The government has announced a fresh review into prolonged seclusion and long-term segregation of people with learning difficulties and autistic people in hospitals, more than 70 years after concerns were first raised by civil rights campaigners.
Health and social care secretary Matt Hancock announced this week that he had asked the care regulator to launch an immediate review into “the inappropriate use of prolonged seclusion and segregation” and said that some disabled people had been “treated like criminals”.
His call came following a series of media investigations into conditions in privately-run assessment and treatment units (ATU), facilities that are supposed to be used for short-term care if someone with autism or learning difficulties is in crisis and community-based services cannot cope.
The media reports have included allegations of widespread abuse, cruelty, physical restraint, poorly-trained staff and wrongful use of medication, as well as the frequent use of lengthy periods of solitary confinement.
In a letter to the chief executive of the Care Quality Commission (CQC), Ian Trenholm, Hancock pointed to one teenager, Beth – whose case was exposed by BBC Radio Four’s File on Four – who has been kept in solitary confinement and fed through a hatch in the door in a privately-run ATU for nearly two years.
Hancock said he had asked NHS England to carry out a serious incident review into Beth’s care.
But he said he also wanted CQC to carry out a review into “prolonged seclusion and long-term segregation for children and adults with a mental illness, learning disability or autism in secondary care and social care settings”.
The Equality and Human Rights Commission (EHRC) is also set to act. It is considering which of its enforcement powers – such as launching an investigation or an inquiry – it can use “to fix the current system”.
David Isaac, EHRC’s chair, said the current inpatient care system for people with learning difficulties had led to “some horrific situations at a number of assessment and treatment units where people’s fundamental human rights are being disregarded”.
The children’s commissioner for England has also written to NHS England to raise concerns about Beth’s treatment, and to raise a series of questions about how many ATUs are used by NHS England, how many children they have as inpatients and their use of restraint and segregation.
She said: “The NHS must work with councils to be more transparent about what is going on in these units and be proactive about making sure every child receives the support and treatment they deserve.”
Transforming Care aimed to “transform services so that people no longer live inappropriately in hospitals but are cared for in line with best practice, based on their individual needs, and that their wishes and those of their families are listened to and are at the heart of planning and delivering their care”.
But successive governments appear to have achieved little to fulfil those aims.
In 2012, a year after Winterbourne View, there were an estimated 3,400 people in NHS-funded learning disability inpatient beds.
The latest figures, published last month, show 2,315 people with learning difficulties and/or autism in England are still being detained in mental health hospitals.
Calls to address the scandal of people with learning difficulties living “inappropriately” in long-stay institutions date back at least as far as the 1940s – more than 70 years – to when the National Council for Civil Liberties launched a campaign against eugenicist laws that led at their peak to the institutionalisation of more than 50,000 people in long-stay hospitals.
A series of scandals through the late 1960s and 1970s highlighted concerns similar to those raised by File on Four, with inquiries reporting cruel ill-treatment, inhumane and threatening behaviour towards patients (at Ely Hospital), the “harmful over-use of drugs” (Farleigh Hospital) and the use of tranquilisers and “side-rooms” – or solitary confinement facilities – at South Ockendon Hospital.
Disabled activist Simone Aspis (pictured), director of the consultancy Changing Perspectives, who campaigns to free disabled people from ATUs and other institutions, welcomed the CQC review but said there needed to be a “proper root and branch review of legislation”, and that it needed to lead to “action”.
She said: “It is the legislation that allows ATUs to exist and oppress and treat disabled people as inhuman and treat them like animals.
“Feeding people through a hatch. What is that if not treating someone like an animal?
“It is the existence of ATUs, the power entrusted within them by the state.”
She said that whether the review had an impact would depend on “how much are they really going to listen to the voices of people with autism”.
She pointed out that poor practice and the institutionalisation of disabled people had persisted, seven years after Winterbourne View, allowing “easy detainment of people with learning difficulties and autism”.
Aspis, who is a member of EHRC’s disability advisory committee, but was speaking in a personal capacity, said she hoped EHRC would do something at a “much more fundamental level, with much more robustness” than she believed CQC would be able to.
She pointed to EHRC’s draft strategic plan for 2019-22, which has as one of its “priority aims” improving the rules on “entry into detention and conditions in institutions”.
Aspis said: “You can welcome [the CQC review]but is it going to say anything more than we know already?
“What we need is some serious action around closing these places down.
“As long as there are alternatives there, there is always an alternative to providing homes for people in the community.
“So the government has to say that these places need to be shut down and that the intensive care and support needs to be provided in people’s homes.”
She added: “Often people with learning difficulties end up being institutionalised because of the inadequacy of the support provided for people with learning difficulties and autism within the community.”
Aspis is currently working with two disabled people who are trying to secure their release from ATUs.
She said: “A lot of patients feel scared of speaking out and seeking support because they are concerned about the implications. There are a lot of disempowered people.”
Dr Paul Lelliott, CQC’s deputy chief inspector of hospitals and its lead for mental health, said: “There is understandable public concern about the use of prolonged seclusion and long-term segregation on people with mental health problems, learning disabilities or autism.
“It is vital that services minimise the use of all forms of restrictive practice and that providers and commissioners work together to find alternative, and less restrictive, care arrangements for people who are subject to seclusion or segregation.
“Failure to do this has the potential to amount to inhuman and degrading treatment of some of the most vulnerable people in our society.
“The secretary of state for health and social care has requested that the Care Quality Commission undertake a thematic review of this issue and we are now considering how we will take forward this important work.”
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