CareDisabilityHealthHealthcareLearning DisabilitiesNews

Report Calls For More Ordinary Lives For 2,000 People With Learning Disabilities And/Or Autism In ‘Long Stay’ Hospital Settings

An in-depth report into the challenges faced by people with learning disabilities and/or autistic people trying to leave ‘long-stay’ hospital is published in full for the first time today, offering solutions from the point of view of people with learning disabilities, families and front-line staff.

The final ‘Why are we stuck in hospital?’ report presents research conducted by the University of Birmingham and the rights-based organisation Changing Our Lives who interviewed people with learning disabilities and/or autistic people in hospital, their families and front-line staff to investigate things that would help more people leave hospital. The lived experience and practice knowledge shared with researchers have informed a suite of accessible training materials and a good practice guide that could help more people leave hospital.

The research was funded by the National Institute for Health and Care Research (NIHR).

There are currently 2,035 people with learning disabilities and/or autistic people in hospital at any one time. Over half have had a total length of stay of over 2 years, including 360 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. Just last week we saw the sentencing of four carers convicted of abusing patients at Whorlton Hall, and yet progress continues to be painfully slow. Deep down we can’t help but think that if this was happening in any other similar healthcare setting, more immediate action would have been taken.”

“Our research not only identifies the barriers keeping people trapped but also offers a way forward, drawing on the expertise of people in hospital, families and staff.”

Barriers to leaving hospital identified by the research include: a lack of urgency from everyone involved, complicated services and funding, and a failure to plan support after hospital around the needs of individuals. While people, families and staff were all frustrated with this situation, many felt helpless to bring about any positive change.

Jayne Leeson MBE, Chief Executive at Changing Our Lives added: “The injustice of people being needlessly kept in long-stay settings for such lengthy periods of time is one of the biggest health and social care scandals of our time. Being stuck in hospital is more often than not down to failures across the whole health and social care system. Getting people out of these hospitals and into their own homes is one of the priorities of Changing Our Lives, and being a partner in this research is one of the ways we can bring this issue to the attention of policy makers and practitioners alike.”

As part of the research project conducted by the School of Social Policy at University of Birmingham, Birmingham-based artist and activist Foka Wolf’s installation Why Are We Stuck in Hospital? was produced by Ikon. Originally displayed at Ikon Gallery in March 2023, the installation tours in 2024 to Site Gallery in Sheffield (21 March – 7 April) and Fabrica in Brighton (7 – 14 August). The exhibition comprises an impossible maze, with no end, graphic design and declarative captions to illustrate the invisibility of people with learning disabilities and autistic people in long-stay hospitals. Foka Wolf’s artwork is also displayed on Jack Arts billboards around Sheffield and Brighton.