A new two-year study aimed at improving end-of-life care planning for people with learning disabilities will be led by Kingston University and St George’s, University of London after receiving funding from the National Institute for Health Research (NIHR).
The project will be headed up by Professor Irene Tuffrey-Wijne (below, far left), leading learning disability and palliative care expert at Kingston and St George’s, and Dr Rebecca Anderson (below, second from right), research associate in the Centre for Health and Social Care Research, run jointly by the two universities. They will be supported by two researchers at Kingston and St George’s who have a learning disability in Richard Keagan-Bull (below, second from left), who was recently named one of the top 100 most influential disabled people in the UK, and Amanda Cresswell.
Bringing together universities, non-for-profit support providers and people with learning disabilities, the study’s project team will include leading experts and industry professionals from The Open University, The Mary Stevens Hospice, Voluntary Organisations Disability Group, and Dimensions and MacIntyre – two major national providers of support for people with learning disabilities.
The research project has been commissioned to help staff in learning disability services support the estimated one million people living with learning, two thirds of which are based in residential care or supported living settings when reaching the end of their lives.
“Learning disability services support staff are at the frontline of end-of-life care provision and planning but are often unprepared for this, lacking confidence and knowledge. They’ve asked for help in knowing how to get these discussions and planning right for the people they support, as people with learning disabilities can find it hard to understand what is happening and are rarely involved in ensuring their end-of-life care is given according to their wishes and preferences,” said Professor Tuffrey-Wijne.
During the first six months of the study, The Open University will lead a review to find out what is known about end-of-life care planning with people with learning disabilities, and what approaches and resources are already available. The wider project team will also hold focus groups with people with learning disabilities, their families and professionals, asking them for their views and preferences.
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 then evaluate these approaches in practice through a pilot project with around 30 people they support.
This will then 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.
The study builds on Professor Tuffrey-Wijne’s long-standing focus on research into the needs of people with learning disabilities at the end of life. This has included an innovative programme to give those with learning disabilities the chance to become researchers and inform and impact on research in the field.
“I often get asked if there is an easy-to-read end-of-life care plan that people can use. There are resources out there, but no evidence about how useful they are, or indeed about what people with learning disabilities themselves want,” Professor Tuffrey-Wijne said. “This study is a true collaboration and I am hugely excited about working so closely with people with learning disabilities, the services that support them, and many others, in finding answer to our questions.”
Ms Cresswell is delighted to be a part of the research team and said: “We want to be listened to and have our choice,” while another member of the GRASSroots group of people with learning disabilities who are advising the study team said: “You don’t want to think about your end of life, but one day it’s going to happen to you, so it’s good to think about.”
Sarah Swindells, health and wellbeing lead at Dimensions, which provides support for more than 3,000 people with learning disabilities across the UK and employs around 7,000 staff, said the project would lead to greater support being available to those with learning disabilities. “It’s an exciting study that will create a freely available toolkit of guidance, approaches and resources that is so very needed,” she said. ”Having people with learning disabilities involved throughout to advise the project team on what works and what doesn’t will only increase the confidence and knowledge of support staff when it comes to putting in place advance care planning for each person they are supporting,” she said.
The Open University’s Liz Tilley said 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. “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,” she said.