Background: Transforming care so that people with learning disabilities and/or autistic people can receive support at home rather than in hospital settings is a key priority, but progress has been slow. Despite significant national debate, little previous research has engaged directly with people in hospital, their families or front-line staff to understand the issues from their perspectives.
Objectives: This research seeks to better understand the experiences of people with learning disabilities and/or autistic people in long-stay hospital settings, their families and front-line staff - using this knowledge to create practice guides and training materials to support new understandings and ways of working.
Design: Following a structured review of the literature, we sought to work with up to 10 people with learning disabilities and/or autistic people in three case-study sites (2021-22), supplementing this with interviews with family members and commissioners; interviews/focus groups with hospital staff, social workers, advocates and care providers; information from case files; and observations of multidisciplinary meetings.
Setting: Three 'long-stay' hospital settings in England.
Participants: Twenty-seven people in hospital, together with families, health and social care staff and commissioners.
Results: • People in hospital report widespread frustration, feel that hospital environments are not conducive to getting/staying well, and face multiple barriers to leaving hospital. Without someone to fight for them, people struggle to overcome the inertia built into our current systems and processes. • Front-line staff are equally frustrated and describe a complex and seemingly dysfunctional system which they find almost impossible to navigate. • Hospital staff from different professional backgrounds do not have a shared sense of how many people really need to be in hospital or how many people could be cared for in different settings - suggesting that different definitions, world views and professional judgements might be at play. • Hospital staff are frustrated about what they see as the difficulty of discharging people into community services, while community services are equally frustrated about what they see as a risk-averse approach which they feel can lack an up-to-date knowledge of what is possible to achieve in the community. • Despite over a decade of policy attempts to resolve these issues, very significant barriers remain.
Limitations: This research explored the experiences of a small number of people, but has done so in significant depth. The research was undertaken in secure settings, during COVID and in a difficult external policy and practice context, and so has had to be very flexible and empathetic in order to build relationships and make the research possible. Future research could helpfully consider the needs of people from black and minority ethnic communities, the extent to which the experiences of people on forensic pathways are similar to/different from other people's experiences (including perspectives from the criminal justice system), and what happens to people in the long term after they leave hospital.
Conclusions: Working to make the voices of people with learning disabilities and/or autistic people (as well as the staff who support them) centre stage is complex and sensitive. However, this lived experience/practice knowledge is a crucial resource if we are going to develop better policy and practice solutions in the longer term.
Study registration: This study is registered at www.researchregistry.com (researchregistry6124).
Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR130298) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 3. See the NIHR Funding and Awards website for further award information.
Keywords: AUTISTIC PEOPLE; DELAYED HOSPITAL DISCHARGE/DELAYED TRANSFERS OF CARE; LONG-STAY HOSPITALS; MIXED METHODS; PEOPLE WITH LEARNING DISABILITIES; REINSTITUTIONALISATION.
Around 2000 people with learning disabilities and/or autistic people are living in hospital. This can be for many years. This is a real problem because hospitals: are not designed to help people to lead ordinary lives; are expensive; can be far away from people’s homes and families; have had a number of abuse scandals. Despite this, there is little research on why people remain stuck in such settings. In particular, previous research often fails to talk directly to people with learning disabilities, their families and staff. Unless we listen to these voices we will not find solutions to these problems. Too many people will therefore remain in hospital unnecessarily. This is sensitive work. It requires skills in working: with people who may not communicate verbally; with people who might be very angry, scared and distressed; where there can be tensions around what is best. We therefore included an experienced team who could carry out such in-depth work in a way that suits the needs of the individual. We also worked with a group of people with learning disabilities and/or autistic people and their families to help us do our work well. We found that: lots of people are still stuck in hospital; they are very frustrated and distressed; hospital is a difficult place to be while you are waiting to leave. Once you are in it is very difficult to get out; health and social care staff are also very frustrated. They find it almost impossible to help people leave hospital; hospital staff and community services find it difficult to work with each other; government has promised to solve this for more than 10 years. However, there are still lots of problems.