A Place To Call Home - Why are we stuck in hospital?

In recent years, there has been growing concern about the number of people with learning disabilities and/or autism living in long-stay hospitals. Although the UK decided to close asylums for people with learning disabilities from the 1960s onwards, there has been a growth in people admitted to so-called ‘assessment and treatment units’, with allegations that some people stay here for far too long, with little ‘assessment’ or ‘treatment’ that could not be provided elsewhere.

Explained by Professor Jon Glasby and Lucy Dunstan

My name's John Glasby.

I'm a social worker by background, and

I work at the University of Birmingham.

There's about 2000 people with learning

disabilities or autistic people

living in long stay hospitals in England,

sometimes for many years on end,

stuck and unable to come out and lead

more ordinary lives in the community.

The last two years we've been working

with our partner, Changing Our Lives

to carry out a national research study

to try and understand the experiences of people in hospital

and some of the ways that they think

they could be supported to come out drawing on the lived experience

of people themselves and their families and the practice knowledge of health and social care staff. A lot of the project has been

about understanding the experiences and the stories of people

with learning disabilities and trying to find ways

to amplify their voices so that their expertise by experience

is seen as part of the solution to this really difficult

and unacceptable policy problem. That's

why we've been working with partners at the Ikon and with Foka Wolf

to try and hear and amplify those voices.

Hi, my name is Lucy Dunstan and I'm Deputy Chief Executive Officer

Changing Our Lives. We're rights based organization

and we work alongside disabled people and people with lived experience

of mental health difficulties to find solutions

to social injustice and health inequality. We work alongside people

every day who are stuck in hospital, working

with them to help to understand them, to understand their needs, to challenge

the systems that are keeping them in there, to challenge professionals

who are a part of that system, and to ensure that people can move out

and live ordinary lives. As an organization,

we work with people who are from marginalized communities, people

from minority ethnic communities, people with profound

and multiple learning disabilities, and people who are stuck in hospital

or whose basic rights aren't being met. And it's the effects of that

that we see every day. That's why we're working on this project

with the university to ensure that the same things aren't happening

again and again in decades to come.

About the project

Other people live in secure units or in an NHS campus where the previous hospital is still in the process of closing. Over 2,100 people live like this at the moment (despite repeated policies to help people leave hospital and live in the community). This is a real problem as these services struggle to help people to lead ordinary lives, are very expensive, can be a long way from people’s homes and families, and have seen a number of abuse scandals – just as was the case with the asylums of the 1960s.

Despite this, there has been little research on why people with learning disabilities are delayed in such settings. In particular, previous debates have often failed to talk directly to people with learning disabilities, their families and front-line staff about their experiences of living or working in such settings, what they see as the main barriers and what would help more people to leave hospital. In other research with older people, the university has looked at these issues from the perspective of older people themselves, their families and care staff, as each group has a unique view on what is happening and might make a difference. Unless we listen to these voices we will not find solutions to these problems, and too many people will remain in hospital unnecessarily. the aim of the Why are we stuck in hospital project is to do the same with people with learning disabilities, their families and care staff, so that their voices are heard too. This will increase the chance that people can leave hospital in a timely way and lead more ordinary lives in the community.

Against this background, the University of Birmingham and the rights-based organisation, Changing Our Lives, are conducting a joint project to better understand the experiences of people with learning disabilities who have been stuck in long-stay hospital settings, their families and front-line staff – using this knowledge to create practice guides and training materials to support new understandings and new ways of working.

The aims are to:

Review the rate and causes of delayed hospital discharges of adults with learning disabilities from specialist inpatient units, NHS campuses and assessment and treatment units (referred to as ‘long-stay hospital settings’ as a shorthand).
More fully understand the reasons why some people with learning disabilities are unable to leave hospital, drawing on multiple perspectives (including the lived experience of people with learning disabilities and their families, and the tacit knowledge of front-line staff).
Identify lessons for policy/practice so that more people can leave hospital and lead a more ordinary life in the community.

A Place To Call Home - Why Are We Stuck In Hospital?

Transcript

About the project