Making Positive Moves

Our aim

The Making Positive Moves research study aimed to identify what can help people with learning disabilities live long-term in the community after living in mental health hospitals, Assessment and Treatment Units and/or forensic institutions.

Following the Winterbourne View scandal, with footage of abuse shown on BBC Panorama, the 2012 Transforming Care Programme was set up to make sure people with learning disabilities who were living in inappropriate hospital placements were supported to move into their own homes. However, there is lack of research about what people with learning disabilities think about their move, and what they say is important to help stay living well in the community.

We spoke to 21 people with learning disabilities who had moved out of hospital, and 17 of these people also spoke to us again around one year later. We also spoke to some people’s family members and/or support staff. We asked people what it was like to move out of hospital and live in their own home, and what has made things easier or harder for them.

Our findings

We identified four key supports that form the foundation for a fulfilling life:

Feeling safe in relationships
Making choices
Belonging and keeping busy
Feeling happy with who I am.

We have created an animation video which explains our model in more detail. You can watch our video here.

Our approach

An inclusive research approach, and an emphasis on practical and meaningful outcomes to reduce inequalities, is key to this project:

Experts by experience are key to our project design and management. One of our co-applicants is an expert by experience advisor and he co-chaired our steering group and chaired our expert by experience consultation group. This consultation group was made up of people with learning disabilities who met every three months to discuss the project, and helped us make decisions and plan our next steps.
Alongside traditional academic dissemination routes, we also plan to produce guidelines, training resources and accessible reports and we will share these via a national stakeholder conference, charities and specialist networks.
We have a project website with practical resources for people moving home. We share blogs on here, with updates about the study and will share our findings on the Making Positive Moves website too.
Proactively identifying and engaging stakeholders has been key to our approach and will support our dissemination. This includes charities, advocacy groups, policy networks and professional groups.

Finding out what helps people to successfully live in the community will mean we can produce guidance and clinical tools that improve healthcare delivery for people with learning disabilities, their families and care staff, reduce admissions and readmissions to hospital, and improve quality of life in the community.

Contact

You can email Silvana Mengoni, or contact her on 01707 284494.

Funding

This project is funded by the National Institute for Health and Care Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-1217-20032). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

The NIHR have published our dissemination and impact plan as a case study example, you can find out more on the NIHR website.

Publications
- Beeken, F., Katsampa, D., Duxbury, M., Caird, H. E., Head, A., Prowse, S., Wellsted, D., Zormati, P., Mengoni, S. E., & Rhodes, L. (2024). Mapping stakeholders to maximise the impact of research on health inequalities for people with learning disabilities: The development of a framework for the Making Positive Moves study. British Journal of Learning Disabilities, 52, 443-455
- Stock, M., Mulholland, M., Cooper, V., Head, A., Prowse, S., Wellsted, D., Mengoni, S. E., Rhodes, L., & Ellis‐Caird, H. (2024). ‘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. British Journal of Learning Disabilities, 52, 633-643
- Head, A., Ellis-Caird, H., Rhodes, L., & Mengoni, S. (2021). “It was really good, she sort of took some words what happened, like what I would say”: Adapting dyadic interview techniques to capture the stories of marginalised voices in research. Qualitative Methods in Psychology Bulletin.
- Head, A., Ellis‐Caird, H., Rhodes, L., & Parkinson, K. (2018). Transforming identities through Transforming Care: How people with learning disabilities experience moving out of hospital. British Journal of Learning Disabilities, 46(1), 64-70.