Thousands of people with learning disabilities are stuck in long-stay hospitals because of a lack of psychological support and overly complicated treatment systems, according to research.
The report from the University of Birmingham and rights-based organisation Changing Our Lives has been released in conjunction with an exhibition from the subversive street artist Foka Wolf titled Why are we stuck in hospital?
The Birmingham-based artist, known for his billboard pranks, has created a gallery installation to illustrate the invisibility of people in long-stay hospitals such as assessment and treatment units or secure units.
There are about 2,000 people with learning disabilities and/or autistic people in hospital at any one time, with more than half staying for over two years, while 350 people have been in hospital for more than 10 years.
“I read some of these horror stories, and they sounded like they were from the Victorian times. I couldn’t believe what I was hearing,” said Wolf. “With the exhibition, I didn’t want to make it conceptual, I wanted it on the nose.
“Usually I try to make people laugh with my work, but with this I wanted to just get people really in the stomach.”
The focal point of the exhibition is a quote from a patient – “I’m so far away from my mum” – which appears under a UV light when the room is dark, surrounded by an ‘impossible’ maze with no exits.
His work is a response to the research and stories gathered by Birmingham university academics, who interviewed 27 people with learning disabilities living in three hospitals in England, as well as family members, hospital staff, commissioners, social workers, advocates and social care providers.
They identified a multitude of issues that are keeping people trapped in the system, such as poor planning and coordination between different services, and complicated systems that leave patients jumping through hoops to try to get out.
“People spoke about hospitals being quite traumatic places. A hospital isn’t a home, it’s not somewhere that you should be living,” said Jon Glasby, professor of health and social care at the University of Birmingham, who led the project.
“It’s a very locked-in artificial environment, so people often find it stressful. Some people have got very complex health and social care needs, but they’re also in these hospital settings sometimes many miles away from their friends and families and communities.”
One hospital staff member quoted in the report said: “We’ve had people come in really, really unwell. We’ve gotten [them] really good and then all of a sudden there’s nowhere for these patients to go and then they’re staying, and they deteriorate further.”
The research has been used to create a guide and a training video for staff in long-stay hospitals, and the authors hope it will help raise awareness of the issue.
“It has been government policy for about 10 years now to try and stop this situation and progress has been painfully slow,” said Glasby, adding that most of the money allocated to the service goes on hospital treatment, rather than rehabilitating people back into the community.
“We’ve argued that perhaps we’ve approached these issues from a top-down perspective too much in the past, and we need to draw on the lived experience of people who are actually in hospital, and their families to find better solutions.”
The exhibition at the Ikon Gallery, Birmingham, runs until 19 March.
• This article was amended on 14 March 2023. An earlier version said that the report was done just by the University of Birmingham instead of jointly with Changing Our Lives.
