Why are we stuck in hospital?

At any one time in England, there are about 2000 people with learning disabilities and or autistic people in long stay hospital settings, sometimes for many years, with no sense of when they might get out. This is problematic for four reasons. One. Hospitals are not geared up for helping people lead an ordinary life. Two. People are often a long way away from friends, family, and communities.

Three. It's extremely expensive taking money away from stopping people getting admitted to hospital in the first place, or providing support for people in the community after hospital. Four. We have seen horrific abuse scandals as raised by BBC Panorama and others in highly pressured and sometimes remote hospital environments. Against this background, the University of Birmingham and the rights based organization Changing Our Lives have carried out a joint project in order to better understand the experiences of people with learning disabilities and or autistic people in long stay hospital settings, encompassing the experiences of people in hospital, their families and frontline staff.

The intention is to use this knowledge to create a good practice guide, as well as training materials, including this video, to support new understandings and new ways of working. The project was led at the University of Birmingham by Professor Jon Glasby, speaking. We've been running a two year research project funded by the National Institute for Health and Care Research, in three long state hospitals across the country.

We've talked to 27 people with learning disabilities and autistic people who are currently in long stay hospitals. We've also interviewed their families where they've given us permission. We've carried out focus groups with hospital staff, and then we've done some work with commissioners, with social workers, with advocates, and with social care providers who often support people after hospital to get their perspectives.

We've also reviewed people's case files, and we've observed multi-disciplinary decision making meetings. And then finally, we've tried to follow people up 12 months after their original interview to get a sense of what happened after we first met them and where they are now. Contributing to the research was a reference group of people with learning disabilities, autistic people, some of whom had spent considerable periods of time in hospital, as well as their families.

Many people with learning disabilities and or autistic people have found themselves in and out of hospital on multiple occasions, sometimes since childhood. This was the case with reference group member Z.z., who was first admitted as a teenager and spent four years in secure settings. “I first got poorly, with kind of self-harm things when I was 11, but when I went to hospital, that was from the ages of 14 to 18. And so I was in hospital for that amount of time. I was sectioned, I think four times. And had five admissions. I was in units all across the country. So I was in Staffordshire, I was in Sheffield, Wales even, and quite a few hospitals in Birmingham.”

Levels of anxiety and distress experienced in hospital were intolerable for many of those contributing to the study. Reference group member Mandy, who had been in several hospitals in her 20s and 30s, shared her experiences. “The horrible police pulling… frightened… didn’t know what was happening to me…”

Although their experiences have too often been negative, many people included in the study understood why they had been admitted to hospital, as did reference Group member Matthew, who spent approximately 16 years in secure hospital settings after the support he was given in early adulthood failed to meet his needs. “It's not nice being taken away, but it's necessary if it's necessary… to keep that person safe.”

The research revealed that people stuck in hospital felt that they were not being listened to. Equally, family members consistently expressed the same concerns. Vivian Cooper, The Challenging Behaviour Foundation: “You have a system that is not taking notice of the person or the family or the advocates or people who know them well.”

One of the outputs of the research project is a good practice guide called Why Are We Stuck in Hospital? aimed at overcoming the barriers faced by people with learning disabilities and or autistic people as they leave long stay hospital. Jon Glasby explains how the project outputs were created: “We’ve drawn particularly on people's lived experience and also on the practice knowledge of frontline staff, and we've drawn those up into ten top tips to try and help more people come out of hospital in future…”

Tip 1: Our lives are on hold — do your jobs and get some oomph.
People have been in hospital for many years and feel their lives are being wasted. Many said professionals took too long to make decisions or didn’t take ownership. Social workers changed often; commissioners were rarely seen.

Tip 2: See the person behind the labels.
People gain more and more labels in the system, and staff focus too much on diagnoses and not enough on who the person is.

Tip 3: Don’t make me jump through more hoops than needed.
People feel they must constantly “prove” readiness to leave hospital — with changing requirements and “moving goalposts.”

Tip 4: Make sure the criminal justice system is on board.
For those who have offended, decisions often depend on distant Ministry of Justice staff who have never met the person.

Tip 5: Help hospital staff know what’s available in the community.
Staff often don’t know what community options exist, or base decisions on what’s available rather than what’s possible to create.

Tip 6: Don’t put us into boxes — or scattergun.
Services organised around strict categories often exclude people with multiple diagnoses. Meanwhile some staff send referrals everywhere hoping something sticks.

Tip 7: Give me the chance to try life outside.
People can’t prove they are ready for the community if they’re never allowed unescorted leave or trial opportunities.

Tip 8: Help me with the trauma I’ve experienced.
Many have childhood trauma and also experience new trauma in hospital — restraints, injections, unsafe environments.

Tip 9: Don’t let us fall through the cracks.
Conflicts over funding and system fragmentation often delay discharge for months or years.

Tip 10: Don’t set us up to fail.
Discharging someone too early or without the right support just leads to readmission.

The research also highlighted positive examples of success. Matthew now lives in his own flat, works as a courier, and enjoys flying drones. Mandy lives independently, competes in Special Olympics, and works with Changing Our Lives. Zizi is studying neuroscience and advocates internationally for autistic young people.

Success, the researchers say, means people living ordinary lives in the community: lives of their choosing, with relationships and opportunities like anyone else.

So at any one time there are about 2000 people with learning disabilities or autistic people in long stay hospitals, often hundreds of miles or many miles away from their family, their friends, their communities.

Hospitals aren't geared up to help people lead an ordinary life, and they're also incredibly expensive so that we have less money available to stop people going into hospital in the first place or help them coming out the other side.

And then finally, we've seen loads of really horrific abuse scandals like that at Winterbourne View exposed by Panorama.

Hospitals are fine if that's what you need them for a particular moment in time, but they shouldn't be home.

The research is trying to draw on lived experience and practice knowledge to generate solutions to these issues. And in the process we're trying to amplify the voices of people with learning disabilities and autistic people in hospital.

That's why we've worked with the Ikon and with Foka Wolf to produce the exhibition. But we're also producing a policy guide that goes out to every health and social care leader in the country and a free training video that will go to care staff that might not normally have access to the training budgets or to training time.

We've also got a linked billboard campaign which is trying to get these messages out into the public domain.

I don't usually work in this sort of setting. My work is predominantly in public spaces. But when I was approached by the University and Changing Our Lives to do this because it was a good cause, I thought I would—don't mind changing my setting.

And also the subject matter of my work is usually, I guess, humour based, but with this it was too heavy to sort of put any humour in it. So it put me in a position where I had to sort of think of something that would get eyes to it and create some sort of controversy, but without using humour or any of the surreal stuff.

So what I've done is I've got the facts and figures there, but also I've got a quote that’s also from the research in two different states.

It's been really poignant for me coming here today. I've learned a lot more about the issue. I had no idea it was actually such a big problem. And it's been really interesting to see what research the University is doing into the problem as well.

So yeah, it's been a big learning experience.

So the one message that I would like people to take from this would be just to listen to sort of the voices in society that are not being heard.

We've tried to solve these problems top down through national policy and for ten years it hasn't worked. What we need to do now is understand the lived experience of people who are in hospital and of their families. We need to listen to the practice knowledge of people who work in frontline health and social services. And we need to use those forms of expertise to come up with better solutions so that we solve this problem once and for all.