Why are we stuck in hospital? Understanding service user, family and staff perspectives when transforming care for people with learning disabilities and/or autism

Transforming care so that people with learning disabilities and/or autism can receive support at home rather than in inpatient units, secure settings or assessment and treatment units is a key government priority, which has significant implications for people’s quality of life as well as for public finances. Recently we have witnessed a series of abuse scandals and significant public anger at such outmoded service models, often provided out-of-area and in the commercial sector at significant expense and with poor outcomes.

A key aim of the ‘Building the Right Support’ and ‘Transforming Care’ programmes is to enhance community capacity and reduce inappropriate hospital admissions/length of stay. In spite of this some 2,185 people with learning disabilities and/or autism were hospital inpatients at the end of January 2020, 58% of whom had a hospital stay of over 2-years, and progress on discharge has been slow.

Despite significant national debate, very little previous research has engaged directly with people with learning disabilities or their families to understand the issues from their perspective. In research into older people’s hospital admissions and discharge, there has been a similar failure to consider the lived experience of older people and their families and our recent NIHR study (‘Who Knows Best’) is believed to be the first research to meaningfully consider these issues from the perspectives of older people themselves.

Whilst professionals often see the individual at a particular point in time (often in a crisis), it is only the person and their family who have a longitudinal sense of how their story has unfolded: their informal networks; their contacts over time with formal services; their experience of hospital; the different options considered; and what has ultimately helped/hindered in securing desired outcomes. Failing to take into account this lived experience is not only morally wrong, but also deprives us of a major source of expertise with which to improve services.

Similarly, there has been little consideration of the perspectives of front-line staff, who are being asked to practise in very different ways in a difficult environment, arguably without the support needed to do this well. This was also challenged in our ‘Who Knows Best’ research, seeking to value staff experience as a key resource to help develop better services/outcomes.

Against this background, the University of Birmingham and the rights-based organisation, Changing Our Lives, are conducting joint research to better understand the experiences of people with learning disabilities who have been stuck 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 new ways of working. Our aims are to:

• Review the rate and causes of delayed hospital discharges of adults with learning disabilities from specialist inpatient units, NHS campuses and assessment and treatment units (referred to as ‘long-stay hospital settings’ as a shorthand)

• More fully understand the reasons why some people with learning disabilities are unable to leave hospital, drawing on multiple perspectives (including the lived experience of people with learning disabilities and their families, and the tacit knowledge of front-line staff)

• Identify lessons for policy/practice so that more people can leave hospital and lead a more ordinary life in the community.