Improving end-of-life care planning for people with learning disabilities will be the focus of a new two-year study that aims to produce a toolkit of guidance, approaches and resources, as well as staff training materials. 

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.

It will be headed up by Professor Irene Tuffrey-Wijne, learning disability and palliative care expert at Kingston and St George’s, and Dr Rebecca Anderson, research associate in the Centre for Health and Social Care Research, run jointly by the two universities. They will be supported by two researchers Richard Keagan-Bull and Amanda Cresswell who have a learning disability.

The project will also include leading experts and industry professionals from The Open University, The Mary Stevens Hospice, Voluntary Organisations Disability Group, and Dimensions and MacIntyre.

Lack of knowledge about end of life care planning

Professor Tuffrey-Wijne said: “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."

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.