Use Your Power! Hidden scandal of people with a learning disability and autistic people being detained long-term in mental health hospitals
We’re calling for direct intervention by the Secretary of State for Health and Social Care to end the “hidden scandal” of people with a learning disability and autistic people being detained for many years in mental health hospitals.
Lucy from Warwickshire has shared her story of being detained in a mental health hospital as part of our Use Your Power campaign. Photo credit: VoiceAbility/Neck of the Woods Films
This week, the government will fail to meet its promise to halve the number of people with a learning disability and autistic people in mental health hospitals — from the 2,900 people who were being detained in 2015 — by the end of March 2024.
Our Use Your Power campaign calls on all UK political parties to commit to using the Secretary of State’s new powers to direct NHS England to urgently improve support for people with a learning disability and autistic people to live in the community and reduce detention in mental health hospitals.
There are currently more than 2,000 people with a learning disability and autistic people being detained in mental health hospitals in England. This is often for many years — the average stay is five years — and is leading to lifelong trauma and loss of life.
The campaign launches today (Monday 25 March) and includes a new film, sharing some of the heartbreaking personal stories behind the numbers.
Lucy kept a diary about being detained in hospital, a harrowing experience which “stopped her being a person”.
Lucy was detained in a mental health hospital for eight months between the age of 15 and 16, and in that time was diagnosed as autistic.
“It was a bit like, ‘and oh, she’s autistic’,” said Lucy, who’s from Warwickshire.
“Nothing changed between the care of an autistic and a non-autistic patient. Nothing. It was all the same. And people are not the same.
“Every single choice you make in order to express yourself, in order to have your own identity, is gone. You’ve got no choices, no options.
“You just have you and the clothes you’re stood in at that moment, and you stop being a person with your own identity and feelings. You’re room seven or you’re room two. You’re not Lucy.”
Lucy, pictured at home with her dog, said you don’t start becoming yourself again “until you leave and you’re out”. Photo credit: VoiceAbility/Neck of the Woods Films
“Becoming yourself, getting yourself back again, doesn’t start until you leave and you’re out and you’ve got your family and friends and community, and you’ve got a team of people who are fighting to keep you out and help you get well.”
Pam, who has a severe learning disability, said being detained in hospital “made her mental health worse”. Photo credit: VoiceAbility/Neck of the Woods Films
Pam, who has a severe learning disability, was also admitted to a mental health hospital as a teenager.
She was first detained in a secure unit in Berkshire and then moved to another one in Northamptonshire, away from her family.
Pam said: “I’ve seen some of the families and how hard it is when their children have died in them hospitals, or something’s happened to them in the hospital. It’s not nice.
“I felt betrayed and I felt disgusted in how the staff were treating me. I wanted to get out and I just didn’t feel safe.
“Being in hospital made my mental health worse. My personality changes so your mood swings change when you’re in places like that.
“I’ve been out now 30 years and it’s a lot better. I can get on with my life, have a family, have a dog, be at work, it’s great.”
Bethany, pictured with her dad Jeremy, spent three years in a seclusion cell. Photo credit: Jeremy — Bethany’s dad
Jeremy, a parent to his “amazing autistic daughter” Bethany, provides another perspective.
At the time of Bethany being admitted to an assessment and treatment unit in Northamptonshire, the family were told “it wouldn’t be for too long, perhaps six months”.
“The environment triggered the very things that caused Beth’s difficulties,” said Jeremy.
“She has so many sensory needs around sudden loud noises, bright lights, unpredictable behaviours, that putting her in a ward with people displaying those very things just tormented her.
“Beth became incredibly distressed in that setting. Beth resorted to what she thought would work — the challenging behaviour.”
Jeremy said the hospital tried medication, putting his daughter in a “chemical straightjacket”, and then seclusion.
Bethany holding her dad Jeremy’s hand through a hatch in the seclusion cell door. Photo credit: Jeremy — Bethany’s dad
“The periods of seclusion went from half an hour, to an hour, to half a day, to a day, and eventually they stopped opening the door,” said Jeremy.
“Beth spent three years in a seclusion cell in an environment that was just a room, 12ft by 18ft, nothing but a mattress on the floor. It was brutal. My contact when I went to see Beth of a weekend was through a hatch in a door.”
Bethany is now living happily back in the community. However, it took a tremendous fight by her family over many years to get her discharged from hospital.
“It does not need to be this way,” said Jonathan Senker, VoiceAbility’s chief executive who himself has fought to keep his sister, who has learning disabilities and is autistic, out of a mental health hospital.
“The stories of Lucy, Pam and Bethany — as well as media exposés like Winterbourne View, Whorlton Hall and the Edenfield Centre — shine a light on this hidden scandal. They’re all harrowing reminders of what reports going back many decades have told us time and again: better community-based support is still needed for people with a learning disability and autistic people to dramatically reduce human tragedy and abuse.
“What we need is the political will and accountability at the highest level to make a sustained difference across the whole country.
“In this year of a UK general election, we’re asking all political parties to commit to using the government’s new powers to direct NHS England to urgently improve support for people with a learning disability and autistic people to live in the community and reduce their detention in mental health hospitals.”