NHS failings in cases of three learning disabled people used as catalyst to tackle institutional care

Report highlights cases of three people who died or were locked away for years in assessment and treatment units

The experiences of people who use learning disability services and their families will become the focus of inspections, the Care Quality Commission (CQC) said in a report today which highlighted the cases of three people treated badly in NHS-funded learning disability services.

The report, which makes a series of recommendations to improve care for people with learning disabilities, stemmed from an event that the CQC and Challenging Behaviour Foundation (CBF) held after discovering Lisa, who spent nine years locked away with no interaction with staff bar having meals handed to her and her hair brushed through a small hatch in a door.

The delegates at the event also discussed the preventable death of Connor Sparrowhawk and the detention for over 10 years of former Winterbourne View resident Kayleigh in assessment and treatment units. see box.

The report, Three lives: what we learned, what we need to do, said: “Tragically there is a litany of abuse of those who are made vulnerable by their circumstances and all too often families who are so integral to fulfilling lives for their sons and daughters are alienated and excluded by the systems.”

It also described how what should have been short-term placements turned into long-term institutional care with people “stranded many miles from their homes and families” for long periods. Ending inappropriate and long-term hospital placements is the goal of the government’s programme to transform care after Winterbourne View; however, a target to achieve this aim by 1 June has been missed.

Delegates at the event came up with a series of recommendations including the ones below.

They said there should be a commitment from the Royal College of Psychiatrists and and the Royal College of Nursing to uphold professional standards for care and welfare of patients in learning disability care services as part of moves to make the health and care system focused on the people that use it.

The report said data from the annual learning disability census and quarterly NHS England figures should be used to identify who is in hospital and for how long in order to reduce the number and length of long-term detentions. Additionally the revised Mental Health Act 1983 code of practice, which is due for publication in October, should set out parameters for use of long-term detention under the Act.

It also recommended that Health Education England make a plan with measurable outcomes to ensure there are enough local, multidisciplinary, community learning disability services staffed with skilled professionals.

The report said the planning of transition from children’s to adults’ services is “poor across the country” and said there should also be a national audit of child and adolescent mental health services.

It said a group of lawyers should set out the legal issues involved in the cases of the three people profiled in the report resulting in a publication on rights and responsibilities and guidance for the Crown Prosecution Services on prosecutions of patients with learning disabilities.

The report said that more independent advocacy services should be used and made available because service users do not routinely have access to good-quality advocacy.

It also recommended the creation of a national strategy for secure services for learning disabilities to ensure people get the services they need rather than ending up in ones that are more secure than they require.

The CQC and CBF will hold another meeting in September to see what progress has been made on the actions in the report.

Vivien Cooper, chief executive of the Challenging Behaviour Foundation, said: “We know how to support people well and we know the importance of valuing families as key partners. There is no excuse for getting it wrong.”

Kayleigh’s mother Wendy Fiander, said: “These three lives are just the tip of a very large iceberg. We need to ensure that our most vulnerable and voiceless people are cared for as individuals with dignity and respect. In order to achieve this we must make families integral to any plans for their future. It is abhorrent that such appalling situations continue to occur in the aftermath of Winterbourne View and together we must pledge to stop it.”

Connor’s mother Sara Ryan, said: “Three lives, and three stories that are beyond shameful. It’s time to stop talking and act to change the paucity of aspiration and provision for learning disabled people.”


Three lives

The report highlighted the cases of the cases of three people who were badly mistreated in assessment and treatment units.
They included Lisa (not her real name) who spent nine years locked in an area at the end of the male ward. Staff interacted with her through a letterbox-style hatch in the door through which she was given food and had her hair brushed.She slept on a beanbag and never went out.

She was discovered following an inspection of the service by a carer on the inspection team who was one of the Challenging Behaviour Foundation’s (CBF) experts by experience. Initially the provider told the team that she had an advocate and there were regular review meetings, but the CBF expert pursued her case and discovered what had happened to her. Her service cost over £12,600 per week.

The report said: “No one raised concerns about this arrangement until CBF did. Lisa has now moved to a new service and is doing well, but there is considerable work to do to undo the damage caused by living in solitary confinement for so long.”

The report also highlighted the case of Connor Sparrowhawk, an 18 year-old who had epilepsy and autism. He had a seizure and drowned in the bath at the short-term assessment and treatment unit at Slade House in Oxford. An investigation found his death found to be preventable and followed significant failings in his care.

At the event, his mother described how his family struggled to get support for him as he moved into adulthood, but that it was not provided, and they were excluded from his care in the assessment and treatment unit.

The report also mentioned Kayleigh ,who spent over 10 years in assessment and treatment units. Following her release from Winterbourne View, she was sent to another private assessment and treatment unit 250 miles away from home. It was intended to be a short placement but she ended up there for two and a half years and was detained under the Mental Health Act.

While there, she was subjected to unnecessarily restrictive measures and her behaviour deteriorated leading to further restrictions in a “self-perpetuating cycle that appeared to have no end”. After a long and determined campaign, her mother managed to get her out and she moved back to her own house.

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