I just did a Guardian interview with Sheila Hollins. The crossbench peer is one of the UK’s foremost authorities on learning disability and mental health but the says her greatest achievement is founding Beyond Words, a pioneering not-for-profit organisation that produces picture books to help people with communication issues. “Beyond Words is what I feel most passionate about because it’s about transforming people’s lives,” she says.
Its origins lie in Hollins’ use of pictures to interact with her son, Nigel, who has a learning disability. “He would roar with laughter at Laurel and Hardy [silent] films but didn’t put a word together till he was eight.” When Nigel was nervous about an adventure holiday, his parents drew pictures depicting activities like abseiling: “When we put things into pictures, he felt more in control.”
Thirty years on, Beyond Words has distributed or sold 100,000 copies of its 57 titles, which cover everything from relationships to surviving abuse. Each title involves 100 learning disabled people as advisers or authors. There are 60 associated book clubs with 350-400 members.
Nigel Hollins, now 47, is a Beyond Words adviser and runs one of the Surrey book clubs. He lives independently in a flat near his family with support from a personal assistant. His mother says: “People see Nigel in the shops, cafe or train station. He has a life in the community.”
The government’s care watchdog the Care Quality Commission, published an interim report today into the treatment of people wiht learning disabilities and/or autism.
The report calls for a review of how adults, children and young people are locked up, segregated, restrained, far from home (that’s right – a report calling for another report..and today’s publication is just the interim report).
The health secretary’s response is that such cases will be reviewed – so, another report then.
Rather than write another report on this, here are a few headlines from recent pieces I’ve worked on with families and campaigners that tell you all you need to know:
And on that last question by the way, the campaign #JusticeforLB fought for the answer.
Tomorrow, the BBC will broadcast an expose by Panorama on abuse of people with learning disabilities and autism in secure hospitals.
There is now such a huge amount of evidence going back decades – from media to official goverment reports – about what’s wrong with how our health and social care services support learning disabled and autistic people. And a ton more on what needs to happen.
On Twitter today, #notcomplicated was a popular hashtag among campaigners, showing what’s possible in terms of supporting people well and upholding their human rights. So if I was about to get involved in the next report, review, investigation, guidance, consultation document, toolkit, standard, benchmark, framework or remit for a ‘working group’ (list goes on..) in this area, I’d start right there.
*This post is based on my short Twitter thread earlier today
What makes an “ordinary life” for the UK’s 1.5 million learning disabled people? Having relationships, choosing where to live or when to go out? Things that most of us take for granted are often denied to people like my sister Raana, who has Fragile X syndrome, the most common inherited cause of learning disability.
With the right support and an enlightened attitude that’s mindful of people’s human rights, people with learning disabilities and autism can enjoy the things most of us take for granted. I wrote an opinion piece about this for the Guardian.
My sister Raana made this film on the theme of community – helped by her brilliant support worker Indra – for sharing at this week’s (Un)Ordinary Conference in London.
The event, held by the campaigning learning disability charity Stay Up Late, was billed as “a learning disabilities conference with a difference” because professionals from the social care sector made up much of the audience and those on the platform had a learning disability and/or autism.
The event explored learning disabled people’s views on community, relationships and employment.
I’ll write about my own thoughts later, but right now I don’t want to put my own filter on what Raana wanted to share – not least because if I did, that filter would spontaneously combust into a zillion radiant pieces of joy.
I am so incredibly proud of my creative, determined sister, a fact that will be obvious to those who’ve supported and been following the progress of the book Raana’s inspired, Made Possible.
What I will add though, for context, is that Raana has fragile x syndrome and in the past she’s found it tricky to do some of the things she does now. And while she’s done public speaking in familiar places with friends and her trusted support staff, it was a huge deal for her to travel up to London for the day and be in a place she’d never been to before with a whole new bunch of people she’d never met.
Raana didn’t fancy making a speech or taking questions, hence the film with captions.
I love the photo, above, of Jamie Newcombe, taken by Martin Godwin for an article in the Guardian today.
Jamie, who has a learning disability, was once in a series of restrictive inpatient care units, including a stint in so-called “locked rehab” where he ended up with a broken arm (you can read more on his experience here).
Jamie is proof that people can thrive if supported in the right way.
The government’s long-stated ambition is to move the majority of learning disabled and autistic people from inpatient institutions like assessment and treatment units (ATUs) into community-based housing. This has been the goal of its transforming care programme, due to end in March (and actually care in the community has been the goal of successive governments for decades..).
Transforming care was launched after the 2011 Winterbourne View abuse scandal exposed the reality of ATUs. The aim was to move all inpatients into community-based housing within three years. That target was missed and progress on moving people from ATUs has been slow.
Transforming care is ending soon but there are still 2,350 people in ATUs and there appears to be no replacement for the national programme. Instead, last week’s NHS long-term plan included a new target (by 2023-24) to reduce the numbers in ATUs by half compared to 2015 levels (when there were around 3,000 people in such units).
have drawn attention to the fact that this new target essentially extends the
As ATUs rightly
fall out of favour, campaigners
fear more people will be discharged from them into care that could be equally
restrictive, like the sort of locked rehab unit that Jamie was in.
Jayne Knight has visited several locked rehab settings. Knight is an independent family advocate and founder of You Know, which helps people find community housing and care. She describes these “institutions in the community”: “There can be systems of going through one locked door after another. In some places, you are asked what is in your bag and it’s checked, people can still be restrained physically on the floor in their own homes.”
Knight recalls one six-bed facility for autistic people behind a padlocked gate at the end of a residential road, with two staff supervising each resident. She adds: “The number of people was overwhelming. There were narrow hallways and small rooms…It was noisy and the atmosphere didn’t feel calm. People shared bathrooms and so a very strict rota and timetable was in place to enable this.”
to move people from ATUs is likely to have negative consequences, says Steph
Thompson, managing director of Waymarks, a voluntary sector organisation
supporting people from hospitals into communities. Thompson says: “Pressure to
meet discharge targets is highly likely to have two unintended consequences.
One, is putting people at risk through unplanned discharges into the community.
The other, is step down or across into another ‘bed’. Both routes achieve the
discharge target but neither is good for the person.” She adds: “If you have a
performance target to meet as a commissioner and an agreed discharge date, it
can feel safer to move someone into a ready built unit with a vacancy, health
professionals and potentially a lock on the door. It fixes the figures. But
it’s not transforming care.”
says Lib Dem MP and former health minister
Norman Lamb, is the
revolving door of discharge and readmission: “There is a massive risk at the
moment driven by the nervous pursuit of a target and a recognition that they
have left it too late and if you rush to hit the target with time running out
then the risk is you cut corners, you can discharge people unsafely potentially
with the risk of them being readmitted or you discharge them to inappropriate
or unacceptable settings that don’t actually enhance their quality of life.”
Meanwhile, National figures on planned discharges reveal a marked rise in people moving from ATUs to “other” settings; from 160 transfers in March 2016 to 465 in October 2018 – that’s 20% of all 2,350 people. NHS Digital, which collates the statistics, does not collect information on what “other” settings constitute or on locked rehab or discharges into private placement.
Chris Hatton, Lancaster University professor of public
health and disability, says: “It’s hard to know where people are going,
what these ‘other’ places actually are, and whether people being moved notice
any difference from ATUs…without transparency, it’s possible to game the
statistics to make the ‘transforming care’ numbers look good while consigning
people to invisibility in places that feel very similar to inpatient units.”
The ultimate answer, says Gary Bourlet, co-founder of
campaigning organisation Learning Disability England, is that people need decent
jobs alongside good quality community housing “but there’s no national mandate
for driving this forward.”
Nice way to start off the first full week of the new year – the NHS published its long term plan today.
Depending on what you read or watch, it’s either unworkable or it could save half a million lives.
As for what it offers people with learning disabilities and/or autism – areas which the NHS proudly announced a while ago would be clinical priorities – it’s all a bit meh.
Today’s big reveal puts the long into long term.
The plan repeats longstanding aims to get autistic and learning disabled people out of long term hospital care and into proper communities – it promises a new target of 50% reduction in inpatient care by 2023/24. That’ll be 13 years since the Winterbourne View scandal where inpatients with learning disabilities were abused by care staff.
In the meantime, 2,350 people are currently languishing in hospital-style assessment and treatment units like Winterbourne View. This is just another long-term target to add to those that have already been and gone..
There’s another long term target too – for every million adults, only up to 30 people with a learning disability or autism will be in inpatient units (the equivalent number for children and young people is 12-15).
But why these numbers? Is 30 per million what equality looks like?
Then there’s a very clunky bit that’s made my head hurt:
“Since 2015, the number of people in inpatient care has reduced by almost a fifth and around 635 people who had been in hospital for over five years were supported to move to the community. However the welcome focus on doing so has also led to greater identification of individuals receiving inpatient care with a learning disability and/or autism diagnosis, so increasing the baseline against which reductions are tracked.”
This seems to be blaming the slow progress on moving people out of hospitals on the fact the NHS has realised that there are more people living in these places in the first place.
Season’s greetings to everyone – this is me with my sister Raana, thanking everyone who’s collaborated on stories, projects and posts this past year – here’s to more of the same in 2019.
Big thanks also to all of you who’ve supported or helped publicise the crowdfunded book I’m editing, Made Possible, about the talents of people with learning disabilities. It’s
partly inspired by my sister, who has the learning disability fragile X syndrome, and aims to shatter the lazy stereotypes we have about learning disability.
Here’s hoping 2019 will bring more action, instead of just more rhetoric, as I’ve written before, and the people who have to spend the festive break in inpatient care are reunited with their families soon.
A new heritage project aims to dispel misconceptions about learning disability and the lives of people who lived in long-stay institutions. The charity CASBA (Citizen Advocacy South Birmingham Area) spent a year collating stories and archive material relating to Birmingham’s Monyhull Hospital. Myth and rumour about the hospital was rife; it was referred to as the local madhouse and the term ‘Mony’ was used as a playground insult at local schools. In what is Birmingham’s first learning disability heritage project, the free event From Institution to Community, runs on Saturday October 6th.
Guest post by Joe Peacock, heritage project coordinator, CASBA
Roland Clewley was 16 when he was first admitted to Monyhull Hospital, a long-stay institution for people with learning disabilities. It was 1966 and before Monyhull, Roland been in a pupil referral unit in North Wales for 18 months and had grown up in a care home in South Birmingham. He quickly grew to hate being locked up.
Roland spent almost 15 years in institutional care.
Roland says: “It was okay at first, but I wanted to get out, you see. I wanted my own place – a flat or something. I said that to them, but they said; ‘They’re all the same, just like you’ so I started running away.”
This was not the easiest thing to do, but he remembers: “I got through the window and then went down the pipes and ran off along the canal. It was dark down there and you couldn’t see what you were doing. We didn’t get very far, then we got picked up by the police. They put us in a van and put us in a cell for a few hours until Monyhull picked us up.”
Such attempts weren’t looked upon kindly by the hospital. Contrary to local myths, there was no alarm that went off when someone ran away, but they were punished on their return. “They put me in a side room. It was like a cell. It was a bare room with just sheets and blankets on the floor to sleep on. The first time, I did a week in there, then the next time two and then three weeks at a time.” He was let out to go to the toilet and to eat, but it was a severe punishment for someone who just wanted his freedom.
He was then sent to a stricter institution called Moss Side: “Terrible, that place was” he recalls; “You were locked in all the time. You could go out in the grounds, but there were walls all the way around – it was like a prison. I was there for nearly eleven years.” In fact, Moss Side was a high security psychiatric hospital and later merged with another similar institution to form Ashworth Hospital. Roland is reluctant to disclose much of his experiences there and it is hard to imagine how tough it would have been for him. Roland was then sent back Monyhull, and it must have been quite a relief in comparison.
“It was a bit better second time – it changed a lot. When we used to be on the ward it was a male ward and you’d have male staff, but the next time I was there it was all mixed – you’d got male and female staff working there.”
He also felt more optimistic that he would be allowed out with the increased emphasis on care in the community and deinstitutionalisation in the 1980s: “What else changed is that they were taking the patients out of there. Before, you don’t know how long you’re there for, or anything like that. I thought I was going to be there until I was about 80.”
He began to be given more responsibilities, helping the physiotherapist to get patients to appointments and was even paid for working with the porters; collecting laundry from the wards. Some of the porters befriended him and they would socialise as well as work together.
He was quite a decent sportsman, too, who won a snooker tournament and has a photograph on his wall of him being presented with the trophy to remember it by. There was a table in his ward and he’d play with anyone who was up for it or just practice on his own. He also played table tennis, football and was keen to try any other activities on offer.
Perhaps, one of the most surprising things he did, due to his close work with the physiotherapist was to go skiing in Italy. “Went for a week. I kept on standing up when I fell over all the time. You want to do it – it’s a laugh.”
Another way in which he’d try to beat the boredom of institutional life was to sneak off to the local pub, the Cartland Arms. More often, though, he remembers that they would smuggle cans of cider in from a nearby shop and sit in bed drinking those after lights out.
In 1980, he was moved out of the hospital into a hostel and then into a flat where he still lives. Ironically, for a man desperate to escape the hospital, his flat overlooks the site of the former institution he was in. Surprisingly, he continued going back to Monyhull to work with the porters them even after he’d moved out and right up until the time it was closed down and demolished. He retained his income, was fed and had a social life.
Now, in his late 60s, Roland seems happy enough with his life, although when I asked when he’d last been on holiday, he replied that it was 25 years ago. With limited mobility, he must be in danger of becoming more and more isolated.
The biggest shame of his life for me, though, is all those wasted years when he was locked away. With the right support and encouragement, he was capable of doing so much more.
• Joe Peacock is heritage project coordinator at learning disability advocacy charity CASBA
• CASBA’s From Institution to Commununity is at Monyhull Church from 1.30pm on Saturday October 6th and you can watch a trailer about the project here
Rewind to 2011, and Winterbourne View seemed like a watershed moment. The promise that lessons would be learned was reflected in the government’s official report [pdf], and in its commitment to transfer the 3,500 people in similar institutions across England to community-based care by June 2014. Yet the deadline was missed, and the programme described by the then care minister Norman Lamb, as an “abject failure”.
Yet despite welcome intentions, government figures [pdf] for the end of April 2018 reveal that 2,370 learning disabled or autistic people are still in such hospitals. While 130 people were discharged in April, 105 people were admitted.
This month, an NHS investigation reflected how poor care contributes to the deaths of learning disabled people. It found that 28% die before they reach 50, compared to 5% of the general population.
Unusually, this “world first” report commissioned by NHS England and carried out by Bristol University came without a launch, advance briefing or official comment. It was released on local election results day ahead of a bank holiday. Just before shadow social care minister Barbara Keeley asked in the Commons for a government statement about the report, health secretary Jeremy Hunt left the chamber.
The most recent report was partly a response to the preventable death of 18-year-old Connor Sparrowhawk at a Southern Health NHS Foundation Trust ATU. The Justice for LB (“Laughing Boy” was a nickname) campaign fought relentlessly for accountability, sparking an inquiry into how Southern Health failed to properly investigate the deaths of more than 1,000 patients with learning disabilities or mental health problems. The trust was eventually fined a record £2m following the deaths of Sparrowhawk and another patient, Teresa Colvin.
Recently, other families whose learning disabled relatives have died in state-funded care have launched campaigns, the families of Richard Handley, Danny Tozer and Oliver McGowan to name just three. Andy McCulloch, whose autistic daughter Colette McCulloch died in an NHS-funded private care home in 2016, has said of the Justice for Col campaign: “This is not just for Colette… we’ve come across so many other cases, so many people who’ve lost children, lost relatives”. Typically, the McCullochs are simultaneously fighting and grieving, and forced to crowdfund for legal representation (families do not get legal aid for inquests).
To understand the rinse and repeat cycle means looking further back than 2011’s Winterbourne View. Next year will be 50 years since the 1969 Ely Hospital scandal. In 1981, the documentary Silent Minority exposed the inhumane treatment of people at long-stay hospitals, prompting the then government to, “move many of the residents into group homes”. Sound familiar? These are just two historic examples.
If there is a tipping point, it is thanks to learning disabled campaigners, families, and a handful of supportive human rights lawyers, MPs and social care providers. Grassroots campaigns such as I Am Challenging Behaviour and Rightful Lives are among those shining a light on injustice. Care provider-led campaigns include Certitude’s Treat Me Right, Dimensions’ My GP and Me, Mencap’s Treat Me Well.
Pause for a moment to acknowledge our modern world’s ageing population and rising life expectancy. Now consider the parallel universe of learning disabled people. Here, people get poorer care. Consequently, some die earlier than they should. And their preventable deaths aren’t properly investigated.
You can read the full article here.
Isn’t it about time that learning disabled people enjoyed the same access to cultural lives and work as everyone else?
This is one question that Venture Arts (VA) and our speakers will be asking the heritage and cultural sectors at our symposium, Making the Case, at the Grand Hall, Whitworth Art gallery on the 25th May. VA is an organisation that specialises in visual arts in the North West.
“People with autism can do things like other people that don’t have autism in society. Society should be more accepting of people and not assume people can’t do things.” This is what Amber Opka Stother says – Amber (pictured above) chairs the VA steering group, has worked at Manchester Museum and arts centre HOME Manchester and is an ambassador for learning disabled people in the heritage and culture sector.
Our symposium will showcase the experiences of learning disabled people who have formed VA’s Cultural Enrichment Programme, funded through the Heritage Lottery Fund. The programme has seen over 20 people undertake 16 week work placements in some of Manchester’s best known cultural and heritage venues.
On the day we will also be seeing and hearing about other projects from across the country and highlighting areas of best practice.
“Unfortunately, our experience shows that people often don’t feel that big cultural institutions are for them or know how best to welcome people into their buildings. In my view we need to see more learning disabled people working within culture to be able to start to overcome this and make real change happen”, says Amanda Sutton, VA director.
This kind of inclusion makes sense, adds Amanda: “You are going to feel much more comfortable about going into a building, that can otherwise feel quite austere and foreboding, if you can relate to and identify with the people welcoming you and working within the venue.”
In 2015, researchers Lemos and Crane looked at learning disabled people’s access to museums and galleries (pdf). It stated: “Despite longstanding commitments to access, participation, learning, equality and diversity, museums, galleries and arts venues are not currently required by funders or policy makers specifically to promote access for people with intellectual disabilities as they are in relation to other groups…Mainstream arts organisations did not seem always to have a clear framework of good practice for improving access for people with a learning disability. This was perhaps the consequence of widespread uncertainty and anxiety among those with little personal or professional experience of people with learning disabilities.”
So Venture Arts aims to rectify this through working with cultural institutions to introduce learning disabled people to every aspect of their working operations. We reckon that if we can get people in “through the back door”, they will gradually change attitudes and integrate into institutions. Through our work so far, this has indeed happened. People have been back stage, in the conservation rooms, behind the scenes, delivering tours, in museum shops, in the staff room and are now well known by all the staff and visitors alike.
Here’s what Amber thinks about her experiences with VA so far:
At Manchester Museum, I volunteered and worked in the shop and in the postroom and in the vivarium as well. I ended up doing a tour for my friends and family which they really, really enjoyed, it boosted my confidence about speaking to people. It was really nice meeting lots of new people I did things that most people don’t . It’s nice to see the different parts of the museum.
People were, very welcoming and I think I am helping them to learn more about working with people with autism too, maybe like how people communicate or something.
Now I’ve started a new placement at HOME, an arts centre, which I’m really enjoying. We get to go behind the scenes and see how the cinema works which is really interesting and we have worked at the front of house and we get to see some free shows as well and that’s really, really good.
I think it’s important to have people with autism working in these places to see what great skills people have and how it makes a difference to volunteering. They will be more interested in employing people with autism, it will make a big difference.
On a personal level, it has helped me to be more confident and it’s helped me to become more confident in doing other jobs and things. I also work in a school and this experience has influenced how I am with the children, I feel more confident because I had to speak to people and that has lifted my confidence.
Last year I also delivered a workshop about making galleries accessible at a conference called Creative Minds and I loved every minute of it. I probably wouldn’t have been able to do this if I hadn’t worked at the Manchester Museum beforehand. There were a lot of people there too so I was really happy with myself.
I’m really looking forward to the symposium at the Whitworth as well and to interviewing people from museums and galleries. I’m going to interview them about the job and what we do. It will be really important to come to the symposium because you will get to hear about the great work that museums do with people with disabilities.
Even though I’ve got autism I try and do things that people without autism think that people can’t do like drive, I’ve passed my driving test that was a big achievement for me because I’ve always loved cars. People with autism can do things like other people that don’t have autism in society. We need to celebrate difference and make sure that people recognise what great things people with disabilities can do. I get upset sometimes if people don’t understand me, like my driving instructor who didn’t think I could pass my test. It’s important to listen so people can know what message people are trying to get across.
My advice for other museums? People have really great skills and they should give people the chance. People with disabilities can be really good at doing lots of great things and have skills that other people without a disability might not have, which can be valuable in a workplace. For example, people can be more understanding of other people.
It would make me happy to see people with disabilities working in museums because it’s good to see people with great skills doing a good job. If people give them a chance it would be a great place to start when people don’t feel comfortable about going into a museum.
Barriers for learning disabled people in going into a museum can be the staff of a museum because they might be a bit rude towards them or can’t understand if someone has no speech or something. It might not have a ramp or the lift might not be working or someone might be deaf as well so that could be a barrier. Museums should be more accessible to people with disabilities and people should make sure they don’t put jargon and put language that people understand on their walls.
I’m looking forward to the 25th to hear about what people are going to say. I’m looking forward to meeting everyone and to what people have to say about their experiences at the museums and it should be a great day.