Cllr Gavin Harding is a trailblazer who has devoted his life to improving the rights of learning disabled people, and their care. He has achieved this through his work for NHS England, his contributions to Government plans and programmes, and as a local politician.
The MJ magazine just published an interview with Gavin Harding about his life, work and his words in my book Made Possible
Journalist Ann McGuaran writes of Gavin: “In 2011 he became the first person with a learning disability to be elected as a Labour councillor in his home town of Selby in Yorkshire. Four years later he became the UK’s first mayor with learning disabilities, and in that same year he was awarded an MBE for his work for services to people with learning disabilities.
“He helped the Government draw up a three-year plan on learning disability, Valuing People Now, in 2009. In 2014 he became co-chair of the Transforming Care programme to improve standards of care for people with learning disabilities.
“Cllr Harding is one of the people featured in a new book highlighting stories of success by people with learning disabilities – in their own words. In Made Possible, he is one of eight individuals who present their authentic experiences, and show how people can make invaluable contributions to society when their potential is acknowledged and supported by those around them. Made Possible is edited by social affairs journalist Saba Salman, who is a trustee of the charity Sibs, and has a younger sister with a learning disability.”
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.
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.”
Guest post by Tracy Fishwick, chief executive of Transform Lives
Leeds Community Homes is striving for a people-powered community housing revolution, placing the new organisation at the cutting edge of housing practice.
The not-for-profit group has raised £360,000 to invest in 16 permanently affordable homes through community shares (a type of share capital called ‘withdrawable shares’ issued by co-operatives or community benefit societies). With the first tenants due to move in by next April, the organisation’s #peoplepoweredhomes campaign is an innovative way to create housing developed by local people, to meet the housing needs of local people. The project wants to create 1,000 affordable homes over the next decade.
People-focused housing solutions are at the heart of the People’s Powerhouse event taking place next month. The housing group’s work in Leeds is the kind of positive story of local change that we hope will inspire delegates to recreate similar projects in their own communities. More good practice like this is vital at a time of chronic housing shortage, with housebuilding falling almost 100,000 homes per year short of achieving the government’s ambition.
You may have read about the People’s Powerhouse which was launched in February and originally billed in the press as “a rival ‘northern powerhouse’ conference to one that advertised 15 male speakers but no women and just 13 of all 98 listed speakers were women”.
Leeds Community Homes, Plus Dane Housing and my own company, Transform Lives, are just some of the organisations taking part. We hope the People’s Powerhouse will help create a dialogue about inclusive, good growth, and its potential to transform communities and lives across the North of England.
Other work worth replicating includes Give Get Go, which Transform Lives collaborates on with a group of housing organisations. The initiative supports social housing tenants into work – connecting unemployed people to employers through volunteering and mentoring, growing skills and confidence and creating jobs. Key to the project’s success is bringing civic institutions and leaders together for the first time to work collaboratively in Liverpool, including the University of Liverpool, Everton FC and the National Trust.
We also work with Plus Dane Housing on its Waves of Hope Big Lottery programme, which aims to tackle homelessness and other complex barriers to work. In just two years, the project has supported 236 people, 83% of whom say their rough sleeping has been reduced. And 67% report a reduction in substance misuse. Both Plus Dane Housing and our other partner, the University of Liverpool, will be showcasing this work at the People’s Powerhouse, underlining the difference we can make when we find good ways of working collaboratively and locally.
Our hope is that we will build a long-term movement for change that supports good and inclusive growth in the North with a particular focus on how people are the key to growth. The aim is to include all sectors and sections of the community, harnessing the combined skills and leverage of the public sector, voluntary, community, civic leaders and business.
As Lord Victor Adebowale, chairman of Social Enterprise UK and chief executive of social enterprise Turning Point, says: “’People’s Powerhouse’ perfectly reflects our vision for economic investment in the North of England.” Social enterprises often find innovative solutions to social issues and as Lord Victor, a People’s Powerhouse keynote speaker, adds: “We cannot allow anyone to be left behind. Investment in the North must be inclusive and must be used to support communities as well as businesses, adding value to the lives of real people.”
* The People’s Powerhouse event takes place on Wednesday 12 July from 10am-4pm at Doncaster Rovers Football Ground. For more information and to register see the website. Discounts are available including for young people and for small enterprises and charities.
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.
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 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.
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.
This was the context to a recent interview with Gareth Parry, the chief executive of employment organisation Remploy, which has £50m of contracts from central and local government to help disabled people get jobs or support them back into work.
Parry, who worked his way up Remploy after starting as a trainee almost 30 years ago, has depression, something that he says gives him a more personal insight into his job running employment support organisation (“It reinforced the importance of organisations like Remploy; work gave me routine, structure, focus, when everything else in my life was in chaos”).
He is a forthright speaker about how his personal experience influences his role at the helm of an organisation aiming to support people with mental health issues; he wants more senior executives to be open about mental ill-health, for example.
The organisation, however, has its critics. While Remploy was launched by the postwar government in 1945 to give disabled second world war veterans sheltered employment, the last factories closed in 2013 in line with the idea that mainstream employment was preferable to segregated jobs. Yet many felt the closures abandoned disadvantaged people.
More recently, in April 2015, Remploy was outsourced to a joint venture between US-born international outsourcing giant Maximus – which has come under fire as the provider of the Department for Work and Pensions’ controversial “fit for work” tests – and Remploy’s employees, who have a 30% stake in the business. Critics say that being owned by Maximus undermines Remploy’s status as a champion of disabled people.
Parry rejects such suggestions: “I can understand why people would see it that way, but we have a strong social conscience, the employee ownership keeps us focused on that, the profits don’t go overseas to America, they go back into the [Remploy] business.”
Longer term, Parry believes Remploy could take on international work, like advising other countries on closing sheltered factories. He adds: “Our mission around equality in the workplace has always been and is within the confines of the UK, but if we want to make a real difference in society in the UK, the opportunity we have now is to say ‘why stop there?’” Future issues in employment support, he adds, include sustaining an ageing workforce, with help for issues like dementia in the workplace and other age-related conditions.
In terms of other changes, Parry’s words on the rise of online support (as opposed to face to face advice) reflect a general trend towards more online and digital support: “I’m not suggesting online will replace face-to-face services, but the idea of giving the power of choice to the individual as to how they access services is meaningful”.
Remploy is almost unrecognisable in terms of its remit, ownership structure and operations since its inception more than 70 years ago; as the government and local government contracts on which it once relied are dwindling, it will be interesting to see where the next few years take Remploy – and, most importantly, those it helps.
The graduate, who is an academic high-flyer, starts a trainee solicitor role later this year. He believes a law career will enable him to create practical change, but says combining law with campaigning is crucial. As he explains: “There is only so far legislation can go…you need to be winning hearts and minds to get change.” For his views on work and disability, see the full interview here.
He credits his family for their supportive role in his campaigning and he speaks powerfully about how his younger brother defended him against school bullies (“It was words like ‘retard’”). Jonathan stressed that it was in fact his brother who found it harder to deal with the verbal abuse: “I developed a thick skin, people used to tease me, but I always felt there would always be people like that and it was best not to focus on them. I came out in a better state than my brother, because I could shut it out and carry on – but for people who love you, it [trying to rise above verbal abuse directed at a relative] can be harder.”
An autism diagnosis at nine was, he says, useful in understanding his needs, but some of his parents’ friends reacted with sympathy. “The instant reaction was ‘I’m so sorry’. My mum would say ‘why?’ She said ‘my son hasn’t become autistic because of this diagnosis – it lets me understand it [autism] better; he’s always been my boy and is the same person he always was’.”
What struck me about Jonathan’s work – aside from the huge amount of awareness-raising at such a young age – is that he works on a range of diversity issues; along with autism, he raises awareness of mental health issues and LGBT equality. For example, he’s launching a best practice autism toolkit with the Commonwealth disability working group in April and hosting a related Commonwealth Day event in March.
He is also involved in promoting LGBT rights as co-founder of professional network the London Bisexual Network, challenging the idea that an autistic person “is not a sexual being because you are somehow ‘other’”. He adds of his campaigning on autism as well as LGBT issues: “People often think with autism you have to be interested in one thing and this means that you are great in one area and terrible at everything else.”
He also works to educate young people about domestic violence. He explains: “When I was child and I saw something that was wrong, I wanted to correct it and when I see something that is blatant injustice I just want to do what I can to help…[with domestic violence campaigning] I know what is is like to have a stable family, family that loves you, and I want others to be able to experience that.”
In fact, his broad range of campaigning interests reflects the change in attitudes which he is trying to achieve through his work: “People often think with autism you have to be interested in one thing and this means that you are great in one area and terrible at everything else.
Tech entrepreneur Alexandre Mars is known in his native France as the French Bill Gates. Having made his fortune creating and selling tech startups, Mars, 41, founded Epic Foundation two years ago. In an interview for The Guardian, Mars explains how his orgnaisation aims to encourage tech-savvy investors to donate to children’s and young people’s charities it has selected.
Mars believes a debate is needed “to explore opportunities and strategies for increasing giving”. At at time when trust in charities is at an all-time low following criticism of some traditional fundraising practices, new ways of engaging donors through technology is surely needed. Such challenges are expected to feature in next year’s House of Lords select committee report on charities, with its focus on digital innovation and financial sustainability.
How does he define the role of philanthropists versus the state? “We need policymakers, we need strong leaders … [but] they don’t have enough money, so where is it [the money]? It’s with the corporate world most of the time, so how can we [business] just step up?”
Ben was admitted to an assessment and treatment unit (ATU) miles from his home after his first supported living placement broke down. After the ATU, he moved to a newly built flat nearer his family but that support has now also broken down. He has to move again, into temporary accommodation, while care commissioners organise the next option.
When I interviewed Ben’s mother, Catherine, she was both eloquent and outspoken as she described how the human rights of her son were being eroded after he was repeatedly failed by the very system designed to support him.
This is where we are today. Upwards of 2,500 people stuck in inappropriate, discredited care, and the strong will to get them out is being undermined by the lack of a clear way.
And meanwhile, many parents – every single one of whom has spent years relentlessly fighting for the right support – feel they cannot always openly challenge the authorities, such is the fragile and often hostile relationship between families and commissioners of care.
* Names and details in the article have been changed
Four years after the abuse of people with learning disabilities at Winterbourne View (and 30 years after the start of care in the community and 20 years after the influential Mansell Report), NHS England recently unveiled a £45m plan to move people out of institutional care and back into communities. “Homes not hospitals”, is the laudable vision.
This is where grand ambition contrasts with grim actuality, as I explain in a piece in today’s Guardian.
A report leaked to the BBC and sparked by the preventable death of 18-year-old Connor Sparrowhawk in a Southern Health Trust inpatient unit, revealed that the trust failed to investigate some 1,000 deaths in its care over a four year period.
Then yesterday, the Learning Disability Census Report 2015 from the Health and Social Care Information Centre revealed there 3,000 people in inpatient units – 3,500 if you count those “unreported” in the figures (more on this here from Mencap and the Challenging Behaviour Foundation, and the HSCIC explains the discrepancy under its editors’ note number eight here).
Déjà vu? In 2013, according to the HSCIC, there were also around 3,000 people in inpatient units (in fact half those in units today, were also there for the 2013 headcount). And a previous £2.86m government-funded improvement programme from the Local Government Association and NHS England tried but failed to move everyone out of such units by 1 June 2014.
The census, established in response to the abuse at Winterbourne View, also shows the average length of patients’ stay is five years, there is heavy use of antipsychotic medication (almost three-quarters of people – despite the fact that less than a third have a diagnosed psychotic disorder) and more than half self-harm, have accidents or suffer assault, restraint or seclusion. Around a fifth of all inpatients are at least 100km from home.
Reading these stark facts would lead most of us to conclude that if you have a learning disability, you’re less likely to be cared for properly in life, unlikely to have your premature death investigated thoroughly – but if you’re lucky, you might be included in a census (depending on the data collection methodology etc etc).
I’m more pragmatic than negative. My sister, Raana, who has a learning disability, leads a busy, active life where her choice is central to her daily life. There are many organisations out there doing great stuff. I’ve met people who have moved from institutions into supported housing in towns and cities, with the help of truly brilliant, hardworking care staff. I’ve spoken to families who feel involved in shaping the care of their son, daughter or sibling, some with very complex needs. I’ve read – and written – reports outlining good practice in ensuring people get out of these places. While there’s still a postcode lottery at play, “we know what good looks like”, as stressed by many social care experts I speak to.
So as I began writing today’s Guardian piece, I’d expected a narrative of cautious optimism. As I came to finishing it, the Mazars report was leaked and new figures showed little change in the number of people in inpatient units, hence the headline above this post.
The report into Southern Health by auditors Mazars – which as I write, is still not published, despite making headlines and being debated in parliament – has renewed concerns over institutional disablism, led to calls for a national inquiry and, as this piece by Andy McNicoll underlines, provoked widespread criticism over the response of the trust and its chief executive (for links to some powerful blogging and commentary, search Twitter for #mazars or #JusticeforLB).
Katherine Runswick-Cole, senior research fellow at Manchester Metroplitan University’s research institute for health and social change, suggests that until the dehumanisation of people with learning disabilities ends, inadequate care – irrespective of care setting – may linger (related issues include, for example, a hospital listing a patient’s learning disability among reasons for sticking a “do not resuscitate” order on his file).
Recent cases in supported living and residential care – non-institutional environments – reflect this concern.
In January, Thomas Rawnsley’s family will attend a pre-inquest meeting into his death. The 20-year-old, who had Down’s syndrome and autism, was taken to hospital from a residential care home in Sheffield earlier this year, but died two days later.
His mother, Paula, says: “Thomas had great empathy and compassion, he always wanted to make people laugh. If people had taken time to get to know him they would’ve found that out.”
Dismissive attitudes towards people with learning disabilities extend to their families. As Deborah Coles, director of Inquest, has said, the Mazars report only came about “because of the tireless fight for the truth by the family of Connor Sparrowhawk”.
Meanwhile, back with the grand vision – well meaning and welcome as it is – NHS England says it is working closely with regulator the Care Quality Commission to prevent any new assessment and treatment institutions from being created. But in yet more ambition vs. actuality, the Public Accounts Committee has just criticised the CQC for being ineffective.
Connor Sparrowhawk’s mother Sara Ryan, a senior researcher and autism specialist at Oxford University’s Nuffield department of primary care health sciences, says that the Mazars report “confirms that learning disabled people don’t count in life or death” (see more on this on Sara’s blog). And this post by Chris Hatton suggests some “required reading for anyone wanting to understand the issues involved in premature deaths of people with learning disabilities”.
Hard to disagree with the conclusion of Katherine Runswick-Cole who said when I interviewed her, “the pattern is abuse, inquiry, report, repeat”.