Award Title: Why are we stuck in hospital? Understanding service user, family and staff perspectives when transforming care for people with learning disabilities and/or autism
Funder: Department of Health and Social Care

Abstract: In recent years, there has been growing concern about the number of people with learning disabilities and/or autism living in long-stay hospitals. Although the UK decided to close asylums for people with learning disabilities from the 1960s onwards, there has been a growth in people admitted to so-called ‘assessment and treatment units’, with allegations that some people stay here for far too long, with little ‘assessment’ or ‘treatment’ that could not be provided elsewhere. Other people live in secure units or in an NHS campus where the previous hospital is still in the process of closing. Over 2,100 people live like this at the moment (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, are very expensive, can be a long way from people’s homes and families, and have seen a number of abuse scandals – just as was the case with the asylums of the 1960s._x000D_
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Despite this, there has been little research on why people with learning disabilities are delayed in such settings. In particular, previous debates have often failed to talk directly to people with learning disabilities, 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. In other research with older people, we have looked at these issues from the perspective of older people themselves, their families and care staff, as each group has a unique view on what is happening and might make a difference. Unless we listen to these voices we will not find solutions to these problems, and too many people will remain in hospital unnecessarily. Our aim here is to do the same with people with learning disabilities, their families and care staff, so that their voices are heard too. This will increase the chance that people can leave hospital in a timely way and lead more ordinary lives in the community._x000D_
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This is sensitive work, requiring skills in working with people who may not communicate verbally, where there is a risk that some people can be violent (as all of us can when we’re scared and distressed), and where there can be tensions around what is best. We have therefore included a skilled, experienced team who can carry out such in-depth work in a way that suits the needs of the individual. We also have strong relationships with local services, national policy and voluntary agencies working with people with learning disabilities in long-stay hospitals – and these will be crucial for the study’s success._x000D_
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We will produce a report and articles so that people can read what we have found. We will also produce a good practice guide (based on the experiences of people with learning disabilities and their families) and send this to every health and social care leader in the country. We will also produce a free training video for care staff who may not have access to as much training/support as they need. We will ensure our research is conducted well and produces helpful findings by working with a group of national advisors, chaired by a person with a learning disability. We will design our research materials with a group of people with learning disabilities and families, so that the questions we ask, how we get to know people and how we share our findings work really well for people with learning disabilities and their families.

Lay Abstract: 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._x000D_
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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._x000D_
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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:_x000D_
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 • 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)_x000D_
 • 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)_x000D_
 • Identify lessons for policy/practice so that more people can leave hospital and lead a more ordinary life in the community.

Research Activity Codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;8.5 RESOURCES AND INFRASTRUCTURE (HEALTH SERVICES)
Health Categories: MENTAL HEALTH