Why are we stuck in hospital?

Understanding the perspectives of people with learning disabilities and/or autistic people, family and staff when transforming care for people in ‘long-stay’ hospitals.

NIHR logoHS&DR programme

Start date:
1 January 2021 (duration – 24 months)

Team

Aims of the project

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.

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.

Our 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.

Download an easy read version of the webpage (PDF)

A more accessible film for people and families made by 'Changing Our Lives'
A sketch of two figures  trying to move forward but with their feet stuck in the ground

1. Our lives are on hold – do your jobs and get some 'oomph'

A sketch of a figure carrying lots of labels on its head2. See the person behind the labels

a sketch of a figure jumping through hoops

3. Don't make me jump through more hoops than is really needed 

A scetch of five figures sitting around a table having a discussion with some scales in the background4. Make sure the criminal justice system is on board (where someone has committed an offence) 

A sketch of a figure scratching its head looking at a map5. Help hospital staff know what's available in the community 

A sketch of 4 figures sitting in boxes with labels on them: MH, ASD, LD and PD

6. Don't put us into boxes or 'scatter-gun'

A sketch of a figure leading another figure with an arrow pointing the way forward7. Give me the chance to try life outside 

A sketch of two figures having a conversation with an open book in front of them8. Please help me with the trauma I've experienced

A sketch of a figure falling down off a cliff with figures on the ground below9. Don't let us fall through the cracks

A sketch of 3 figures walking up a hill with another person waiting at the top. An alarm clock is ringing in the background

10. Don't set us up to fail

Useful resources

Outputs

Jessica Murray (14 March 2023) Thousands with learning disabilities trapped in hospital, some for years. The Guardian.

Ince, R., Glasby, J., Miller, R., & Glasby, A-M (2022). ‘Why are we stuck in hospital?’ Understanding delayed hospital discharges for people with learning disabilities and/or autistic people in long-stay hospitals in the UK. Health & Social Care in the Community, 30, e3477– e3492. https://doi.org/10.1111/hsc.13964