nominate an individual or family to stay with them rent-free for at least six months.

Figures released by the UK government on Thursday 21 April showed a total of 71,800 visas had been issued under the two schemes.

But, as of Monday 18 April, just 21,600 Ukrainians had arrived in the UK, according to figures from the Department for Levelling Up, Housing and Communities and the Home Office.

EU countries are allowing Ukrainian refugees in for up to three years without a visa and more than four million people have fled to neighbouring countries since the Russian invasion.

Home Secretary Priti Patel has insisted “security and biometric checks” were vital to keep British citizens safe.

Kateryna’s family applied for the family scheme on 9 March and submitted their applications and biometric passports at the UK visa centre on 11 March.

They have received no update and, because of the uncertainty of the length of their stay, Kateryna has been unable to arrange stable accommodation.

Some friends in Paris have housed them for a few nights, but otherwise she has been looking for short-term AirBnBs, which is costing her thousands of pounds.

“It may seem like very small things because, you know, there’s a war going on in Ukraine, but they have to check out from the flat at 11am, and the next place would only allow them to move in at 3pm. So they would have to wait around, even if it’s rain or something, they have to find a place with a couple of their bags to stay until they can check in.”

Kateryna feels frustrated that after their traumatic experience, she cannot tell them they are now safely in their second home.

“I qualify as a sponsor, I already have a place for them to stay, I can support them. All it takes is just for them to be able to physically cross the border, which is so, so close.”

Kateryna says she has tried to access medical care for her nephew in France, but without identity papers they cannot proceed. Typically in Ukraine, he would see someone once a month to monitor his condition.

“I promised my sister, his mother, that I would take care of him. And I feel like I’m failing on that right now. So of course, it worries me.”

She is also unable to arrange care in the UK as she can’t say when he will arrive.

Kateryna visited her family in Paris at Easter and speaks to them each day, but is frustrated by her lack of ability to help.

“I’m living here. I’ve been living here for the past 10 years. And I feel like, I can’t do anything to get my family over here. So I feel sad and helpless, about what’s going on.”

From Paris, Nikita told the BBC, “I know that I need medical care, and I can’t get it in France. That’s why I know I need support in England.”

He says the situation makes him feel bad.

“I don’t know, what do I need to do? I don’t know French at all. And my grandparents don’t know the language too and they can’t go to the shop to buy something. And we went to visa at the embassy more than five times and we can’t get the answer. That’s why we can stay only in the flat and wait for an answer from the embassy.”

Kateryna says the British people have offered so much support and it was clear the public was open to Ukrainians coming to the UK.

“The people who want to come, they’re fleeing from actual horror in their home countries, they’re not coming here in search for something. They’re just looking for refuge.

“So the ability to expedite the process, and for them to find some stability would mean a world to them, because of what they went through.”

A government spokesperson has said it had launched one of the “fastest and biggest visa schemes in UK history” following the invasion and that “changes the Home Office has made to streamline the visa system, including simplifying the forms and boosting staff numbers, are working”.

Student With CP Searches For Walsall Voice

April 26, 2022

A student with cerebral palsy is searching for a voice with a Walsall accent.

Daniel Challis, who currently uses a communication device to speak, has appealed on social media for people with a regional accent to help.

The 18-year-old has said he was fed up of “sounding like a robot” and would like a voice with a regional accent in order to sound like his family.

His mum, Sarah Challis, said it would “massively boost his confidence”.

“My communication aid currently has a generic voice which sounds robotic and doesn’t sound how I would if I spoke,” Mr Challis said. “This is why I’m looking for a voice that sounds like me.

“Choosing a voice that I can speak with would mean the world to me.”

Born and bred in Aldridge, the sixth-form student is hoping to find a voice from the town.

He was inspired to launch the appeal after following the career of comedian Lee Ridley, better known as Lost Voice Guy, who last year found a voice with a Geordie accent.

‘Be his own person’

Auditionees are being asked to get in touch with a recording of themselves reading the first page of Harry Potter and the Philosopher’s Stone.

Mr Challis currently uses eye-gaze technology to operate his communication aid and speak. The device is preloaded with words that he has to memorise.

There is also an option for him to spell each word in order to form a sentence.

His mum said a Walsall accent would give Mr Challis “his own identity”.

“He’ll be able to sound like his family and the people around him. It will really give his confidence a massive boost.

“He’ll be moving away to a residential college where he will meets lots of new people and wants to be able to speak in his local dialect and be his own person.”