In recent years, there has been growing concern about the number of people with learning disabilities and/or autistic people being admitted to secure hospitals for extended periods of many years with no planned date for them to leave. Although the UK decided to close its asylums from the 1960s onwards, there has since been a period of ‘re-institutionalisation’ which seems to have crept up on us almost by accident, without anybody really realising the scale of the problem.
Around 2,000 people still live like this in England, despite repeated policies to help people leave hospital and live in the community. This is a real problem as these services struggle to help people to lead ordinary lives, can be a long way from people’s homes and families, are very expensive and have seen several horrific abuse scandals – just as was the case with the asylums of the 1960s.
There has been surprisingly little research on why people get stuck in such settings. Previous research has often failed to talk directly to people with learning disabilities/autistic people, their families and front-line staff about their experiences of living or working in such settings, what they see as the main barriers and what would help more people to leave hospital.
Despite this, there has been surprisingly little research on why people get stuck in such settings. Previous research has often failed to talk directly to people with learning disabilities/autistic people, their families and front-line staff about their experiences of living or working in such settings, what they see as the main barriers and what would help more people to leave hospital. Without drawing on this lived experience and practice knowledge, we argue, we’re unlikely to come up with solutions that work for people.
In contrast, our research, which was carried out with the rights-based organisation Changing Our Lives, talked direct to people with learning disabilities and/or autistic people in three long-stay hospitals. This wasn’t always easy – getting access to secure settings can be difficult, some people don’t communicate verbally, some people have committed very serious crimes and lots of people are very scared, angry and traumatised. Where we had permission, we also talked to people’s families and a series of different health and social care staff, as well as reading people’s case files and observing multi-disciplinary meetings. Where possible, we also followed up with people 12 months later to see what, if anything, had changed for them. All too often, little had.
Talking to people direct, we found a series of barriers to overcome before people could leave hospital and lead more ordinary lives in the community. Some of these, to name but a few, included:
- 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 coordinating 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 multiple hoops’ to try to prove they are OK to leave hospital.
- 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 our health and social care system.
These experiences are captured as ‘ten top tips’ in a policy guide sent to every health and social care leader in the country. They are also set out in a free training video for care staff and in accessible versions for people with learning disabilities. We have also worked with the Ikon gallery and Birmingham-based artist, Foka Wolf, to host an exhibition and billboard campaign – further amplifying voices that are seldom heard.
People with learning disabilities and/or autistic people in long-stay hospital know what kind of life they want to lead; they know that no one should ‘live’ in a hospital and they often know what would help them leave – the problem is that not enough people seem to be listening.