Tag Archives: social care

How a national scandal goes unnoticed

Tomorrow is the seventh anniversary of an event that reflects an enduring national scandal. A long-running scandal that doesn’t trigger public or political outrage.

I’ve written an opinion piece for the Guardian about this today.

On May 31 2011 BBC’s Panorama exposed the abuse of people with learning disabilities at the NHS-funded Winterbourne View assessment and treatment unit (ATU) in Gloucestershire.

There are around 1.5m learning disabled people in the UK, including my sister, Raana. But the general disinterest in learning disability means that tomorrow’s anniversary will not trouble the national consciousness.

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”.

Since then, various reports and programmes have aimed to prevent another Winterbourne View. These include NHS England’s “transforming care” agenda, which developed new care reviews aimed at reducing ATU admissions.

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.

Theatre project challenges attitudes to learning disability and autism

“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.

Dayo Koleosho as The Eater, in Madhouse re:exit by Access All Areas (all photos by Helen Murray)
Dayo Koleosho as The Eater
Imogen Roberts as The Goddess]

DJ Hassan as The BIrd

DJ Hassan as The Bird
Cian Binchy as London’s Oldest Baby

Community approach to social work delivers more personalised care

If you need social care support, why can’t services respond better to your individual aspirations – instead of fitting you into what’s already on offer?

This aim – shifting traditional social work practice to “community led” methods – is at the heart of a new programme I’ve just reported on.

Leeds is one of nine local authorities changing adult social care by developing community-led social work (in a nutshell – more local solutions). The councils are being supported in this drive by social inclusion charity National Development Team for Inclusion’s community-led support (CLS) programme. NDTi has just published an evaluation from the first year of delivery in the participating areas

Gail*, for example, has a learning difficulty, mobility problems and is prone to angry outbursts. Leeds council adult social care staff have supported her intermittently over a few years, helping with self-care and chaotic living conditions.

Recently, it considered commissioning weekly visits from a support worker to help Gail manage her home. But instead, under a new approach launched in Leeds last year, Gail met social work staff at community “talking points” – venues such as libraries and churches instead of at home or at the council. The neutral environment sparked different conversations about support. Gail said she wanted to volunteer and staff felt able to be more creative with her care.

A social worker supported Gail to explore opportunities at her community centre, where she began volunteering. Her self-esteem has grown, her personal appearance has improved and she has begun anger management classes.

Feedback from people like Gail involved in the new support method includes comments about staff such as “they listened to me” and “we did talk about the important things”.

The concept of community social work is not new, but demand for social care, pressure on staff and funding cuts mean less time and freedom to develop innovative solutions. The 2014 Care Act encourages community-focused support, but this has been hard to achieve. A difficulty in developing “strengths-based” solutions is well documented, for example, in recent guidance from Think Local Act Personal.

At Leeds, adult social services director Cath Roff says the council had two choices: “Either we go down the road of ever-tightening interpretation of eligibility criteria to manage resources, or try a new approach. Social work services are increasingly becoming the ‘border patrol’, policing in order to manage reducing budgets. None of us came into social care to do that.”

Read the rest of the piece here

*not her real name

Scrounger or superhero, and little in between: learning disability in the media

Scrounger or superhero – and little in between. This is how people like my sister, who happens to have a learning disability, are generally seen in society and the media.

The missing part of the equation is what led me to develop the book Made Possible, a crowdfunded collection of essays on success by high-achieving people with learning disabilities. I’m currently working on the anthology with the publisher Unbound and it’s available for pre-order here.

I’ve just spoken about the role of media in shaping attitudes to disability, and how and why is this changing at an event – Leaving No One Behind at Birmingham City University. The day was organised by the charity Include Me Too and community platform World Health Innovation Summit.

I wanted to support the event because of its aim to bring together a diverse range of people, including campaigners, families, self-advocates and professionals (check out #LeavingNoOneBehind #WHIS to get a feel for the debate).

This post is based on the discussions at the event, and on my views as the sibling of someone with a learning disability and as a social affairs journalist. I’ve focused on print and online media influences perceptions; broadcast media clearly has a major role – but it’s not where my experience over the past 20 years lies.

Firstly, here’s Raana:

With my sister Raana, (left) pic: Maya Gould

Raana’s 28. She loves Chinese food. She adores listening to music (current favourite activity: exploring Queen’s back catalogue – loud). She’s a talented baker and has just started a woodwork course. She has a wicked, dry sense of humour (proof here).

She also also has the moderate learning disability fragile x syndrome. She lives in supported housing and will need lifelong care and support.

The way I describe Raana – with her character, abilities first, diagnosis, label and support needs second, is how I see her. It’s how her family, friends and support staff see her.

But it’s not how she would be portrayed in the mainstream press.

Instead, this comment from the writer and activist Paul Hunt, reflects how she and other learning disabled people are seen:

Quote from writer and activist Paul Hunt

“We are tired of being statistics, cases, wonderfully courageous examples to the world, pitiable objects to stimulate funding”. Paul Hunt wrote these words in 1966 – his comment is 51 years old, but it’s still relevant (charity fundraising has changed since then, but the rest of the words are spot on – sadly).

Say the words “learning disability” to most people and they will think of headlines about care scandals or welfare cuts.

These reinforce stereotypes of learning disabled as individuals to be pitied or patronised. The middle ground is absent; the gap between Raana’s reality and how she’s represented is huge.

How often, for example, do you read an article about learning disability in the mainstream media which includes a direct quote from someone with a learning disability?

Stories are about people, not with people.

Caveat: as a former national newspaper reporter, I know only too well that the fast-pace of the newsroom and the pressure of deadlines mean it’s not always possible to get all the interviews you’d like. This is harder for general news reporters reacting to breaking stories than it is for specialists or feature writers who have just the right contacts and/or the time to reflect every angle of the story. But there’s still more than can be done – and much of it is very simple.

Take the language used in news and features.

There’s a huge amount of research shows how media influences public attitudes. One focus group project by Glasgow University a few years ago showed people thought up to 70% of disability benefit claims were fraudulent. People said they came to this conclusion based on articles about ‘scroungers’.

The real figure of fraudulent benefit claims? Just 1 per cent.

Research from Glasgow University on disability in the media

The language used in mainstream media is often problematic. I wince when I read about people “suffering from autism” – “coping with a learning disability” – or being “vulnerable”.

Images used in stories often don’t help.

As a quick – but very unscientific – litmus test – I typed the words “learning disability” into Google’s image search.

This is a flavor of what I found – the most common pictures that came up were the dreadful “headclutcher” stock image that often accompanies articles about learning disability.

Typical results from a Google image search on “learning disability”

These images say, defeat, frustration, confusion, negativity.

This is not how I see my sister, her friends or the learning disabled campaigners I know.

This is more how I see them:

Portrait of Martin Bell, used in my recent Guardian article


This shot is from a story I did a few days ago about Martin, Martin’s 22 and works part-time as a DJ at a local radio station (you can read about him here). Martin also happens to have a moderate learning disability and cerebral palsy.

We need more of this.

An obvious – but nonetheless important – point to make here is about the disability and employment gap. A more diverse workforce in the creative sector will impact on representation. Only 6% of people with learning disabilities work, for example, but around 65% want to (I wrote about this issue in the Guardian recently)

But there is cause for optimism. There is a slow but significant shift in the representation of learning disabled people thanks to the rise in grassroots activism, family campaigning, self-advocacy and the growing empowerment agenda.

Social media is helping spread awareness and spread a different narrative.

This rise in self-advocacy is what led me to develop Made Possible. The book’s aim is to challenge stereotypes; it targets a mainstream readership and introduces readers to learning disabled people in areas like arts, politics and campaigning. Their achievements are impressive regardless of their disability.

The book I’m editing, Made Possible, featured recently in the Guardian

While I’m researching the book, I’m trying to keep three words in mind – attitude, ability, aspiration:

Am I sharing experiences that help shift public attitudes?

Am I reporting people’s abilities, not just their disabilities?

Am I reflecting people’s potential – what do they aspire to achieve, and how can this happen?

And although I’m focusing on positive representation of learning disability, it’s worth stressing that there’s an equally vital need to highlight the challenges.

Challenges like the impact of austerity, for example, or the health inequalities, or the fact that over 3,000 people are still locked away in inappropriate institutional care.

The two go hand – a more authentic portrayal of people’s lives (their qualities, hopes and aspirations) and reporting the inequalities they face.

Because readers are more likely to care about the inequality and support the need to solve it if they feel closer to the real people experiencing that inequality – if they stop seeing learning disabled people as “the other”, or as statistics (as Paul Hunt wrote over 50 years ago..) and as people first.

It’s often said that media should reflect, serve and strengthen society. Which means we have to be more accurate and authentic about how we include and portray a huge section of that society – including my sister – which happens to have a disability.

I nailed it: DJs with disabilities take to the air

Martin Bell, DJ and part-time assistant radio station manager

I met DJ Martin Bell (“not the man in the white suit!)” at the station where he works, Direction Radio in Epsom, Surrey, for a Guardian story published today.

Martin, who has a mild learning disability and cerebral palsy, recently interviewed two engineers from the PWL production company and the experience boosted his confidence. “That was my first interview. I was nervous but I nailed it,” he says. “We recorded it first and then we edited it. I enjoyed coming up with questions.”

He also won the station’s producer of the year award for 2016-17. What would he do if was not at the station? “I wouldn’t know everyone here – they are like my family. I would be at home doing nothing or going out and spending money, but I want to save and become more independent.”

Online station Direction Radio is part of social care provider Surrey Choices’ day service programme. It helps people with physical or learning disabilities to develop skills in broadcast and production.

Some 19 DJs produce and present the shows reflecting all musical genres – from rock to pop, R&B and classical. Station manager Chris Fenn (who does not have a disability) explains that DJs have “a blank canvas” to create their slots, which last between one and three hours, and decide on everything from the jingle to the playlist. “I say to all the guys, ‘You do what you want to do with it’,” says Fenn. “It’s all their choice and that’s why it’s so diverse.”

You can read my report on Martin and his fellow DJs on the Guardian website (all photos from Surrey Choices).

L-R station manager Chris Fenn and DJ Martin Bell
L-R Chris Fenn and presenter Nick Walewski
L-R Martin Bell, Nick Walewski

Made Possible: groundbreaking book hits 100% crowdfunding

Six weeks ago I launched a crowdfunding campaign for Made Possible, a groundbreaking collection of essays on success by high-achieving people with learning disabilities.

The book is inspired by my sister, who has the learning disability fragile x syndrome, as well as by some of the remarkable, succesful people I’ve met and interviewed over the last few years – all of whom happen to have a learning disability.

I’m delighted to say the book is now 100% funded, such has been the fast pace and mounting enthusiasm for the project. More than 200 diverse people and organisations have got behind the book since its launch on 6 September.

Made Possible presents the authentic experiences of a range of professionals who have a learning disability in different areas like theatre, music, art and campaigning. And, for the first time, these high achievers tell their own personal stories of success, in their own words.

It is a book to change the current narratives about learning disabled people, narratives that mean they are talked about as somehow less than human.

Thank you to everyone who’s got involved and backed this book. I can’t wait to start working on it. To find out more, follow the book’s progress and to pre-order a copy, see Made Possible on the Unbound website.

Made Possible hits the midway milestone

This post is based on a piece originally posted on the Unbound website

There has been surge of support for Made Possible, the non-fiction book challenging learning disability stereotypes I’m crowdfunding with the award-winning publisher Unbound. The crowdfunding campaign has been so popular that the anthology is more than halfway to being published – just three weeks after launch. Wow (the background to the book is in this previous post).

I’m so grateful to everyone who’s pre-ordering Made Possible (all supporters get their name printed in the book), as well as sharing its aims and inviting others to get involved. As I write this update, there are 127 people in our Made Possible community, and I’m absolutely delighted that the book’s incredible range of supporters includes learning disability self-advocates, family members, campaigners, professionals, support organisations and people interested in human rights.

If you’re on social media, do follow #MadePossible and connect on Twitter, Facebook, LinkedIn or Instagram – I’d welcome the chance to hear from you if you fancy saying hello.

During Unbound’s recent Anthology Week, which offered a social media focus on the publisher’s essay or story collections, some Made Possible makers tweeted about why they decided to help publish Made Possible:,


Thanks so much to everyone for joining the growing campaign to publish this book; I’m looking forward to seeing what the next week brings.

*Find out more about Made Possible on Unbound, or follow @Saba_Salman and #MadePosible on social media

Prejudice and inadequate support: the situation for minority ethnic children with learning disabilities

Callum and Parmi Dheensa (photo: Parmi Dheensa)

When Parmi Dheensa’s son Callum kissed a classmate on the cheek not long after starting at a special needs primary school, a teacher asked his mother if this was “culturally appropriate”. Dheensa said that as long as the classmate was happy, nothing in her son’s Punjabi heritage forbade such displays of affection.

It is just one example over many years of professionals leaping to incorrect conclusions based on the ethnicity of her severely learning disabled son, who is now 19, says Dheensa. They also assume she does not work and is supported by an extended family when in fact she is a lone parent who works full-time. Dheensa, 43, was once told that her son’s support – he lives at home and is at a special school – was “better than it would be in India”. Fair point maybe, she says, but irrelevant to a British-born, Midlands-based family.

My Guardian article focuses on Parmi’s charity, Include Me Too, which works with 1,500 families a year. It has launched a campaign for the government to review its equality duties in relation to special needs education and support for BAME communities.

The charity has now launched a campaign asking the government to review BAME representation in government decision-making (existing involvement is, says Dheensa, “tokenistic”) and a new disability and equality strategy to ensure families get better support. The criticism is that professionals do not fully involve parents in reviews of the support they require, or in drawing up education, health and care plans, and parents or carer forums are predominately white British.

Read the article on the Guardian website.

New report demands more support for vulnerable children

Families at a Spurgeons’ children’s centre, Aylesbury, Buckinghamshire (photo: Bronac McNeill)
Guest post by Ross Hendry, chief executive of Spurgeons Children’s Charity

New research, which we launch today, paints a picture of far too many young families struggling.

Parents with children under the age of 18 are increasingly anxious, according to Spurgeons’ Parent Report, and many feel that there is little support available.

The research shows half of parents worry their children have low self-esteem or are unhappy (46%) or are being bullied (46%)*; whilst 42% of parents think there is little to no support available from statutory, community or voluntary services to help with family challenges.

And it is many of the most vulnerable who are struggling the most. The ones who cannot or do not have a strong, stable and supportive network of family and friends to turn to. These are the families we work with, day in, day out – their children are among the 4 million living in poverty in the UK today. They are the families for whom support seems very distant and hard to attain just when their needs seem to be increasing.

What’s important is that families get the support they need when they need it. And that’s where charities like ours come in. Spurgeons Children’s Charity is driven by its mission to improve the lives of families and children who are struggling to cope; and to see every child given the chance of a hope filled future.

It is 150 years since we were first founded, but we still work at the heart of communities to improve the life chances of some of the most vulnerable children and families in England. Our focus is supporting families who struggle to support themselves through intervention and help that centres on the child.

The reality is, despite the immense wealth and opportunities for social mobility, life for some families is as tough today as it was when we were first established. Inequality today may look different; we may know more about causes and solutions; we may spend more time talking and writing about it; but it is still an enduring social and economic scar on our society.

We offer a range of different services across the country. For example, our 23 children’s centres support parents with young children to access the help they need, ensuring poverty and deprivation don’t become barriers to a better future. We work with local partners in communities with high levels of deprivation across the UK, supporting parents and their children from pre-natal stage up to the age of five.

When parents need to develop new strategies for dealing with issues; or they feel they maybe aren’t coping as well as they could, our support worker teams are there. Sometimes just to listen; but often to provide practical support and advice too. There are a range of parenting courses; opportunities to stay and play and a chance to meet and talk with other parents.

The chance to access peer to peer support can be invaluable and a life line for many parents who often feel alone. This is true for both mums and dads and we’re keen to recognise the important roles fathers play in their children’s lives. Our Saturdads project, which started in 2009 and worked with 89 dads last year alone, helps fathers develop stronger, positive relationships; build peer support networks; and generally build their confidence as a parent. Too often public funded services are portrayed as places of dependency when the reality is a timely intervention can be the route to flourishing, maturity and development for parents and children.

Spurgeons works to support families (photo: Bronac McNeill)

The Parent Report we publish today gives us an opportunity to compare the views of the wider parent population to our own insight. From parent feedback at our services, through to safeguarding reporting, we are able to draw out comparisons and identity some common themes. What we do know from the work taking place is that it’s not always easy for families to reach out.

All too often, parents are afraid to engage. For whatever reason, whether its concern over how they will be perceived, or feeling like they have somehow failed, we’re often the last place they turn. It’s not uncommon for us to be told by parents that they wished they’d reached out sooner. But the question we need to ask is ‘why aren’t they?’

We need our services, and those offered by others like us – from government, charities, schools and GPs – to be recognised as the safe and reassuring places we believe them to be. Where parents can take their children and be free from judgement at a time in their life when they need it most.

It’s only fair that we all accept some responsibility with this – if parents don’t feel that they can access the support available, what can we do differently to help them on their way? More awareness maybe; more accessibility for the isolated and hard to reach groups most definitely; but maybe it’s more than that.

In a world where they are so many expectations and pressures, living up to a perfect ideal can make a tough job even harder. From our part, we want to ensure there is always someone there to support families – especially those in greatest need – with good information, advice and meaningful support.

About the research
All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 1,842 GB parents with children under 18 years of age. Fieldwork was undertaken between 21st – 27 April 2017. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+).
* When asked about the three issues they are most concerned about for their children, either now or in the future.

Election: voting support for people with learning disabilities

Campaigner and self-advocate Gary Bourlet on politicians

The Conservatives’ manifesto pledges on social care have been both controversial and muddled, but at least the issue of support (and how we pay for it) is finally a subject for mainstream national debate. Campaigners have long argued that plans to fix the broken social care system must be high on the political agenda, but many of the people who rely on it most are rarely wooed by politicians – as the above quote from Gary Bourlet makes clear.

And while more than a million people with a learning disability are entitled to vote on June 8, according to social care provider Dimensions, only around 10% of people with learning disabilities vote. This is generally, as campaigner Gary Bourlet once told me about politicians, because “they don’t make it accessible to us … they talk in jargon.”

The links below offer accessible resources and general voting guides to support people to vote and find out more about election issues (I’ll update this roundup as – hopefully – more is added).

The manifestos (to be updated):
Liberal Democrats – easy read version available pdf

Labour – accessible formats here.

Conservatives – easy read and accessible formats manifestos here.

The Green Party – “All manifestos and alternative formats” here, including easy read, braille and audio.

There is no mention of how to get an accessible version of the UKIP manifesto.

Campaign for accessible manifestos from Mencap: “We want people with a learning disability to feel part of this election. But we need your help.”

Guides to voting:
Easy read guide to voting in the general election published by the Electoral Commission and Mencap – pdf: “People with a learning disability have as much right to vote as anyone else. Don’t let anyone else tell you different.” (See also this pdf from the Electoral Commission on disabled people’s voting rights).

Easy read guide to voting from Inclusion North: “The guide has lots of links to lots of information about how to vote.”

Love Your Vote is “a campaign run by Dimensions to support people with learning disabilities and autism to understand and exercise their right to vote.”

Every Vote Counts from United Response is “aimed specifically at making the process easier to understand for people with learning disabilities and those that support them”.

Video guide to voting from Brandon Trust is a video guide that “explains how things work in the UK, what you need to do to register to vote, and the different ways you can vote”.

Link to a short film made by BTM’s learning disability group “encouraging everyone to register to vote by May 22”

Easy read summary of social care issues that all parties should consider, from VODG: “Our General Election statement sets out the issues VODG wants all political parties to consider during the General Election 2017 campaign.”

Event at 10.30am Sat 3 June University of East Anglia: “Learning Disability nursing students at the School of Health Sciences have organised an information day for people with learning disabilities so that they can find out more about voting in the upcoming general election…The political parties will be represented at this drop-in session and will provide accessible information and discuss their policies with people with learning disabilities.” Also see the related Facebook group.

RNIB on voting and elections for the visually impaired: “All voters have a right to vote independently and in secret, and local authorities have to ensure that polling stations are accessible to people with sight loss.”

Scope’s guide to accessible voting: “Accessible voting..Make sure your voice is heard this June.”

An “unbiased, easy read guide to party manifestos” from United Response

On social media:
You can also follow the hashtags #LoveYourVote #EveryVoteCounts #LDvote #EasyReadElection #LDVote2017 on Twitter.

* This post was updated on Mon 22 May with information on the University of East Anglia event, Green Party manifesto and Conservative Party manifesto, on Fri 26 May with RNIB info and Scope’s voting guide and on Fri 2 June with the United Response resource.

Related video: Kathy Mohan angrily asks what Theresa May intends to do to help people with mental health problems and learning disabilities.