Gazala Iqbal, now 46, was overprotected at home and her sense of dependency was reinforced by patronising attitudes from health and social care professionals. One district nurse told Bradford born and bred Iqbal that she spoke really good English “for an Asian woman”.
Iqbal’s story is echoed in a story I’ve just written. The article is also based on new research by user-led charity Asian People’s Disability Alliance (APDA) into the barriers to independence for disabled Asian women. The report, Humare Avaaz (“our voice” in Urdu), follows 18 months of community research involving 90 women with a physical or learning disability, mental health issues, long-term condition or caring responsibility.
Ignorance of health and social care among families, APDA’s findings suggest, is compounded by professional assumptions. While the authorities are aware of the low or late uptake of services, the report states, they “appear content to presume that this is a choice made by ethnic minority communities”.
There are solutions. Bradford council is embedding a human rights approach into its social work. Over the last two years, the learning disability team has made support more accessible, encouraging engagement with the Asian community.
I’m thrilled to reveal the cover for my forthcoming book, Made Possible:
Thanks to the thoughtful and endlessly creative minds at Unbound for enabling me to be fully involved in the design process (aka ‘I’ve been an utterly pedantic pain in the arse’). I’m so delighted that the cover design and concept reflect the strong and positive aims of this book influenced by my sister.
I also have an update on the publication date – the book will now be published in May 2020. This may feel a long way off (and slightly later than the original earmarked date of February) but Unbound has good commercial reasons for choosing this date in the publishing calendar. It’s vital to me – and to the book’s contributors – that this anthology reaches as many people as possible, and there’s a much stronger opportunity for that nearer the summer months.
The publication date also means that the supporters’ list will now close at midnight on Tues 27 August so if you know anyone who wants to pre-order and support the book – and get their name in every single edition as a patron – they need to do it before the end of August.
Thanks again to you all for helping to make Made Possible happen – its themes of human rights, unity, inclusion and ambition (for the many – not the elite, privileged few) feel more important now than ever.
It’s not all about Boris Johnson – the UK’s first doctor specialising in profound and multiple learning disabilities will start work in a groundbreaking pilot later this year, as I report in today’s Guardian.
I spoke to Erica’s family, who told me her life was saved after a chance intervention from a specialist “intellectual disability” doctor who had trained abroad.
Erica’s experience has led to a pioneering project in her hometown of Hull in which a new specialist will be recruited by the local clinical commissioning group later this year. And campaigners say Erica’s story proves the need for a national network of similar specialists to help reduce the health inequalities experienced by learning disabled people.
An expert group, convened by former health minister and Liberal Democrat MP Norman Lamb, is researching this idea right now.
The group’s work is timely because of a growing focus on the entrenched health inequalities faced by learning disabled people. Autism and learning disability are priorities in the NHS long-term plan, and a recent NHS-commissioned review of mortality rates shows learning disabled people die earlier and are more likely to die in hospital than the general population. Recent inquests into the deaths of people including Richard Handley, Joe Ulleri and Oliver McGowan reflect the inequality.
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.