New research has revealed the main barriers to moving autistic people and people with learning disabilities out of long-stay hospitals and into the community.
With more than 2,000 autistic people and people with learning disabilities still stuck in hospitals in England, researchers from the University of Birmingham set out to discover what was preventing them from leaving.
“Future generations will look back at us and find the current situation barbaric”
Hospitals are not homes, and NHS England’s Building the Right Support programme, which was published in 2015, aimed to reduce the number of people with a learning disability and autistic people in mental health inpatient settings.
However, progress has been slow, and over half the people stuck in hospital have been living there for more than two years. Around 350 have there for more than 10 years.
Jon Glasby, Professor of Health and Social Care at the University of Birmingham, who led the project, says most people do not want to be in hospital – they want to live in the community, leading an “ordinary life”.
“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,” he said.
Professor Glasby says one of the reasons progress has been so slow 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,” he said.
Uncertainty around who is meant to plan and coordinate care
To find out more about people’s experiences of hospital care, the university of Birmingham and Changing Our Lives interviewed 27 people living in three long-stay hospitals in England, as well as their family members. The researchers also spoke to hospital staff, commissioners, social workers, advocates, and social care providers.
The main barriers identified were:
Delays in planning and co-ordinating care, caused by uncertainty about who is supposed to plan and coordinate care
Hospitals not knowing which 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.
People with learning disabilities and their family members also said they feel as though people are seen as a collection of ‘labels’ and diagnoses, not as individual people, and different services often do not make it clear who is in charge.
The project also provides service providers with 10 tips for helping people leave hospital, which will help people with learning disabilities and autistic people to overcome these barriers.
Art exhibition highlights the report’s key message
To raise awareness of the report’s findings, Ikon Gallery in Birmingham is hosting an exhibition of the same name, ‘Why Are We Stuck in Hospital?’.
The exhibition features work from artist and activist Foka Wolf, and illustrates the invisibility of people with learning disabilities and autistic people in long-stay hospitals.
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.”
The exhibition runs from 7th March – 19th March, to find out more, click here.