Making positive moves

The Making Positive Moves research study aims 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 plan to interview 20 people with learning disabilities who have moved from hospital to the community at two time points, one year apart. We will also invite people to identify a key support person to be interviewed with them. We have finished recruitment and aim to finish all our interviews by February 2023.

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-chairs our steering group and chairs our expert by experience consultation group. This consultation group is made up of people with learning disabilities who meet every 3 months to discuss the project, and help 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 here too: https://makingpositivemoves.org/
  • 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 details: Silvana Mengoni, s.mengoni@herts.ac.uk, 01707 284494

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: https://fundingawards.nihr.ac.uk/award/PB-PG-1217-20032

Our publications so far:

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.

https://researchprofiles.herts.ac.uk/portal/en/publications/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(0a46b15b-6d7f-437d-b047-435e4d261d67).html

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.

https://doi.org/10.1111/bld.12213