Hospitals Fail People With Learning Disabilities, Says Watchdog
The safety of people with learning disabilities in England is being compromised when they are admitted to hospital, a watchdog says.
The Health Services Safety Investigations Body (HSSIB) reviewed the care people receive and said there were “persistent and widespread” risks.
It warned staff are not equipped with the skills or support to meet the needs of patients with learning disabilities.
Nearly one million adults in England are living with a learning disability.
The watchdog launched its review after receiving a report about a 79-year-old who died following a cardiac arrest two weeks after being admitted to hospital.
The man, who had a mild learning disability and struggled with speaking and hearing, was originally admitted with chest and skin infections.
He became anxious while in hospital and staff struggled to communicate with him, partly because of problems with his hearing aids.
But the difficulties were also compounded by the fact the sole specialist learning disability nurse employed by the hospital was on leave.
During his two weeks in hospital, the man refused care as well as blood tests. When a successful blood test was taken it was discovered he was suffering with kidney failure, but he died following a cardiac arrest before those results were known.
The watchdog said the hospital had failed to meet his needs sufficiently.
As part of its investigation, HSSIB also looked at the care provided in other places to people with learning disabilities.
It warned systems in place to share information about them were unreliable, and that there was an inconsistency in the availability of specialist teams – known as learning disability liaison services – that were in place in hospitals to support general staff.
It also said general staff had insufficient training – although it did note a national mandatory training programme is currently being rolled out.
Senior investigator Clare Crowley said: “If needs are not met, it can cause distress and confusion for the patient and their families and carers, and raises the risk of poor health outcomes and, in the worst cases, harm.”
Saffron Cordery, of NHS Providers, which represents hospitals, said services were committed to “stamping out” the inequalities this group of patients faced.
But she said there needed to be investment in training programmes and a more consistent approach to specialist support.
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Touchscreen Card Devices May Prevent Blind Customers Paying
Blind customers are being left “frustrated” and “embarrassed” by inaccessible payment devices.
Some shops have buttonless touchscreen card readers, meaning you need sight to tap in your PIN.
They are increasingly popular because they are cheap and the screen can be used to advertise items at checkout.
Technical solutions exist for many machines and businesses could find themselves in court if they do not have them enabled.
Many blind people told the BBC’s Access All podcast they have had to tell their PIN to strangers so they can have it typed in for them, or be forced to leave their unpurchased items behind because they’re unable to pay.
Angharad, an accessibility expert from Wales who is blind, told Access All she will refuse an item when asked to use one of these machines.
She said giving her PIN out to a sales assistant, or even someone she’s with “feels like an invasion of privacy that other people just don’t have to do”.
Angharad is one of many listeners to the Access All podcast who got in touch with experiences of being unable to pay because of the machines’ inaccessibility.
Dave Williams from blindness charity RNIB, who also spoke to the podcast, said the devices are “increasingly used by, particularly, the small-to-medium-sized businesses because they’re very widely available”.
He points out that the RNIB and UK Finance, who regulate payment services such as card readers, developed accessibility solutions for this problem a few years ago.
“Some of the manufacturers have tactile templates that fit over the touchscreen. There are also accessibility modes on some devices which will offer some audio cues to help you,” he said.
However, blind consumers have told us retailers don’t appear to know about these options and point of sale problems still continue to frustrate.
Lawyer Chris Fry, who specialises in disability discrimination, said it’s not down to the manufacturers of the device, it’s the retailers themselves who could be in breach of the Equality Act.
“If I was instructed by somebody who then couldn’t access the service then we would be suing the business itself,” he said
Fry has been involved in several cases involving inaccessible card readers, and says that if a business offers to take cash as an alternative, that’s only a good solution if “handle correctly”.
“You should be told as a customer that your only option for payment is touchscreen so that you can make alternative arrangements.
“It’s no good getting to the counter after having done your shop and not knowing … how you’re going to pay, and then where the ATM is in order to go and pay.”
We contacted the Federation of Small Businesses about the issues being faced by blind users.
Their Policy Chair, Tina McKenzie said: “Digital payment systems which use touchscreen readers can be convenient for small retailers and for many customers who prefer to pay by card. But it’s absolutely vital for accessibility for blind and partially sighted people to be considered as well.
“Accessibility is a basic necessity, and with digital payment options continuing to evolve it should be at the forefront of card company and terminal manufacturers’ minds.”
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UK’s First Deaf Professor Of Deaf Studies Appointed
An academic in Edinburgh has become the first deaf professor in the UK in the field of Deaf Studies.
Annelies Kusters, of Heriot-Watt University, has studied deaf communities around the world for almost 20 years.
Her promotion in the Department of Languages an, externald Intercultural Studies , externalmakes her a top academic in the field, according to the university.
“I am standing on the shoulders of the deaf lecturers and scholars who educated me – and I support others to stand on mine,” Prof Kusters said.
Prof Kusters was educated by deaf lecturers in Bristol but she is the first academic in her field of study in the UK to reach the title of full professor.
Both Europe and the United States have deaf professors in Deaf Studies and Sign Language Studies.
Deaf Studies has existed since the 1970s and is a field of study that explores the lives of deaf and hearing-impaired people throughout the world.
Prof Kusters was promoted from associate professor to full professor after working at Heriot-Watt since 2017.
She described her research interests as “observing deaf people in their day-to-day lives” and this work has taken her to Ghana, India, Surinam, Brazil, Kenya, Italy, Denmark and France.
“My PhD was in a Ghanaian village with a high rate of hereditary deafness,” Prof Kusters said.
“While other researchers are fascinated by the genetics or just the linguistics of the local sign language, I was interested in learning about their daily lives – how they communicate, socialise, and so on.”
Prof Kusters also recently took part in a cabaret show, external at The Stand comedy club in Edinburgh.
While using British Sign Language (BSL), a translator spoke in verbal English while she presented to the crowd.
Born in Belgium, Prof Kusters got her masters at the University of Leuven before going to Bristol to become a PhD in Deaf Studies.
Now at Heriot-Watt, Prof Kusters said she was “especially passionate about supporting other deaf scholars in their careers”.
She runs a group called ‘Signs@HWU’ that focus on Deaf Studies, sign linguistics and sign language interpreting studies in the university.
Professionally, Prof Kusters said she has a range of responsibilities in the university, including being co-director of engagement in the School of Social Sciences.
“Balancing my professional life with personal responsibilities has been demanding,” she said, “I have a family with two children to care for.”
She said as with any academic in her position, this can become an issue.
‘Long overdue’
Prof Jemina Napier, chair of intercultural communication, said: “Heriot-Watt University is proud to have the first deaf full professor in the UK.
“After almost 40 years of Deaf Studies research and teaching in universities in the UK, it is long overdue, as deaf scholars should be leading at the forefront of this discipline.”
“To be honest, it is overdue,” Prof Kusters said on being the first in the UK.
“It’s a surreal realisation that I’ve reached a position that many of my deaf peers, including those who directly mentored me haven’t.
“Truly, any one of them could have very well been in this pioneering position.”
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Plans To Close Rail Ticket Offices In England Scrapped
Plans to close hundreds of rail ticket offices in England have been scrapped.
Transport Secretary Mark Harper said the government had asked train operators to withdraw their proposals because they failed to meet high passenger standards.
However, a source told the BBC rail bosses were “furious”, saying the original plans had been approved by the Department for Transport.
The proposals had sparked concerns from unions and disability groups.
The plans were put forward by train operators as a way to save money. They had come under pressure from the government to cut costs after being supported heavily during the Covid pandemic.
Train companies said that only 12% of tickets were now bought at station kiosks.
But passenger watchdogs Transport Focus and London Travelwatch objected to the proposals, saying they had received 750,000 responses from individuals and organisations in a public consultation.
These included “powerful and passionate concerns” about the potential changes, they said.
The watchdogs said they had secured significant changes, including getting companies to revert to existing times for when staff would be available at many stations.
However, serious concerns remained, including ticket machine capability, accessibility and how passenger assistance and information would be delivered in the future.
In September, Prime Minister Rishi Sunak said closing ticket offices was “the right thing for the British public and British taxpayers” as “only one in 10 tickets are sold currently in ticket offices”.
But MPs had warned in a letter last week that the plans went “too far, too fast”.
Announcing the decision to reverse the closures, Mr Harper said the government had made it “clear to the rail industry throughout the process that any resulting proposals must meet a high threshold of serving passengers”.
“The proposals that have resulted from this process do not meet the high thresholds set by ministers, and so the government has asked train operators to withdraw their proposals.”
However, the decision to backtrack on the plans has caused anger among train bosses, a senior rail source told the BBC.
“They have been made to sell these plans, defend them and change them to try and get them over the line. All in the face of the inevitable onslaught of criticism.
“All of these plans were approved by officials and ministers at the DfT. To say they fell short of their expectations is totally disingenuous,” the source said.
Labour’s shadow transport secretary Louise Haigh called it “shambolic” and a “humiliating climbdown”, saying the cancelled plans had been “a colossal waste of taxpayers’ money”.
The RMT union described Tuesday’s decision as a victory, while TSSA – the union representing rail ticket office workers – said it was delighted.
The planned closures were the latest flashpoint between train companies and unions in their long-running dispute over pay, jobs and working conditions.
It led to several protests and threats of legal challenges from disability campaigners and from five Labour metro mayors.
But the body representing train companies, the Rail Delivery Group (RDG), consistently defended the proposals.
Natasha Winter, who led a campaign to keep her local ticket office in Stourbridge open, said she was “thrilled” the government had listened.
She said ticket office workers provide an” invaluable service” and that people “trust and rely on them”.
“They’re at the heart of our community,” she said.
The RDG said the closure plans that had been put forward were about the “changing needs of customers in the smartphone era” and the “significant financial challenge” following the pandemic.
It said it would continue to look at other ways to “improve passenger experience while delivering value for the taxpayer”.
Disability campaigners called the result “bittersweet”.
Transport for All, a disabled-led organisation, called it “the best possible outcome”, but added that while the government was “eventually swayed, it is appalling that disabled people’s concerns were dismissed for so long”.
Plans to close hundreds of rail ticket offices in England have been scrapped.
Transport Secretary Mark Harper said the government had asked train operators to withdraw their proposals because they failed to meet high passenger standards.
However, a source told the BBC rail bosses were “furious”, saying the original plans had been approved by the Department for Transport.
The proposals had sparked concerns from unions and disability groups.
The plans were put forward by train operators as a way to save money. They had come under pressure from the government to cut costs after being supported heavily during the Covid pandemic.
Train companies said that only 12% of tickets were now bought at station kiosks.
But passenger watchdogs Transport Focus and London Travelwatch objected to the proposals, saying they had received 750,000 responses from individuals and organisations in a public consultation.
These included “powerful and passionate concerns” about the potential changes, they said.
The watchdogs said they had secured significant changes, including getting companies to revert to existing times for when staff would be available at many stations.
However, serious concerns remained, including ticket machine capability, accessibility and how passenger assistance and information would be delivered in the future.
In September, Prime Minister Rishi Sunak said closing ticket offices was “the right thing for the British public and British taxpayers” as “only one in 10 tickets are sold currently in ticket offices”.
But MPs had warned in a letter last week that the plans went “too far, too fast”.
Announcing the decision to reverse the closures, Mr Harper said the government had made it “clear to the rail industry throughout the process that any resulting proposals must meet a high threshold of serving passengers”.
“The proposals that have resulted from this process do not meet the high thresholds set by ministers, and so the government has asked train operators to withdraw their proposals.”
However, the decision to backtrack on the plans has caused anger among train bosses, a senior rail source told the BBC.
“They have been made to sell these plans, defend them and change them to try and get them over the line. All in the face of the inevitable onslaught of criticism.
“All of these plans were approved by officials and ministers at the DfT. To say they fell short of their expectations is totally disingenuous,” the source said.
Labour’s shadow transport secretary Louise Haigh called it “shambolic” and a “humiliating climbdown”, saying the cancelled plans had been “a colossal waste of taxpayers’ money”.
The RMT union described Tuesday’s decision as a victory, while TSSA – the union representing rail ticket office workers – said it was delighted.
The planned closures were the latest flashpoint between train companies and unions in their long-running dispute over pay, jobs and working conditions.
It led to several protests and threats of legal challenges from disability campaigners and from five Labour metro mayors.
But the body representing train companies, the Rail Delivery Group (RDG), consistently defended the proposals.
Natasha Winter, who led a campaign to keep her local ticket office in Stourbridge open, said she was “thrilled” the government had listened.
She said ticket office workers provide an” invaluable service” and that people “trust and rely on them”.
“They’re at the heart of our community,” she said.
The RDG said the closure plans that had been put forward were about the “changing needs of customers in the smartphone era” and the “significant financial challenge” following the pandemic.
It said it would continue to look at other ways to “improve passenger experience while delivering value for the taxpayer”.
Disability campaigners called the result “bittersweet”.
Transport for All, a disabled-led organisation, called it “the best possible outcome”, but added that while the government was “eventually swayed, it is appalling that disabled people’s concerns were dismissed for so long”.
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Mixmups: Behind The Scenes With The Disabled Stop Motion Characters
For every generation of children there is a TV series that stays in their hearts and minds even through adulthood. Rebecca Atkinson is hoping her stop motion creation, Mixmups, is going to be just that.
Every day a team of animators manipulate the handmade puppets of Pockets, Giggles and Spin to capture 10 seconds of footage for the new 52-part pre-school series.
It’s slow going, but “incredibly exciting” for creator Rebecca Atkinson, who has hearing loss and is vision impaired.
Having worked in TV for almost three decades Rebecca had always been frustrated by the lack of disability representation. So when she had the idea for Mixmups she told BBC Access All she saw it as her chance to “create a children’s brand that does disability in the way I think it should be done”.
And it is about to go “crashing” into the mainstream on Channel 5’s, Milkshake!
Mixmups follows three friends – Pockets, Giggles and Spin – who live in a helter-skelter house in Mixington Valley, which Rebecca says was inspired by Great Yarmouth.
Pockets is visually impaired and uses a guide dog called Yapette. She’s called Pockets because when Rebecca started losing her own vision she realised “you have to know where stuff is”.
Giggles is a cat with curvature of the spine who uses a wheelchair and Spin is non-disabled and very boisterous.
Mixington Valley is an accessible haven for the three. As well as a slide going down the helter-skelter, there’s a lift going up with automatic doors into the garden, and wheelchair accessible swings.
It’s a world that shows how accessible and inclusive life can be. And giving children the chance to see that is important to Rebecca.
“I had hearing aids from the age of three,” she says. “And I never, ever, saw anybody anywhere with hearing aids.”
She remembers a “spectacular” moment when she was watching Blue Peter and noticed the presenter had something in their ear.
“When I saw that hearing aid, I thought, ‘that means I can be a presenter!'”
But when her mum informed her it was actually an ear-piece, Rebecca’s “heart sunk” and she took that to mean she could never be on TV.
“What we have to remember about children and representation is that you, as a child, fill in the blanks yourself. So if you don’t see yourself represented anywhere, you will internalize that as low self-value,” she says.
In every episode, the Mixmups go on an adventure by mixing key ingredients together. The recipe for a treasure hunt includes a pirate hat, sand and pirate noises.
When an adventure inevitably doesn’t go quite to plan the wise old Lucky Loover Bird, who appears in every episode, voices her belief – “There’s always another way”.
It’s a metaphor for everyday disabled living, full of adaptations and work-arounds.
In one episode Pockets, Giggles and Spin venture to a toyshop, only to find it is in an inaccessible treehouse. They try various methods of getting into it before re-considering the situation.
“They sack off the Old World one and just go, ‘let’s do this differently’,” Rebecca says. “They end up having to build their own toy shop that is accessible.”
The production goes deep into the details of disability. Many of the scriptwriters are disabled and Rebecca works closely with the animators who are non-disabled and keen to get it right.
They have even studied and mimicked the foot placement of guide dogs for Yapette and occasionally when Pockets walks through the door she might accidentally knock into it with her shoulder.
Rebecca also spent time with lots of disabled children who wanted to bust some myths of their own through the show.
“The children I consulted said, ‘we want to be seen out of our wheelchairs, because people assume that we sleep in them because they never see us lying on the sofa’.”
So viewers will see Giggles transfer in and out of her wheelchair and sometimes Pockets will use a cane instead of Yapette, like in real life.
Showing the details of disability as everyday occurrences is paramount to Rebecca.
Mixmups isn’t her first foray into the idea of having to “see it to be it”. In 2015 she launched the Toy Like Me campaign which modified mainstream toys to include disability elements after realising none of her children’s toys were at all representative.
“You might get a Lego grandpa with a wheelchair or a Playmobil hospital set – somebody with a bandage around their head. It’s communicating to children about disability, that it’s essentially the preserve of elderly people or temporary footballing injuries.
“It’s not showing the lived experience of disabled people in any way, shape or form. There was nothing aspirational there.”
So, Rebecca got creative herself – crafting a bright pink cochlear implant for Tinkerbell. She took photos, posted them online and they went viral.
“Nobody had explored colliding disability aesthetics with the colour and brightness and joy of toys and childhood,” she says.
Rebecca was invited to consult with toy companies, but found that these outdated images of disability were so ingrained in the designers minds it was hard to break through.
When the companies sent back “re-imagined” disabled characters, it tended to be the cliché blind man wearing dark glasses.
It’s a “perpetual wheel” of assumptions she’s trying to break with Mixmups and it starts right at the beginning with the storytelling.
One of her favourite episodes is an Easter Egg hunt, with eggs that beep.
The whole game is about the friends finding Easter eggs together using sound. Rebecca believes most stories might use noisy eggs as a resolution to a narrative involving a blind character who couldn’t find regular ‘silent’ eggs.
“That sets disability as the problem,” she says. “I’ll make the Beepy Egg hunt exist from the beginning, with no mention of why,” so inclusion becomes normalised and no play is off limits.
The Mixmups motto, “there’s always another way”, is a phrase Rebecca has thought a lot about while developing the show.
Based in Norfolk and continuing to lose her sight she finds travelling fatiguing. The growth of online working means she has been able to oversee the production remotely, something which might not have been as accepted pre-pandemic.
“That flexibility of work is the only way that I’ve been able to do it,” Rebecca says. “You do have to be realistic about your own health condition and about what is practically feasible.
“Sometimes that other way is actually saying ‘no, I’m not going to force myself to do this’. “
But she is glad she dived head first into the Mixmups world. Rebecca says everyone has been “extraordinarily supportive” and Mixmups has been bought by TV companies in Australia, Canada and Ireland.
“It’s just a total joy for me to be able to see this on screen after so long developing it. I just want disabled people to claim this story.”
Catch Mixmups every Saturday and Sunday from 4th November at 8.15am on Channel 5’s Milkshake! and streaming on My5. You can listen to the podcast and find information and support on the BBC Access All homepage.
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Disability And Sex Is Still A Taboo, Says Mared Jarman
Have you ever wondered what challenges a blind person might face in their sex life? Or how they go about meeting a partner in the first place?
Actress Mared Jarman wants to tell you, all to bust myths and break taboos, about disabled people and sex.
“People don’t want to think of disabled people as sexual beings with sexual desires, wants and needs,” said Mared, who has a degenerative eye disease.
“The reality is that disabled people are just as sexual as anyone else.”
Mared was diagnosed with Stargardt disease when she was 10 and lost about 80% of her eyesight in her right eye within a week when she was 14.
Today she is almost blind in her right eye and has more vision in her left but it has deteriorated.
Sick of disabled characters being depicted either as sexless or fetishised, she wrote BBC comedy drama How This Blind Girl.
The series sees blind 20-something Ceri, played by Mared, navigate the already fraught world of dating.
Earlier this month her efforts saw her handed a BAFTA Cymru Breakthrough award.
“Disability and sex is a bit of a taboo subject,” said Mared.
“It’s just ridiculous to think that we don’t have the same instincts and drive as anybody else.”
She said all too often misconceptions were made about disabled characters.
“When I go up for roles that are ‘sighted’ a huge percentage of them have nude scenes and are sexual, the girl is flirtatious, there’s a sex scene… but I can’t remember a single disabled role I’ve gone up for where there’s a nude scene, a kissing scene, a sex scene, anything,” she said.
“[There’s an assumption of] ‘that person won’t want to have sex so we don’t have to worry around about that’ and then on the other side there’s the complete fetishisation of disabled people from devotees and devotism to very, very extreme.
“They’re both huge problems because either they desexualise us or completely sexualise and fetishise us. There’s just no in between [which is the] reality.”
Mared said as a disabled person opportunities had been “few and far between”.
“As an actor it’s rare that disabled roles come my way and when they do they are often very specific as to what they want to portray as a disabled person.”
Mared – who grew up in Cardiff with her father musician Geraint Jarman and mother actress Nia Caron – decided on a change of tack, began writing and immediately found it cathartic.
“It can be soul destroying constantly waiting for someone else to validate you and your worth is, it can have such a negative effect on you,” she said.
“I didn’t filter myself…. I want to be unapologetically a version of a disabled person that I think so many of us in the modern world are.”
From kissing the wrong person to accidentally joining a table of strangers in a pub, how much of what happens to her character Ceri is autobiographical?
“It isn’t solely my experience… it’s of course dramatised but it is the reality of being a young, disabled person trying to navigate a mainstream life,” she said.
No, she has not kissed the wrong person, but, she has taken a seat at the wrong table when on a date.
“It was hilarious, it was humiliating, but it’s far better to go ‘OK, I’ll remember that, and I’ll use it, and I will win in the end’,” she said.
Like her character Ceri, in the past Mared’s instincts have been to attempt to conceal her disability
“It dominated my experiences with people. I didn’t actually enjoy the dating part, it just became solely about this act… but it’s amazing what you can get away with, especially if people are drinking,” she said.
For many people with a disability, “masking” can become a big part of life, said Mared.
“Not just in dating, but in in day-to-day survival – passing as ‘able’ is a huge part of my survival just because I live in a city and disability hate crime is far more common than we think it is.”
Mared’s recent Bafta Cymru win was a big moment, not just for her career but also in terms of her journey of accepting and embracing her disability.
Accepting the award, she said: “For every little blind girl, blind boy, disabled person who has been told that they can’t do anything and have a quality of life, this is for us because that’s wrong’.”
Reflecting on that moment, she said: “I’d reached a moment in my life that I never, ever, ever thought would be possible because of how society and other people had made me feel and unfortunately I’d started to believe myself.”
Claiming her identity as a disabled person has been and is still an ongoing journey, she said.
“I used to find it very difficult just to utter the words ‘I am blind’ to another person – it’s still a daily challenge but I don’t find it as difficult anymore,” she said.
“You don’t just get a badge [that says] ‘I now have disabled pride for the rest of my life’ – it’s a journey, it’s a process, it comes and it goes.”
She described her disability as “a two-sided beast”.
“Being blind is a part of who I am and yes it’s exhausting, yes it’s tiring and scary, but it’s also wonderful.
“It has taught me things about people and about the world and has given me opportunities that I wouldn’t otherwise have.”
She wants to see change in her industry and thinks open casting for roles (auditions where you don’t need an invitation) would be a great place to start.
“It doesn’t have to affect the storyline, disabled people are a part of our lives, we make up a huge percentage of the population,” she said.
“We need to stop ignoring that disability is just a part of life.”
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