'The whole thing is beyond stress': Family perspectives on the experience of hospitalisation through to discharge for individuals with severe learning disabilities and complex needs

BackgroundPeople with severe learning disabilities and complex needs are more likely to experience delayed discharge from hospital; however, there is little research into their experience in hospital and as they move out as part of the Transforming Care Programme.MethodsSix family members of people with complex needs who had moved out of hospital took part in four focus groups co-facilitated with an expert-by-experience consultant. Participants' relatives had hospital admissions that ranged from 6 weeks to 11 years. Transcripts were analysed using reflexive thematic analysis. Additional reflections are included from an expert-by-experience consultant to capture their unique perspective.ResultsFamily members reported stories of abuse in hospital and parallel experiences of institutionalisation and trauma, resulting in long-lasting impacts on themselves and their relative. Family members felt let down and undervalued by professionals. They described relief when their relatives moved out of hospital, but there were on-going difficulties accessing the right support in the community and so stability felt fragile.ConclusionsKey recommendations to support community living include respecting family members' expertise, improving partnership working and offering psychological support for family members and people with complex needs post-discharge. We wanted to understand the experiences of families of people with complex needs living in a mental health hospital and moving out of hospital. Family members talked about how difficult the experience of being in hospital had been for their relative and for themselves. Family members felt very unsupported and let down by professionals. Family members talked about feeling relieved that their relative had moved out of hospital. There had been lots of on-going problems accessing the right support for their relative. Family members and their relatives need specialist support to help the person with complex needs to live in the community and out of hospital.