Category Archives: Disability

BOOK Cover reveal!

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. 

Click here to find out more about Made Possible and click here to pre-order a copy and be named on the supporters’ list in every edition of the book.

erica is alive today thanks to a specialist learning disability doctor

 Erica Carlin, a woman with multiple learning difficulties, who doctors had written off. Photograph: Andy Lord

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 HandleyJoe Ulleri and Oliver McGowan reflect the inequality.

Research shows that GPs lack confidence with learning-disabled patients and that most get less than a day of training. Learning disability nurses support appropriate treatment and care plans, but figures from NHS Digital show that the number of learning disability nurses has fallen from 5,368 to 3,247 – a staggering 40% – between May 2010 and April 2018.

And I love the photo of Erica (by Andy Lord) and the way it features so prominently both online and in the print edition.

You can read the full report here.

collaborative cast breaks barriers to dance

Step Change rehearsals at Studio Wayne Macgregor

I’ve written before about the innovative work of Step Change Studios – an inclusiveLatin and ballroom-inspired company for disabled and non-disabled dancers. Now, as these photos show, the company is preparing for its second show, Fairy Tales, at Sadler’s Wells’ Lilian Baylis Studio.

Step Change Studios’ 20-strong cast is rehearsing for a storytelling-themed show next Thursday.

Since its launch in 2017, Step Change Studios has enabled almost 2,000 disabled people to dance in different venues from schools to hospitals and care homes.   

Founder Rashmi Becker says of the project: “I wanted to provide a platform for talent and challenge established notions of ballroom and who can dance.”

For info and tickets, see the Sadlers Wells website

‘People with learning disabilities must be put at the centre of their care’

Sheila Hollins with her son, Nigel, who is now a Beyond Words adviser and runs one of the Surrey book clubs. Photograph: Martin Godwin/The Guardian

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.”

Read the full interview in the Guardian

My sister’s ordinary life

I write a lot about failures in care for learning disabled people, but I just wrote something that reflects the complete opposite – it’s about my sister Raana’s very good support, and her hopes and dreams. It’s about what’s possible if and when people get the right help in a way that suits them.

Last night, another Panorama programme reflected the reality of the crisis in social care and the human impact of years of underfunding. Writing about what’s good doesn’t make the horrific stuff any easier to bear, but it does show how little it really takes to enable people to live the life they want.

You can read the post on the Fragile X Society website.

Read the piece here: https://www.fragilex.org.uk/post/my-sister-s-ordinary-life-by-saba-salman

Reports and reviews on repeat

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:

Abuse of learning disabled people won’t stop until we all matter equally

You can’t rehabilitate someone into society when they’re locked away

[eight] years on from Winterbourne, why has nothing changed?

Why is it OK for politicians to ignore people with learning disabilities?

We must stop learning disabled people being dumped in waste bins of life

Why did Connor Sparrowhawk die in a specialist NHS unit?

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

My sister has Fragile X syndrome. The barriers to an ordinary life are institutional

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.

The article also describes the short film Raana made for a recent conference run by charity Stay Up Late, a ground breaking event where everyone who spoke had a learning disability or autism, and most of the 130-strong audience worked in social care.  My sister’s film shows what she can do when she has the right support, sometging that will also be reflected in my forthcoming book, Made Possible.

As Andrew Walker from Stay Up Late’s quality checking team says: “We’re the experts. We’re the people who want to live a life … we’re no different from anyone else. We should be treated the same.”

my ordinary life, A film by Raana salman

        

A five-minute film by Raana Salman

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.

We hope it makes you smile.

‘It’s like the light’s come back on’: connecting people in care homes with their communities

Paul Williams, former champion runner, is now a fledgling public speaker thanks to a new project connecting people who use support services with their local communities (pic: NDTi)

Paul Williams has a learning disability and was once an athlete. Years in institutional care meant he didn’t mention his talent. With the Time to Connect project, which I wrote about in the Guardian today, he dug out his medals, has done a local talk and is now writing his life story.

Williams, his care organisation and volunteer are part of the Time to Connect community inclusion project. This encourages stronger links between people using care services and their neighbourhoods, and ensures they become more active citizens. Time To Connect is a partnership between social inclusion charity NDTi(National Development Team for Inclusion) and Timebanking UK, the national charity that helps people to share time and skills.

So far, Time to Connect has involved 265 people: 92 care staff, 102 older people, 39 learning disabled people, 10 people with mental health support needs and 22 time bank members. An interim reportdescribes positive outcomes for all participants: “The evaluation found numerous examples of increased confidence and motivation among care staff as well as changes to attitudes and behaviour. This is in turn leading to increased opportunities for people to connect with their communities.”

Time to Connect adds value to care work because support staff get a greater glimpse into people’s lives and characters, rather than focusing simply on their physical needs. Clive Brown, Paul’s support worker, says: “It makes the job more rewarding and it improves my relationship with the people I’m working with. It just makes me smile a little more.”

Read the full piece on the Guardian website

Institutions – in all but name

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).

Today. 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).

Campaigners have drawn attention to the fact that this new target essentially extends the original one.

Inpatient conditions for learning disabled people are also in the spotlight with a forthcoming government-commissioned review into restrictive approaches to learning disability care. In addition, similar issues are the focus of the parliamentary Joint Committee on Human Rights, which has recently been examining conditions in learning disability units.

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.”

The rush 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.” 

Another risk, 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.”

  • Read the full story in today’s Guardian