It is 10 years since Winterbourne View, the abuse scandal that led to the creation of the Transforming Care programme. The programme aims to improve care and services for people with learning disabilities and autistic people and reduce inappropriate admissions and length of stay for people in Assessment and Treatment Units (ATUs) and secure hospital settings.

Despite Transforming Care, numerous reports, some additional funding and some high profile cases that have drawn national media attention to the issue, there remain over 2000 people with learning disabilities and autistic people in long-stay settings.

Changing Our Lives has teamed up with The University of Birmingham on a two year research study (funded by the NIHR) to look at why people spend so long in hospital.  We believe that no one is too disabled and no one’s mental health is too complex to live an ordinary life in the community with the right support.  We want to find out from people with learning disabilities and autistic people who are stuck in hospital why they think they are stuck and how they want their life to look in the future.  We will talk to people in hospital settings, their families, the staff who support them in those settings and a commissioner or case manager from their local area to try to understand what the barriers are to them leaving hospital and living an ordinary life in the community.

As well as partnering with The University of Birmingham, as part of the study we are working with a reference group of people with learning disabilities, autistic people and family members (some of whom have lived experience of being in a hospital setting or having a family member in such a setting) who are helping to shape our approach.

“This research tackles a topic that is often overlooked. People with learning disabilities and autistic people can be sectioned for long periods of time, often years. This is usually because of unmet needs and because of a higher likelihood of mental health difficulties compared to people who are considered neurotypical. Despite an increased awareness of mental health in the media, there is little emphasis on how this translates to people with learning disabilities or autistic people. People like myself who are neurodiverse often have difficulties with communication. If our communication is significantly or consistently misunderstood by those around us we may communicate our frustration through our behaviour, and this can lead to us being labelled as challenging. Eventually, this breakdown in communication can lead to some people being sectioned."

- Zeze, Reference Group member