'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
The University of Birmingham and the rights-based organisation, Changing Our Lives, have conducted a joint project to better understand the experiences of people with learning disabilities and/or autistic people in ‘long-stay’ hospital settings.
Using this knowledge, they have created the below practice guides and training materials to support new understandings and new ways of working. SCIE have supported the project by creating training videos to disseminate the outcomes from the project to the health and social care sector.
This is a free 28-minute training video for health and care staff which explains the project, its findings and recommendations, and is brought to life by experts-by-experience.
Project summary video
Short of time? This short video provides a quick snapshot of the project and its outputs.
Practice guides and project outputs
- Policy guide with ‘ten top tips’ to help more people leave hospital
- Easy-read version of the policy guide designed for people with learning disabilities
- Background review of the literature, which looks at previous research on this topic and highlights the failure to draw on lived experience/practice knowledge.
About the project
In recent years, there has been growing concern about the number of people with learning disabilities and/or autistic people being admitted to hospital for extended periods of time, in some cases many years with no planned date for them to leave.
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 assessment and treatment units, with widespread recognition that some people stay for far too long, sometimes with little ‘assessment’ or ‘treatment’ that could not be provided elsewhere. Other people live in secure units or in an NHS campus alongside other services (we call these ‘long-stay’ settings as a shorthand).
Around 2,000 people live like this in England (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, can be a long way from people’s homes and families, are very expensive and have seen a number of abuse scandals – just as was the case with the asylums of the 1960s.
Despite this, there has been surprisingly little research on why people with learning disabilities and/or autistic people are delayed in such settings. In particular, previous research has often failed to talk directly to people with learning disabilities/autistic people, 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.
The underlying research for this project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (HSDR) (project reference NIHR 130298). The themes presented are based on participants’ experiences and on their advice to policy makers and practitioners trying to help more people leave hospital – they don’t necessarily represent the views of the NIHR, the Department of Health and Social Care or the other organisations who made this work possible, including SCIE.
Credit for the image used on this page goes to Think Big Picture.