Where next for learning disabled people after discredited units close? | Saba Salman

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.

Related: Why did Connor Sparrowhawk die in a specialist NHS unit? | Saba Salman

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.

Related: People with learning disabilities are still not recognised as fully human | Sara Ryan

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

Where next for learning disabled people after discredited units close? | Saba Salman

Why did Connor Sparrowhawk die in a specialist NHS unit? | Saba Salman

A year in the past, 18-year-previous Connor Sparrowhawk was admitted to Slade Residence, an NHS assessment and remedy unit in Oxfordshire.

Sparrowhawk, who had autism, a finding out disability and epilepsy, lived at house and went to a special college, but was unsettled and agitated. His family members imagined assessment at the 7-bed unit run by Southern Well being NHS basis believe in would help secure the right assistance for the teenager.

Instead, significantly less than four months later on on 4 July 2013, he was located unconscious in the bath at Slade Property and died. A postmortem showed he had drowned, almost certainly as a outcome of an epileptic seizure.

The trust at first attributed his death to normal leads to, but an independent investigation demanded by Sparrowhawk’s family concluded his death could have been prevented.

Its damning report, published last month, states that Sparrowhawk’s epilepsy was not appropriately assessed or managed. It even more discovered there was no sufficient supervision at bath instances, no loved ones involvement in his evaluation and care, no powerful clinical leadership and no proper attempts to engage the teenager in routines.

Sparrowhawk’s mother, Sara Ryan, a senior researcher and autism specialist at Oxford University’s Nuffield department of principal care health sciences, says: “We thought it [the unit] was risk-free. Connor lived at house with us for 18 years – 107 days in that place and he was gone.”

A social media campaign, Justice for LB (Sparrowhawk’s nickname was Laughing Boy), launches its 107 Days drive to raise awareness each day till the anniversary of his death.

Slade Property is now closed, its individuals moved to option care, and disciplinary hearings for seven workers are due this month. An inquest is expected and healthcare regulator Monitor is investigating the believe in. In November the Care Quality Commission (CQC) failed Slade Property for all 10 quality and safety requirements. CQC inspectors have also identified failings at two of the trust’s other amenities, an Oxfordshire care residence for people with finding out disabilities and a psychological well being unit in Southampton.

In response to campaigners’ calls for the trust’s chief executive, Katrina Percy, to resign, she replies: “I do not see that it truly is acceptable that I would resign.” Percy, who apologised in a statement in response to the report, told the Guardian: “[Connor"s death] is utterly tragic and it was preventable.” She adds: “We do absolutely every thing in our energy to safeguard and give the highest top quality of care that we possibly can … but what we need is a culture the place folks are in a position to be open when items never go as effectively as they probably could.”

Sparrowhawk’s death has reignited debate about assessment and treatment method units. Winterbourne View was a privately run unit the place the abuse of individuals with learning disabilities was exposed by BBC’s Panorama in 2011. Soon after the outcry more than the abuse in the south Gloucestershire unit, a £2.86m government-funded improvement programme was launched by the Regional Government Association and NHS England. Its aim was to move absolutely everyone out of this kind of units by 1 June 2014.

Nevertheless these days, about 3,200 people with understanding disabilities and autism are nevertheless in personal or NHS-run settings like Winterbourne See, according to government figures. Far more than 60% have been there above a 12 months and 20% for a lot more than five years. So, why are they nonetheless in such widespread use when they are broadly criticised as warehouses that supply wholly inadequate support at a weekly cost of about £3,500 per patient?

Commissioners of providers and clinicians bemoan the lack of neighborhood-based mostly options, but service suppliers for individuals with studying disabilities propose the commissioners are ignorant of, or can’t afford, existing options.

The improvement programme’s new director, Bill Mumford – who is chief executive of finding out disability charity MacIntyre – describes the June deadline as “an aspirational target and not thought through”. He adds: “I am not expecting a large fall in numbers.” Alternatively, he says he is trying to advertise excellent-practice choices to assessment and treatment units, and supporting commissioners to use these options.

The lack of pooled funding amongst regional authorities and NHS England undermines moves to get men and women out of units simply because income-strapped councils are forced to select up the bill for neighborhood provision. Mumford says: “The challenge is for clinicians and commissioners, they are the crucial choice-makers, we can connect them up, show them what can be completed, preserve the pressure on them.”

Care minister, Norman Lamb, says: “We assume health and care commissioners to function together to transform care and support. We will publish standard progress reviews, which will make extremely clear which commissioners are failing to make the improvements we are committed to.”

However, neighborhood-primarily based very best practice is nevertheless the exception. Despite the closure of a lot of NHS lengthy-stay hospitals in the 1980s, high-priced, harmful “dumping grounds” nonetheless exist. Considering that 1993′s influential Mansell Report, policy and investigation has quite a few white papers and inquiries have advocated greater care for people with complicated demands, from the 2001 report Valuing People, to the 2006 Our Overall health, Our Care, Our Say white paper, and the confidential inquiry into the deaths of folks with finding out disabilities. But in spite of the intentions and proof, the pace of alter for people with complex requirements is slow.

There is an additional reason for slow progress. The Department of Health’s Winterbourne View report, noted: “Failure to listen to people with demanding behaviour and their families [is] a typical expertise and totally unacceptable”. Sara Ryan says of Slade Residence: “It was as if it was an imposition that we visited every single day.”

A senior figure at a national care supplier, who declined to be named, says: “There is an endemic difficulty in the sector of household bashing, it is ‘the family members are difficult and a pain’ … Mother and father are the experts on their son or daughter – and we must tap into that knowledge.”

Jenny Morris is a advisor who advised the Office for Disability Issues below the earlier government. She believes public perceptions of people with studying disabilities are partly responsible for inadequate progress. “There are unfavorable attitudes in society in common towards individuals with understanding disabilities, plus ignorance and lack of knowing about how denying people the ability to communicate their demands, and failure to meet their wants, prospects to ‘challenging behaviour’,” she states. According to Morris, “institutional disablism” persists in many providers.

Sparrowhawk’s death is very likely to force closer scrutiny of premature deaths amid men and women with learning disabilities. Ryan and her husband Richard Huggins, who raised him because he was a infant, met outgoing NHS chief executive David Nicholson and chief nursing officer Jane Cummings. Between their demands have been automatic independent investigations of deaths in evaluation and therapy units, a corporate manslaughter charge towards the believe in and the closure of all this kind of units.

Studying disability charity Mencap, has warned in a joint statement with household-led organisation The Demanding Behaviour Foundation that Connor’s death is not the only tragedy. “We are at the moment operating with households in comparable, dreadful conditions,” it states.

As disparate components of the overall health and social care sectors wrestle yet again with bettering help, society’s most vulnerable men and women are becoming failed by the extremely mechanisms created to safeguard them. As Huggins says: “We put our faith in the system and received desperately allow down.”

Why did Connor Sparrowhawk die in a specialist NHS unit? | Saba Salman