Research on the experiences of people with learning disabilities and/or people with autism in ‘long-stay’ hospitals, has found they still face barriers to being discharged and living more ordinary lives in their communities – including overly-complicated treatment systems, lack of psychological support, and a culture of some patients being ‘set up to fail’.
The report, titled Why are we still in hospital? from the University of Birmingham and rights-based organisation Changing Our Lives, sets out findings from a study conducted with 27 people with learning disabilities and/or autistic people living in three ‘long-stay’ hospitals in England, as well as the perspectives of family members, hospital staff, commissioners, social workers, advocates, and social care providers.
Funded by the National Institute for Health and Care Research, this research has now been used to create a new guide and training video for those working in long-stay hospitals and in the community.
There are currently about 2,000 people with learning disabilities and/or autism in long stay hospitals at any one time. Over half have had a total length of stay of over two years, including 350 people who have been in hospital for more than 10 years.
Jon Glasby, Professor of Health and Social Care at the University of Birmingham, who led the project said: “We’ve known about these issues for more than a decade and yet progress has been painfully slow. One of the reasons for this is because we haven’t done enough to listen to the experiences of people with learning disabilities and autistic people in hospital, their families and front-line staff. Without drawing on this lived experience and practice knowledge, we’re unlikely to come up with solutions that actually work for people.”
An easy read version is also available.