‘What’s going to happen to us next?’

Some 2,000 people with learning disabilities and autistic people are patients in hospital settings, often for many years with no sense of when they might be able to leave. 

Lots of people are trying to help them come out of hospital and lead more ordinary lives.

However, we know little about:

• What happens to people when they leave hospital
• What types of support help them to stay healthy and well

Hospitals have told us that they sometimes work with someone for 5 years or more – but then don’t know anything that happens to them next when they leave hospital. This means that we can’t possibly know whether we’re supporting people well or how well our plans have worked in practice.

This study follows on from our research into people’s experiences in hospital. This was called ‘Why are we stuck in hospital’.

• Aims and methods

  This new research will try to meet people and the staff who support them as they are coming out of hospital, then meet them again each year over two years. A team which includes people with learning disabilities/autistic people will work with the person to see what their life is like, where they live, what sort of support they are getting and the connections they have to other people and their local community. We would also talk to hospital and social care staff.

  We aim to talk to 30 people with learning disabilities and/or autistic people over time, through one large provider, two medium providers and three small providers. We want to talk to a mix of people from different backgrounds, and will make sure that this includes some people from black and minority ethnic communities.

  Our research team is skilled and experienced at:

  • Working with people with learning disabilities and/or autistic people and their families
  • Handling issue of capacity and consent
  • Working in creative ways to help people express their views. 

  This includes people who might not communicate with words, and people whose behaviour is sometimes seen as ‘challenging’ services.
   

• Planned outputs (current project)

  At the end of the project, we will know more about people’s journeys and experiences after hospital, and about what sorts of support help people lead ordinary lives in the community.

  We will use this information to produce:

  • A policy guide for social care and health leaders
  • A training video for care staff
  • Accessible versions for people and families
  • An art exhibition and billboard campaign to raise these issues with the public

  Research like this was important when the old ‘asylums’ closed. It helped show that things were better in the community, helped us understand people’s journeys through services and helped us think about whether we needed to do more to support people with particularly complex needs.
   

Why are we stuck in hospital?

Project website – Why are we stuck in hospital?

Although the main ‘Why are we stuck in hospital?‘ study was funded by the NIHR Health and Social Care Delivery Research (HSDR) programme and the exhibition by the Economic and Social Research Council (ESRC), the project was awarded funding in the last phase of the School to tour the powerful exhibition to increase its impact.

Two additional exhibitions took place at galleries in Sheffield and Brighton.