Inside the "barbaric" mental health units holding autistic adults and children
1,860 adults and 235 children with learning disabilities or autism are currently in mental health units in the UK (Alamy)
Nearly 2,000 adults and hundreds of children with learning disabilities or autism are being held in mental health units, with an average stay of more than five years, despite repeated abuse scandals. Justine Smith reports
Shortly after her 18th birthday, Danielle Attree woke in the night to be confronted by several men. She was handcuffed and bundled into a secure van. When she lashed out, fighting for her life as they arrived at their destination, she was violently restrained, drugged and locked in a room with only a mattress on the floor.
Danielle spent most of the next 551 days in that cell. During her 14-year incarceration – her ordeal started when she was 12 – she has been sexually assaulted, physically abused, chemically coshed and moved to 18 different locations. What has felt to Danielle like half a lifetime of kidnapping and false imprisonment has all been state sanctioned and publicly funded. It happened, and continues to happen, up and down the UK on a daily basis.
She is one of 1,860 adults and 235 children with learning disabilities and/or autism currently in mental health units in what some call one of the UK’s most shameful open secrets. Their average length of stay is five and a half years.
Danielle’s “crime” was to be born autistic and have a breakdown before she was even in her teens, triggered by an onslaught of traumatic events including her brother’s death from a brain tumour, and brutal physio treatment for a spinal disability.
Her family say that instead of healing her and providing care to let her live in the community, she has been misdiagnosed, misunderstood and maltreated by the NHS.
“If you treated a dog the way we treat people like Danielle, you would be put in prison for a long time,” says her mother, Andrea Attree, from Kent.
“She weighed 34kgs when she stopped eating yet it took six men to restrain her. I have photos of the bruises. We’d make a complaint, get an apology, I would be promised it wouldn’t happen again but it always did. She has tried to take her own life more times than I can remember, making herself physically disabled in the process. She has been sexually assaulted, which the hospital accepted, but it’s impossible to prove: how could she give evidence in court?
“There is an alternative. After years of fighting to get her out, I am now hoping to get her moved into a bungalow with appropriate support so she can live in relative peace, near her family in the community.”
“If you treated a dog the way we treat people like Danielle, you would be put in prison for a long time"
Like Danielle, most inpatients – 92 per cent – are detained for “their safety or the safety of others” under the Mental Health Act. About a third are sectioned by order of a court as an alternative to prison, the rest under civil sections.
Despite repeated scandals of abuse, subsequent inquiries and promises to move people with learning disabilities and autism out of hospitals and into safe community settings, campaigners say nothing has changed. The number of affected under-18s in the system has doubled since 2015.
Millie Hall, of charity Article 39, which fights for children’s rights in institutional settings, says: “We hear parents say they completely regret their decision to seek help for children with learning disabilities and autism. They end up miles away from their families in inappropriate environments which overuse restraint and other punitive forms of control.”
Award-winning filmmaker Richard Butchins, who is autistic and has experience of the system, spoke to autistic in-patients and asked them to make videos from inside the units where they were detained for Channel 4’s Dispatches documentary, Locked Away: Our Autism Scandal.
He says: “The film is very distressing. I had to be careful with the balance of the film because otherwise it would have been too hard for viewers to watch. These are some of the most vulnerable people in society and the way they are treated is barbaric. It is a stain on our society.
“One of the young in-patients in my film tragically took her own life. She had been put through mental health care that was entirely inappropriate for someone on the spectrum.”
Some go in voluntarily or are taken by loved ones in search of therapy and support in moments of crisis, expecting to be in for just a few days. Once inside it can become increasingly impossible to get out as they get trapped in a vicious, almost Kafkaesque downward spiral.
Dysregulated and petrified by the chaotic, unpredictable, environment and loss of control, many suffer profound and sometimes irreversible deterioration of their mental health.
Some may lash out in fear, prompting hospital support staff, often inadequately trained, under pressure and on minimum wage, into behaviourist and medical responses.
Conservative MP Robert Buckland, chair of both the All-Party Parliamentary Group (APPG) on Learning Disability and the APPG on Autism, says: “I thought the days of locking people up because of their condition and forgetting about them had long gone in this country, but it is horribly alive and well.
“The pace of change is depressingly slow. While the NHS and local authorities argue over who should pay, we are caging people with learning disabilities and autism in inappropriate settings where we know they are all too often abused and maltreated. We are spending half a billion pounds a year to harm people at the moment. It’s unacceptable.”
Dan Scorer, head of policy at the charity Mencap, adds: “The key is to get more funding into social care and address the workforce crisis where there are 165,000 vacancies, this is even worse than the current NHS workforce crisis.”
Labour MP Barbara Keeley, chair of the APPG on Inappropriate Institutional Care of Autistic People and People with Learning Disabilities, tells The House: “This February, NHS England quietly published a report analysing 1,770 individual reviews of the care of autistic people and people with learning disabilities, including children, who were detained in in-patient services. The report was commissioned following the tragic deaths of three young patients at [private hospital] Cawston Park.
“It found evidence of high levels of restrictive practice, that more than half of people were being detained a long way from home, and that 41 per cent of people did not need to be in hospital at all. I have called on health and social care ministers to take urgent action to end the inappropriate detention of autistic people and people with learning disabilities.”
Alexis Quinn, from Herne Bay in Kent, manager of the Restraint Reduction Network, called her memoir Unbroken, but admits she is anything but. The former teacher, who has autism, was sectioned for four years after she asked for help when her brother’s death triggered unmanageable overwhelm.
“It’s been seven years, yet I can’t go an hour without thinking about it,” she says. “The legacy of the harm of solitary confinement is something I will always have to live with. It’s utterly dehumanising having to urinate in front of people, eat on the floor with your hands because you’re not worthy of a table. I was in 12 different hospitals and it was the same in every one. This is a systematic failure.
“I escaped when I was being moved to a different hospital and fled to Africa where, with compassion, respect and love, I very quickly got better and was teaching again within weeks.
“I am currently feeling unwell again and have been asking for help for seven months. Nothing has changed, I have not been offered the help I need and am terrified of going back in again.”
Autism is a neurodevelopmental condition, not a mental health condition, though it is wrongly defined as one under current laws.
Ella Pitt, senior policy and parliamentary officer at the National Autistic Society, says: “This is something we are urging the government to change as part of the draft Mental Health Bill. Mental health hospitals are not the right place for the vast majority of autistic people and people with learning disabilities, and can be deeply damaging. We continue to hear alarming cases of over-medication, seclusion and unnecessary restraint.”
Sara Ryan, a professor in social care, has campaigned against the failures of the system since her son, Connor Sparrowhawk, died aged 18 while detained at Slade House assessment and treatment unit near their Oxford home in 2013.
Connor, 18, nicknamed Laughing Boy, was autistic with learning disabilities and epilepsy. His parents took him to the unit out of sheer desperation after begging for support for months to manage his sudden downturn. After a hellish 13 weeks, during which he was restrained and became dangerously underweight, he died of a seizure in a bath. Southern Health Foundation NHS Trust finally admitted responsibility after it was revealed the trust had failed to investigate the deaths of more than 1,000 patients over four years.
“We had taken him there to try to protect him,” says Professor Ryan. “I never imagined an NHS hospital would be so devoid of basic care that a young person could die like that. It was the most untherapeutic environment you could imagine. How can this possibly be happening in what we believe to be a civilised society? People are dying in these places of basic neglect. They are being abused, sometimes taking their own lives, and each needless death barely causes a ripple of outrage.”
Shadow mental health minister Dr Rosena Allin-Khan says: “Accounts such as these are incredibly distressing and demonstrate the urgent need for the Mental Health Act to be reformed.”
A Department of Health and Social Care spokesperson says: “Everyone should have the right to live in their own homes and access the right support at the right time.
“We remain committed to achieving our ambition set out in the NHS Long Term Plan to reduce by half the number of autistic people and people with a learning disability in mental health hospitals by March 2024, and this year we are investing £121m in community support for people with a learning disability and autistic people, including for children and young people’s key workers.”
However, consultant clinical psychologist Professor John L Taylor, approved clinician and chair of the British Psychological Society’s Mental Health Act Advisory Group, questions the “ideological and political” focus on bed closures.
He says: “The only sector which has benefitted is the private sector. NHS commissioners have effectively closed most of the NHS specialist learning disability and autism beds. Meanwhile it seems the community services the government claims are the answer to everything are actually diminishing. Now, if somebody is such a high risk to themselves or others that they need to be contained, it can only be done through the prison system or sectioning under the Mental Health Act.
“What is needed now is a root-and-branch review of this programme and a serious analysis of the needs of people with learning disabilities and autism, including a realistic assessment of the number of specialist beds that are required to meet their needs safely and effectively, along with a costed programme of real and substantial investment in specialist NHS community services.”
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