**Sheila Hollins : " People with learning disabilities must be put at the centre of their care."
The crossbench peer used pictures to communicate with her learning disabled son - and the experience led to a pioneering organisation.**
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Sheila Hollins is one of the UK’s foremost authorities on learning disability and mental health. But the crossbench peer 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.”
He is part of a theatre company for actors with learning disabilities and, interviewed with his mother, says he relaxes with “something to eat with my girlfriend and watching a film”. His favourite film is The Rewrite, which, he explains, “ I was in with Hugh Grant”. His friendship with Grant, who got him the film role, came after the actor contacted the Hollins family for a documentary about press intrusion (the family experienced unwanted press attention when Nigel’s sister was paralysed in 2005 after a knife attack).
Hollins championed disability awareness through an employment scheme as professor of the psychiatry of disability at St George’s, University of London. She employed five learning disabled people over 25 years to teach medical students how to communicate better. (In the UK, just 5.8% of people with a learning disability are in paid work, compared with 74% of non-disabled people.) “In my department, the medical students weren’t there to impress the professor, they had to talk in a way that people with learning disabilities could understand,” she explains.
Despite an National Audit Office report in March that criticised the government’s lacklustre strategy to get a million more disabled people into work by 2027, Hollins, a former government adviser on learning disability and autism when New Labour’s Alan Milburn was health secretary, accepted a grant from the Department for Work and Pensions to create four Beyond Words books about finding and keeping a job. “The project is helping Beyond Words and jobcentres to refine a support programme to encourage and steer more people with learning disabilities into employment – whether voluntary, part or full-time”, she explains.
What does she think of the state of support for people with learning disabilities and autism today?
Hollins says returning people from inpatient units to communities “will never work until people understand it’s not about a building and a staff team, or rotas and procedures, but about putting somebody like Nigel at the centre of the plans”. Professionals should understand that what people need to live their life is to belong [in communities], she states. But she is all too aware that progress is slow
The healthcare regulator, the Care Quality Commission, recently published a report on the long-term segregation of people with learning disabilities in mental health units; the NHS released its annual review of the premature deaths of learning disabled people; and BBC’s Panorama exposed abuse at Whorlton Hall, an NHS-funded, privately run hospital for learning disabled and autistic people in County Durham.
The latest scandal came eight years after a government promise to shut institutions such as Whorlton Hall and move people back to communities following similar abuse exposed by Panorama at Winterbourne View near Bristol.
And the latest NHS-commissioned review of mortality rates, published last month, finds that people with learning disabilities are disproportionately likely to die in hospital.
A lot more needs to be done to tackle the lack of parity in healthcare for learning disabled people, she says. When her son was attacked by two men in London 20 years ago, doctors were reluctant to operate on his fractured cheekbone “because [they said] it’s only cosmetic”, Hollins recalls.
“It was discrimination” She argued for an operation. Since then, Hollins says attitudes have improved, not least because more people live in communities. But a big challenge is still the gulf between the health and care systems that learning disabled people rely on: “We need a continuum – social care is integral to health.”
What hopes does she have for her son, who inspired Beyond Words? “I hope Nigel will be so embedded in his community that there will always be people who’ll look out for him, love him and care for him after I’m no longer here. That’s what every parent wants,” she replies.
Curriculum vitae
Age: 72.
Lives: Surrey.
Family: Married, four adult children.
Education: Notre Dame high school, Sheffield; St Thomas’ hospital medical school, London (now part of King’s College London); Postgraduate psychiatry training, Westminster hospital, London.
Career: 1989-present: founder, Beyond Words; 2011-present: emeritus professor of the psychiatry of disability, St George’s; senior policy adviser, learning disability and autism, Department of Health; 1990-2011: professor of the psychiatry of disability, St George’s, University of London; 1981-1990: consultant psychiatrist and senior lecturer, St George’s; 1971-74: GP, Balham, south London.
Public life: President, Royal College of Occupational Therapists; former president, British Medical Association; former president, Royal College of Psychiatrists; former member of the Pontifical Commission for the Protection of Minors; patron, Respond; patron, Living and Dying Well; 2010 appointed crossbench life peer (Baroness Hollins of Wimbledon and Grenoside).
Awards and honours include: Honorary chair in the department of theology and religion, University of Durham, honorary doctorates from the universities of Durham (Letters), London (Divinity), Sheffield (Medicine), Bath (Laws) and Worcester (Science) and the Australian Catholic University in Melbourne (Doctor of the University) as well as the Bronze medal of the Institute of St Martin in Florence for her work in the disability field.
Interests: Oil painting, listening to music, long-distance walking – all with family.