‘I want to get out’: The fight for people with learning disabilities to live at home – not hospitals
The government has failed to meet its own targets to replace inpatient units with proper home support, to prevent people being locked away from life indefinitely
There are 2,045 people with learning disabilities or autism living in inpatient units in England – many of whom are detained under the Mental Health Act. On average, they remain in these hospital settings for just under five years.
The government has a longstanding promise to reduce the number of people with learning disabilities in inpatient units, prompted by the 2011 Winterbourne View abuse scandal.
But it has repeatedly failed to meet targets. The latest commitment was to reduce the number by 50% before March 2024, but Mencap estimates it will not meet this until 2030.
The charity is campaigning for ‘Homes not Hospitals’, calling for people with learning disabilities to be given the right support in the community.
Change is needed, and urgently. Families share their stories.
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Emma and Ben
Ben was a resident of Winterbourne View care home, which was exposed for serious failings and abuse of people with learning disabilities 13 years ago. His younger sister Emma shares their family’s story now that Ben is living in the community.
Ben was a resident of Winterbourne View, which was exposed for abuse scandals. Image: Supplied
Ben was diagnosed with autism when he was very young, and then a learning disability. He is very loved. He is funny, cheeky and always says something to cheer you up.
He left home for full-time residential education when he was eight. Schools could not cope with his needs. Life was complicated and he was far away, but Ben was resilient.
He never changed – until he was admitted to Winterbourne View, aged 18.
He had his jaw broken. His head was shaved. He was wearing someone else’s clothes and he rocked in his chair. It was the first time I saw him unable to grasp words or uninterested in the people around him. He didn’t look like Ben. It was horrible. Ben was scared. He was overmedicated. He went backwards in terms of need.
He was at Winterbourne View for 11 months, and the next placement had even more of a psychological impact. There was a quiet room which was unheated with a deflated blow-up mattress on the floor. They spent hours there as punishment.
Ben’s life turned around when he was released into the community. He is now 33 and lives in his own home. He has a dog. He is supported two-to-one by a provider that understands his trauma and the help he needs, and they have worked closely with him to get there.
Ben was labelled as someone who would never be able to function in the world, but he is now living the life he should have lived had he never gone to an inpatient unit. He is now happy. His story highlights that people can and should thrive in the community. People are utterly failed by the system. It has been 13 years since Winterbourne View was exposed and I think the most challenging thing for us as a family is how little has changed.
Hundreds, even thousands, of people have been through the system and have been failed by it over and over again. It is still far too easy to lock people away. Instead of supporting people through their trauma, the answer is far too often: ‘Let’s stick them back in a hospital.’
The next government needs to take this seriously. The multitude of missed targets in the time Ben was at Winterbourne View is an embarrassment to the government and society.
As a family, we are very different people because of our experiences, but Ben is in a good place. He has so many people who care about him. It feels weird to say, but he is one of the fortunate ones.
It is so sad that he is as fortunate as he is now because of everything he has been through. That is a cruel irony if ever there was one.
Sarah and Rose
Rose, whose name has been changed to protect her identity, is a 35-year-old who has been in an inpatient unit for a decade. Her mother Sarah shares her story.
Sarah wants to speak out to fight for change for her daughter and the thousands of other people with a learning disability living in inpatient units. Image: Supplied
Rose has been in a mental health hospital for 10 years. She increasingly finds it hard to understand things. Every time we speak on the phone she says: “I want my own place. I want to be out of here. There’s a new patient who screams all the time. I don’t like it.”
Rose has a learning disability which affects her development. She is very loving and she has lots of good humour, but she gets frustrated with her life because she doesn’t understand.
She needed me all the time growing up. She needed full-on time but as we both got older, I didn’t have the physical energy any more. She was in and out of care settings. She has a habit of walking off and the staff couldn’t cope. There were times she would walk out at night.
In December 2013, she was detained under the Mental Health Act. That first hospital closed, and she was transferred to another further away in October 2014. She has been there since. The hospital is disconcerting. It is behind a locked gate. You ring a bell and get permission to wait in reception, a small area with a glass window.
Rose is brought down and we walk through a corridor with locked doors to find a room. There is a kitchen where we can sit and have a coffee and chat.
We never went beyond that door. We never saw the dining room or lounge. I’ve only seen her bedroom once. We were escorted up and the door was open and we saw her room and came away again. It was almost worse to see than not see. It is so barren.
Rose likes colouring and painting but there is only so much she can do. She goes shopping once a month. She can go for a walk if someone takes her, and she gets taken out in the car sometimes, but she seems to spend a lot of time asleep.
She needed help when she was admitted, but you go to hospital to get better. For at least two years I’ve had it in writing that she is fit to leave hospital. There is nowhere for her to go. We were told there was a bungalow last year, but the funding wasn’t there. That disappeared. That was devastating. They’ve got care companies that will provide her with support and carers, but they can’t find accommodation.
The system needs to be simplified. The money that’s being spent on keeping her in hospital could be spent on providing her with a home and carers.
It’s a matter of somebody being able to see the bigger picture.
Elliot, 29, is now living in the community after his family campaigned to get him out of inpatient units. His sister Rebecca writes about why there needs to be more funding to support people in the community.
It took time for Elliot to recover after the trauma of inpatient units. Image: Supplied
Elliot is severely autistic and has a learning disability. He was outgoing growing up. He used to play with me a lot and we used to do a lot together. He has a great sense of humour. When he started school, things started to become a bit more complicated.
He was 14 when he was first admitted to an inpatient unit, in 2009. He faced horrible experiences. By the time Elliot was able to process his experiences and tell us what had happened there, it had closed down.
We noticed a lot of trauma after that first placement, but it wasn’t as bad as it is now. In our experience, going to an inpatient unit is better if you are a child because the ultimate goal is to get you back to your family. But when you’re older, it’s almost like they want you to live alone in the institution with a care team forever.
Elliot was sectioned in 2018. He was dealing with a lot at home and it was a lot to process. He was misdiagnosed with schizophrenia so he was on a lot of medication. When he got sectioned, there wasn’t a bed for him, so he was on the wrong ward for eight weeks.
He spent most of that in seclusion because the staff weren’t trained in caring for someone with a learning disability. And that’s where he remained right up until the day of discharge.
He was tormented by staff. It was terrible. My family campaigned to get him out and we were successful but when he got out, he crashed. It took a while to rebuild the damage it had caused him.
The process of arguing with the local authority and the mental health hospital takes a huge toll on families. It is not something I would ever want to do again.
I thought he would be so much better in the community – and I still think it’s so important people get out of the hospitals – but we’re having a really hard time at the moment. He’s a little freer. He’s got his own home. Some of the staff are caring.
Elliot is outgoing and loves steam trains. Image: Supplied
But it’s quite restrictive. It’s like he’s a walking risk assessment. There are lots of rules. His house is like a mini hospital. I don’t like going there because it makes me so sad. There are big hospital doors and the bathroom taps are moulded into the wall.
The toilet doesn’t have a seat because they see that as a threat. It’s got heavy, weighted furniture called pineapple furniture. Everything’s under lock and key. The windows don’t open. They just slide across with mesh on them.
There needs to be less funding going towards keeping people in hospital and more in the community. We need more intensive support which is actually tailored to the person. We need to help people build a life that they actually want to live.
Elliot really loves steam trains. He doesn’t understand that he can’t just go and see them on his own. Why can’t someone find a safe way to go with him to see the steam trains?
It can be challenging at times, but if you put in the work, there will be half as many challenges. Instead of restricting people, you should be meeting their needs. The system is just so broken.
Response from the Department of Health and Social Care: “The government is committed to ensuring that autistic people and those with a learning disability have the right support to lead ordinary lives in their communities, which can be a complex process and needs to be tailored to individual needs.
“We have made significant progress – halving the number of people with a learning disability in mental health hospitals – but we know there is more to do, particularly for autistic people. In 2023/24, we invested an additional £121m to improve community support, and we have set out to NHS bodies and local authorities, how they should work together to support people to be discharged from mental health inpatient services.”
Response from the NHS: “The NHS has increased investment in community support to enable more people with a learning disability and autistic people to receive personalised care in the community, and while there is more to do, significant progress has been made, with the number of people with these conditions in a mental health hospital being reduced by 30% since 2015, and the number with a learning disability being reduced by 60%.
“Staff continue to work hard to ensure patients are discharged into community settings safely and in a timely way, and the NHS will be working with local systems this year to ensure all areas have plans in place to address the increase in the number of autistic people and continue to ensure people are admitted only where necessary for mental health treatment.”
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