Where next for learning disabled people after discredited units close?

Ben Davis, 20, was sectioned and admitted to an assessment and treatment unit (ATU) miles from his family home in south-west England. After eight months in the NHS-run unit in the south-east, Davis, who has autism and complex needs, was moved to a newly built flat near to his family following a campaign to get him out by his mother. He and his family hoped it would be a fresh start.

But, last week, after less than two months in his new one-bedroom flat, the support he was receiving broke down. The autistic young man, for whom stability and routine are vital, will now have to move again, this time into temporary accommodation while NHS and local authority care commissioners organise the next option.

His mother, Catherine Davis, says one problem with the flat was that it was more like hospital than home, as reflected in her son’s initial reaction to the property. “He said, ‘it looks just like the unit’,” she says. On social media, she offers a stark summary of the situation: “They fail him, send him miles away, drug him, send him back damaged after eight months, to a mini-institution with pretty curtains”.

Davis, whose campaign to release her son from the assessment and treatment unit included a petition of more than 15,000 signatures, warns of “a steep learning curve” for care commissioners organising support for people after discharge from such units.

In her son’s case, she says, commissioners rejected his wish for a move back to his family home, deeming it unsustainable. She describes poor transition between the unit and flat, no recognition of the trauma caused by being locked away and the presence of fire alarms in the flat that sparked unsettling memories of the secure hospital unit. New-build glitches meant the alarms sounded frequently at night, fuelling the young man’s distress and panic-stricken calls home.

The government promised four years ago to move people from treatment and assessment units following BBC Panorama’s exposure of abuse at the privately run Winterbourne View. The preventable death of 18-year-old Connor Sparrowhawk, who drowned in a Southern Health trust unit in Oxfordshire three years ago, and the subsequent Justice for LB campaign, further fuelled demands for action and accountability over the treatment of learning disabled people. In October, NHS England and council leaders set out a £45m plan to close England’s last NHS hospital for people with learning disabilities, plus up to half the 2,600 beds in the units. But according to the latest government figures, in June more than 2,500 people were still languishing in such units. Family-led research published today highlights the problems for people, like Davis, who are leaving these facilities. The report, Avoiding Crisis – A Parent Survey on Support Needed, is published by parent-led network Bringing Us Together and support charity Respond. It includes the views of 29 families whose sons or daughters are in or have recently left ATUs and is part-funded by NHS England,and also involves family-led campaigners Seven Days of Action, who raise awareness of people stuck in these institutional settings.

It acknowledges “the success stories of young people coming back into their communities and being close to home”. But it adds: “It has become increasingly apparent that this desirable outcome is often very difficult to achieve.” And it warns that the precarious state of social care funding could affect the development of new, community-based support.

An accompanying but separate survey of 88 families in 54 areas across England that accompanies the report reveals inconsistencies in advice for people during crises, such as being sectioned. Nearly half the families say they were not given advice on where to get help. This is despite the Care Act in 2014 obliging councils to provide information so people can make decisions on care.

Other problems include hostile relationships between families and the “responsible clinician” – psychiatrists authorising admission and discharge. In addition, parents feel sidelined by professionals. They worry that there is no recognition of possible post-traumatic stress disorder after time in units. One relative suggests: “They go in with autism and come out with personality changes, mental health issues, poor physical health issues, weight issues, no education and with post-traumatic stress disorder.”

The report underlines how people are often discharged without the person-centred planning designed to boost choice in support. Also, as in Davis’s case, their new accommodation feels eerily similar to the hospital. A parent comments: “Individuals returning to the community are given a flat which is often impersonal, with little thought given to their sensory needs. Bare walls, windows you can’t see out of.”

Katie Clarke, the executive director of Bringing Us Together, says: “There’s no pathway for parents and families, there’s a lack of support immediately on discharge … people are desperate for information and advice.”

Solutions in the report include ensuring that transition plans are thorough, that independent advocates are available to support the family at meetings, and that there are properly pooled health and council budgets to enable quicker discharge from health-funded units into council-funded community-based housing.

Mark Griffiths, who has Asperger’s, moved back to his family home in the north-east after a mental health crisis in 2010 led to several months in a unit 200 miles away. His experience, although arduous, seems like a comparative success story. Care commissioners proposed transferring Griffiths to residential care but his mother, Hazel, with the help of two specialist solicitors, won the argument that he should be moved back home. Initial support from a home-based care provider failed as staff changes undermined Griffiths’ need for routine.

Hazel Griffiths is now her 31-year-old son’s full-time carer, with a charity offering four hours support a week. She says: “We managed to find professionals who were sincere – it took a long time to trust again.” Griffiths works with her local NHS trust, Tees, Esk and Wear Valleys, encouraging people, families and professionals to collaborate in care. She acknowledges this is unusual. “The system seems so disintegrated,” she says.

Closer working between health and councils is vital, says Gary Bourlet, founder of self-advocacy group Learning Disability England. “It’s not just health and social care but also social housing, [and money should go] into one pot.” He adds of professionals: “They’re not listening to people and not giving them choices.” Bourlet suggests that funding from closed units be spent on specialist learning disability nurses.

An advocacy-led approach would create emotional and practical support for people leaving units, says Respond chief executive Noelle Blackman, who worked on the research.

Bringing us Together and Respond run Justice Together, a project uniting parents and professionals wanting decent support for families in crisis. Blackman suggests a helpline where specialist advisers offer advice on discharge and transfer and offer counselling sessions. Advisers can suggest human rights solicitors, local advocates or independent specialists to create person-centred plans for an active life in people’s home areas. Families can, says Blackman, dip in and out of this “justice circle” as needed: “We’d give them a path to follow when everything feels so overwhelming.”

While Blackman welcomes the national plan to close assessment and treatment facilities, she warns: “There’s good stuff being written … but the reality – translating it on to the ground – is miles away.”

Dominic Slowie, NHS England’s national clinical director for learning disability, says the momentum on transfer is growing. He anticipates change “over the coming months and years” as areas implement plans for community-based housing, care and advocacy. Slowie adds: “It is crucial that the views of patients and families with lived experience of services are central to the continued development of these plans by councils and local NHS bodies, and of course we will continue to engage nationally with organisations like Bringing Us Together to ensure this is the case.”

Back in the south-west, Ben Davis is in limbo. Such words offer little reassurance for Catherine Davis, who desperately worries about her son’s future. As she says, “just getting someone out of an assessment and treatment unit is not where it ends”.

Some names and details have been changed