Understanding the perspectives of people with learning disabilities and/or autistic people, family and staff when transforming care for people in ‘long-stay’ hospitals.
Download the latest report:
HS&DR programme
Start date:
1 January 2021 (duration – 24 months)
Team
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 麻豆精选 and the rights-based organisation, , 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'
1. Our lives are on hold – do your jobs and get some 'oomph'
2. See the person behind the labels
3. Don't make me jump through more hoops than is really needed
4. Make sure the criminal justice system is on board (where someone has committed an offence)
5. Help hospital staff know what's available in the community
6. Don't put us into boxes or 'scatter-gun'
7. Give me the chance to try life outside
8. Please help me with the trauma I've experienced
9. Don't let us fall through the cracks
10. Don't set us up to fail
- ‘ (Dimensions)
- The campaign (British Association of Social Workers)
- A (Dimensions, currently being updated)
- (Changing Our Lives)
- (a really helpful overview of everything you need to know from the Challenging Behaviour Foundation)
- The report from Baroness Hollins (hosted by Learning Disability England and BILD)
- Mencap’s
- (University 麻豆精选 and partners)
- The (hosted by Learning Disability England)
Outputs
Policy and practice partners across the UK have since been working with the ‘ten top tips’ from this research to reflect on and change local practice (). This includes a video around ‘the impact of missed opportunities’ made by the Restraint Reduction Network, BILD and other partners ()
Glasby, J., Miller, R., Glasby, AM., Ince, R. and Konteh, F. (2024) Health and Social Care Delivery Research Volume: 12, Issue: 3, Published in February 2024.
NIHR Funding and Awards.
Jessica Murray (14 March 2023) 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.
Awards
In 2022, our partner, Changing Our Lives, were part of the Team Around Kassiba, a multidisciplinary social work team from Camden Integrated Learning Disability Service, who won the team of the year and were overall . They have since published a ‘’ book and a really powerful video to tell Kassiba’s story.
In 2023, the project won an Innovation in Inclusion award at the Health Service Research UK annual conference. The project was later , with the team travelling to Zagreb to take part in the ceremony and in a panel discussion around person-centred services.