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
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.”
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.
My friend Jude Bissett can tell you – she first got the news in 2003 and has just launched a new blog about life with a brain tumour, Bomb in my brain. The site is pretty new, but it’s easy to see how Jude’s powerful and honest testimony of a life changing experience will be an important resource for others undergoing the same thing. And even if the issue isn’t something you’ve experience of, it’s an engaging and insightful read.
Jude explains: “I evaded writing about what happened for 15 years. Why? I don’t really know. It was in my head for all that time, usually safely in the background, largely ignored but with occasional flashbacks and incidents that forced it forward. And this time it’s back in a way I can’t ignore and the time feels right to document it, in part therapy, in part to have an accurate record and in part to help anyone else who may face a similar situation and be seeking clues as to what they might expect. Though it will only be clues, we are all different, we all experience life differently.”
Here’s a recent extract from September:
By the end of my “break” I am feeling basically back to normal. The summer holidays have been particularly long with glorious weather, it felt like they would go on for ever. Then before I know it, Posy has her birthday and I am due back at hospital for round two. No tears for me this time, not now I know the drill. I fair skip into the Colney Centre, ready for my spot in a comfy chair and a nice cup of tea from a McMillan volunteer. During the week I had a blood test done at my local surgery. As ever they found it difficult to squeeze much out of me but there was enough apparently for them to check my platelets which were excellent, thank you smoothies! They need to check the white count but they have a machine on site to do this.
My Portacath is used to get the blood and I am delighted it can be used both to get blood out as well as do the infusion, what a clever device, how smug I feel for getting it put in!After a few minutes the nurse returns. She is very sorry but they can’t proceed with my treatment. This news comes as an absolute shock to me, this is not something I thought would happen. It seems my white count is too low. It has to be over 1 and mine is languishing at 0.24. But I feel fine! What has gone wrong? What have I been doing wrong? I’ve had all the smoothies with spinach and seeds and other shite, why hasn’t that been good enough? “it’s just the treatment” the nurse keeps repeating. I don’t understand and I feel unaccountably upset. The nurse tells me they’ll defer me a week and my count will come back up. I should be pleased at the reprieve but I am fretful as I’ve plans to attend a good friend’s 50th at the end of the summer and I’m worried this will throw out my timing. But I calculate the next week will still be ok and I defer for the week and return home.
You can read more of this extract at Bomb in my brain by Jude Bissett and please share widely.
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.
“I hope I can get them to think a bit differently, and then to help make things happen a bit differently.”
These are the words of Dayo Koleosho, an actor with the groundbreaking theatre company Access All Areas, describing what he hopes the public will gain from his new show, Madhouse re:exit.
I’ve just written about the project for the Guardian. It’s a show that has been developed and performed by autistic and learning disabled artists and it highlights themes of institutionalisation and isolation, and explores the past, present and future of social care.
The show, which I caught during its London run, opens at the Lowry in Salford on 17 May as part of the Week 53 festival and follows more than two years of research and development.
“As services are cut, people are becoming stuck at home and the isolating walls of institutions are being replaced by people’s bedroom walls,” says Nick Llewellyn, artistic director of Access All Areas. “The walls are still there but [they are] more hidden or societal rather than physical.”
All the images here are shot by photographer Helen Murray, and you can read the entire piece about this superb show over on the Guardian website.
While imbibing a cup of coffee at the computer, my Twitter feed led me to an article in the Daily Mail with the strapline, ‘Babies with Down’s syndrome who are given green-tea supplements are less likely to develop facial disorders.’
Well, you could have knocked me over with a tea leaf. This was something. We always knew there was more that we could and should have done for our daughter 26 years ago when she was born with Down’s syndrome.
We had clearly missed a trick. The answer to stigmatisation, exclusion and discrimination lay in a tea bag. If only we had supplemented her diet with green tea, it all could have been so very different. Apparently, new research in Spain suggested: ‘Six out of seven Down’s syndrome sufferers … developed facial dimensions would have matched her healthy peers.’
Where to begin?
Sarah does not suffer from Down’s syndrome. She has the genetic condition, which affects her life in many ways, but if anyone has met Sarah and other children and adults with Down’s syndrome, ‘suffering’ would not be the word that comes to mind. Sarah’s oft repeated phrase, ‘I love my life’ would easily dispel that myth.
I’m also intrigued by the comparison with ‘healthy peers’. Does that make her unhealthy because of a genetic condition? Sarah does not have a disease. The article continued, ‘Researchers hope that normalising the facial features of Down’s syndrome may help to reduce the stigma patients experience.’
‘Patients’? ‘Stigma’? People with Down’s syndrome are not ill and the only stigma that they might experience is the publication of such articles, which perpetuates the stereotypical view of my daughter and others. Increasing the awareness and understanding of Down’s syndrome and the opportunities for people with the condition will do much more to reduce any stigma.
Sarah has facial features and physical characteristics that are more common in people with Down’s syndrome, but she looks more like us, her parents, than others with the condition. Her physiognomy remains unmistakably that of a young woman with Down’s syndrome and that’s who she is. Her Down’s syndrome is a part of her very being so we do not wish to take that away from her. We would only be changing the way she looks to make her features more acceptable to other people. In any case, her unique character is so prominent that her features become irrelevant.
Of course, supplementing diets is not a new idea; over 20 years ago parents were experimenting with TNI (Targeted Nutritional Intervention) whereby supplements of vitamins, minerals, amino acids and digestive enzymes were given to children with Down’s syndrome. The programme was supposed to help cognitive development, clarity of speech and it was even claimed that there was an improvement of facial features. Even then, the term ‘improvement’ made me me somewhat nervous, as the term can only be subjective and dictated by society’s desire to make everyone appear ‘normal’.
Are we now still are trying to eradicate the physical characteristics as a way of denying the diagnosis? Everybody has his or her own individual personality and physical make-up. People with Down’s syndrome are all unique individuals with their own personalities, family backgrounds and aspirations that make them who they are. Every individual person should be valued for who they are, not what they look like.
Anyway, I had pondered too long over this preposterous article and so by now my coffee had gone cold. Maybe for my next beverage, I should forget the caffeine and imbibe some green tea. I had, after all, always wanted to look like George Clooney. Apparently, a nightly cup of Earl Grey can create a noble look, a steaming demitasse of Darjeeling before bed might turn me into a Kit Harrington doppelgänger and who knows the effect of a pint of Lapsang Souchong a day might achieve?
No…on second thoughts I think I’ll stick to the java and remain just who I am.
Being able to do her own washing and having responsibility for her personal possessions symbolised the freedom Michelle Stevens* wanted but was denied in institutional care. Stevens features in my latest Guardian article (screenshot above). Her severe mental health problems meant she was in and out of residential care and mental health wards for a decade. She recalls staff shouting at her and living circumstances that were “very closed up and not nice at all”.
Today, however, Stevens says she is “much happier and freer”. She has a bedroom in a large double-fronted Victorian house – and she loves the garden at her supported living home in West Norwood, south London, which is run by social care provider Certitude. “[It] is cleaner than other places I have been, and has nicer facilities,” says Stevens.
She enjoys socialising – with the 11 other residents and locally – and for the first time in three years, she does her own washing and is trusted with her belongings.
The women-only housing is designed for those with enduring and complex mental health issues who may be stuck in restrictive environments. Certitude provides support while First Priority, a housing association, manages the tenancy agreements. The home opened in September 2016 and residents, who are mostly in their 30s and 40s, benefit from individualised support that is rarely offered in residential or inpatient care.
I’m really grateful to all the women who shared their experiences for the story and talked about the “good road ahead”, as Michelle put it, which now seems to be ahead of them. Read the rest of the article here.
Barriers for physically disabled people range from blocked wheelchair ramps to buildings without lifts. The cluttered metropolitan environment, meanwhile, can be a sensory minefield for learning disabled or autistic people.
My Guardian report today looks at some of the most innovative city-based developments in the UK, Europe, Asia, America and Australia. These include skyscrapers built using universal design principles to the retrofitting of rails, ramps and lifts in transport services or digital trailblazers that help disabled people navigate their city.
For example, mapping apps make navigating cities a doddle for most people – but their lack of detail on ramps and dropped kerbs mean they don’t always work well for people with a physical disability. The University of Washington’s Taskar Center for Accessible Technology has a solution: map-based app AccessMap, allowing pedestrians with limited mobility to plan accessible routes.
Wheelchair user John Morris, who runs advice site Wheelchair Travel, says: “Seattle’s geography, with changes in elevation, sidewalk and street grade on a block-by-block basis, often make it difficult to navigate in a wheelchair. AccessMap combines grade measurements with information on construction-related street closures and the condition of sidewalks to plot the most accessible course, pursuant to the user’s needs. I would like to see AccessMap included as part of a holistic accessible route planner that includes the city’s public transportation services in building the most effective journey. Pairing AccessMap with the city’s route planner tool or with transit directions from Google Maps would make getting around Seattle easier for people with disabilities.”
Steve Lewis, a 69-year-old manual wheelchair-user who has helped co-design the Seattle technology, adds: “I spend a lot of time in downtown Seattle and am well aware of what a barrier the hills are to wheelchair travel. I have learned from experience how to navigate the downtown corridor. The best routes for someone in a wheelchair will take advantage of elevators in buildings entering on one street and exiting several stories higher on the adjacent street. AccessMap is an effort to automate and make accessible the knowledge I have acquired through experience. It currently shows graphically the steepness of the terrain. The Taskar Centre is involved in a major effort to automatically display the best routes for wheelchair users with knowledge of elevators and mass transit including the hours they are available.”
Through its related OpenSidewalks project, the Taskar Centre is developing a system to crowdsource extra information like pavement width, or the location of handrails. Nick Bolten, AccessMap and OpenSidewalks project technical lead, says: “AccessMap tackles a neglected problem: how can you get around our pedestrian spaces, especially if you’re in a wheelchair? AccessMap lets users answer this question for themselves, and OpenSidewalks will help add the information they need.”
In another US-based project, this time in Sonoma, California, a $6.8m supported-housing project, Sweetwater Spectrum, is a pioneering example of autism-friendly design. Autistic people can be hypersensitive to sound, light and movement, and become overwhelmed by noisy, cluttered or crowded spaces. However, the scheme is designed according to autism-specific principles recommended by Arizona State University. The complex, which opened in 2013, includes four 4-bed homes for 16 young adults, a community centre, therapy pools and an urban farm – all designed by Leddy Maytum Stacy Architects.
Noise is minimum thanks to quiet heating and ventilation systems and thoughtful design – like locating the laundry room away from the bedrooms. Fittings and décor reduce sensory stimulation and clutter, with muted colours, neutral tones and recessed or natural light used rather than bright lighting. Marsha Maytum, a founding principal at Leddy Maytum Stacy, says the design “integrates autism-specific design, universal design and sustainable design strategies to create an environment of calm and clarity that connects to nature and welcomes people of all abilities”.
And there’s another great project from Leddy Maytum Stacy in nearby Berkeley, the Ed Roberts Campus, “a national and international model dedicated to disability rights and universal access”. The fully accessible building, named after the pioneering disability rights activist Ed Roberts, is home to seven disability charities, a conference, exhibition and fitness spaces, plus a creche and cafe. Features include a central ramp winding up to the second floor, wide corridors and hands–free sensors and timers to control lighting.
No city is wholly accessible and inclusive, but there are groundbreaking examples leading the way – and we just need more of them.