A team from The Open University School of Health, Wellbeing and Social Care will carry out a review on end-of-life care planning with people with learning disabilities as part of a wider research project. Led by Dr Elizabeth Tilley, the review is the first stage of a two-year study led by Kingston University and St George’s University of London aimed at improving end-of-life care planning for people with learning disabilities, made possible with funding from the National Institute for Health Research (NIHR).
The research project has been commissioned to help staff in learning disability services support the estimated one million people living with learning disabilities in England, two thirds of which are based in residential care or supported living settings when reaching the end of their lives.
“An inclusive approach to gathering robust evidence on end-of-life care planning was essential in addressing some of the long-standing health inequalities that people with learning disabilities face”, says Dr Tilley. “People with learning disabilities have a right to high quality, person-centred health and social care across the life course, and this includes support at end-of-life. This project tackles a major gap in our knowledge about inclusive and accessible end-of-life care planning, putting people with learning disabilities at the centre of the debate.”
Bringing together universities, not-for-profit support providers and people with learning disabilities, the study’s project team will include leading experts and industry professionals from the OU, The Mary Stevens Hospice, Voluntary Organisations Disability Group, and Dimensions and MacIntyre – two major national providers of support for people with learning disabilities.
The work of the OU team will focus on what is known about end-of-life care planning with people with learning disabilities, and what approaches and resources are already available. Working with a team of people with learning disabilities, family carers and healthcare staff, the project team will then select, and develop further, preferred approaches and resources identified as being most likely to work well with people with learning disabilities across a range of circumstances. MacIntyre and Dimensions will subsequently evaluate these approaches in practice through a pilot project with around 30 people they support.
This will allow the study team to develop and produce a toolkit of guidance, approaches and resources, as well as staff training materials. The toolkit will be made freely available online, helping healthcare staff and family carers learn how best to support people with learning disabilities in different scenarios.