Stuck in Hospital: The Power of Partnership

Posted 2024.01.14
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The Changing Our Lives and University of Birmingham team reflect on the research project for which they were awarded an Innovation in Inclusion Award at the HSR UK Conference 2023. Their work asked the question ‘Why are we stuck in hospital?’ and sought to understand the perspectives of people with learning disabilities and/or autistic people, family, and staff when transforming care for people in ‘long-stay’ hospitals. Watch the team’s full presentation here: ‘Stuck in Hospital’: how can we make integrated care a reality for people with a learning disability and/or autism.

When we started our project about why people with learning disabilities get stuck in hospitals for long periods of time, we knew that there was likely to be a bias towards the views and interests of clinicians and policy makers in the evidence available. Our scoping review revealed this was even starker than we expected, with an absence of the voices of people with learning disabilities and / or autistic people themselves across all the academic literature concerning delayed discharges or length of stay for people with learning disabilities in hospital settings. The review made it clear how urgent it was to not just include, but actively champion the voices and experiences of the people who are stuck, and the professionals working directly with them.

The original idea for the project was initiated through discussion with Changing Our Lives, a human rights charity with extensive experience working in secure hospital settings. They were central to the design and delivery of the research and ensured that every part of the project was informed by practice knowledge and lived experience. They brought the patience, flexibility and time needed to build relationships with people in these settings, which is built into their practices and planning. For example, one participant was a selective mute: multiple visits were needed to create familiarity and safety with our researcher, as well as to explore what methods of communication (talking mats, visual tools and so on) might work best with that person.

In a more traditional research project, it is hard to make room for this kind of flexibility in staff time and costing bids, because it appears unproductive, but without it, several people would have been unable to take part and the nuances and depth in the stories of those who did take part would have been lost. In addition, being up to date with training on tools such as Easy-Read and having specific skills for working in secure settings were invaluable. Seeing the person behind their diagnostic or behavioural labels, managing risk and de-escalating potential violence and aggression were part of Changing Our Lives’ normal activities, so we were able to make use of this tacit knowledge rather than starting from scratch with a generic training programme or set of resources.

What emerged through the course of the project was shocking – even to us as experienced researchers in the field. We spoke to people with learning disabilities who had been living in hospitals for years - some for decades. We heard from people who were transferred from prison to hospital with no estimated discharge date. Other people told us they had moved from hospital to hospital throughout their lives, perhaps going to family or to specialist placements for a time but returning when their living circumstances broke down and/or their mental health deteriorated. We heard from staff - as well as people in hospital - who were utterly frustrated with lengthy waits for treatment, and by the months or years it took for specialist housing and support packages to be established for those who were ready to leave. People told us they had waited weeks or months for small increases in their permitted leave within the hospital grounds or the community to be processed by people in government departments who had never met them.

Without the dual roles of Changing our Lives and the University of Birmingham, we would not have been able to uncover and investigate the system wide struggles for people with learning disabilities and/or autism. The benefits of wider partnerships were shown in many other ways in the project. These included gaining invaluable insights from practice and policy networks and working with the Ikon gallery to bring a different framing of the findings and share the voices of participants with new audiences.

As a research team we are truly honoured to have been able to hear and tell the stories of this hidden group who deserve the opportunity to lead the lives which they would choose.

Rebecca Ince, Robin Miller, Jon Glasby & Anne-Marie Glasby

University of Birmingham & Changing Our Lives