Research into the experiences of people with learning disabilities and/or autistic people in ‘long-stay’ hospitals, has revealed the barriers they face 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’.
Research from the University of Birmingham and the 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.
The research was funded by the National Institute for Health and Care Research (NIHR).
Through observation, interviews and focus groups, researchers were able to build a detailed picture of the issues keeping adults stuck in long-stay hospital, sometimes for many, many years. 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 autistic people in hospital at any one time. Over half have had a total length of stay of over 2 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.”
The research revealed that the main barriers to moving people out of hospital and back into communities fell into the following areas:
- Seeing people as a collection of ‘labels’ and diagnoses, not as individual people.
- Different services and professions not sure who should be in charge.
- Massive delays in planning and co-ordinating who does what.
- The difficulty of linking up the criminal justice system with health and social care (where someone has committed a crime).
- An overly complicated treatment system which leads to patients ‘jumping through hoops’ to try and leave hospital sooner.
- Staff in hospitals not always knowing what community-based care options are available.
- A lack of psychological support for patients who may have experienced traumatic events in their past or during hospital stays.
- Patients falling through the cracks in the health and social care system.
Most people want to come out of hospital and to live an ordinary life – and this doesn’t feel like much to ask. Although we look back with horror at the old asylums, future generations will look back at us and find the current situation barbaric. People’s lives are on hold, and no one thinks this is good enough.Professor Jon Glasby, University of Birmingham
One person stuck in long-stay hospital who took part in the research said: “I have my days when it gets me down you know, like, why am I still here?... I’ve had about four places that have come to assess me, but they’ve all turned me down. They turned me down because I don’t have a learning difficulty, so I don’t fit [the] criteria and because I don’t fit [the] criteria, the commissioners won’t accept me.”
Another person said: “I just want to move on really - I cry in my room. I’m so far away from my mum.”
As part of the project, Ikon Gallery in Birmingham is hosting an exhibition of the same name, ‘Why Are We Stuck in Hospital?’ Featuring the work of Birmingham-based artist and activist Foka Wolf, the exhibition illustrates the invisibility of people with learning disabilities and autistic people in long-stay hospitals. The exhibition runs from 7th March – 19th March.
Linzi Stauvers, Acting Artistic Director, Education, at Ikon said: "As we have come to expect from Foka Wolf, this new artwork is straight to the point. It challenges us to think for ourselves and act on behalf of our community. It’s also graphic, colourful and highly theatrical, shining a light on the creativity of the thousands of people incarcerated in hospital settings.”
Jayne Leeson MBE, Chief Executive at Changing Our Lives commented: “Planning and advocating alongside people with learning disabilities and autistic people who find themselves in hospital, and working as part of a wider team to ensure these individuals move into their own homes, has given the team in Changing Our Lives a front row seat in what we consider to be one of the biggest health and social care scandals of the two decades.
“Recognising the injustice of this situation, we were very happy to work with the University of Birmingham on this much needed research, which as Jon Glasby rightly says, has listened to and gathered the thoughts and experiences of the people who have personal experience of living within these locked hospital settings."
Professor Glasby concluded: “Most people want to come out of hospital and to live an ordinary life – and this doesn’t feel like much to ask. Although we look back with horror at the old asylums, future generations will look back at us and find the current situation barbaric. People’s lives are on hold, and no one thinks this is good enough.”