Why are we stuck in hospital?
Research type
Research Study
Full title
Why are we stuck in hospital? Understanding service user, family and staff perspectives when transforming care for people with learning disabilities and/or autism
IRAS ID
290750
Contact name
Jon Glasby
Contact email
Sponsor organisation
University of Birmingham
Clinicaltrials.gov Identifier
N/A, N /A
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
Research Summary
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. 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, we have 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. Our aim here 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.
Summary of Results
Around 2,000 people with learning disabilities and/or autistic people are living in hospital, sometimes for many years (we call these ‘long-stay settings’). This is a real problem as these services are not designed to help people to lead ordinary lives, are expensive, can be far away from people’s homes and families, and have seen a number of abuse scandals.
Despite this, there is little research on why people remain stuck in such settings. In particular, previous research often fails to talk directly to people with learning disabilities, their families and front-line staff. Unless we listen to these voices we will not find solutions to these problems, and too many people will remain in hospital unnecessarily.
This is sensitive work, requiring skills in working with people who may not communicate verbally, where there is a risk that some people can be violent (as all of us can when we’re scared and distressed), and where there can be tensions around what is best. We therefore included an experienced team who could carry out such in-depth work in a way that suits the needs of the individual. We also worked with a group of people with learning disabilities and/or autistic people and their families to help us do our work well.
We found that:
• Lots of people are still stuck in hospital
• They are very frustrated and distressed
• Hospital is a difficult place to be while you are waiting to leave – but once you are in it is very difficult to get out
• Health and social care staff are also very frustrated, and find it almost impossible to help people leave hospital
• Hospital staff and community services find it difficult to work with each other
• Government has promised to solve this for more than ten years – but there are still lots of problemsREC name
Wales REC 5
REC reference
21/WA/0059
Date of REC Opinion
19 Feb 2021
REC opinion
Favourable Opinion