End of Life Care Planning with People with Learning Disabilities

The Victoria and Stuart Project End of Life Care Planning with People with Learning Disabilities Toolkit.

We want to shine a light on the recently launched End of Life Care Planning Toolkit created for people with learning disabilities, their carers and the health professionals who support them. Congratulations to The Victoria and Stuart Project at Kingston University London. What an incredible research project and resource.

What is The Victoria and Stuart Project Toolkit?

The toolkit is the result of The Victoria and Stuart Project, a 2-year study to find the best ways of involving people with a learning disability in end-of-life care planning within social care settings. The project is named after two of the people who inspired the research project, Victoria Willson (1970 –2013) and Stuart Hasler (1978 –2020). Both Victoria and Stuart had learning disabilities, but as the researchers behind the project explain, they ‘were able, with the support of their families, friends and a team of professionals and services, to live fully until the end of their lives and die in the way they wanted – their own way’.

They go on to say that ‘The Victoria and Stuart Project is about finding the best ways to help people with learning disabilities plan for the end of their life. We want to make sure that people with learning disabilities get the right care and support when they are ill and going to die. We will work with lots of people to try and get this right’.

Victoria Willson and Stuart Hasler, The Victoria and Stuart Project, Kingston University London

Who Created the Project?

The project was led by Professor Irene Tuffrey-Wijne (Professor of Intellectual Disability and Palliative Care) and her team from Kingston University London, in collaboration with Dimensions, MacIntyre, The Mary Steven’s Hospice, and VODG. A total of 195 people were involved, including researchers with learning disabilities, families, support workers, managers, health and social care workers, policy makers and other researchers. The project was funded by the National Institute for Health Research.

What is in the Toolkit?

In the End of Life Care Planning Toolkit you will find both new and existing resources to facilitate good end-of-life care planning, including helpful guides, cards, mats and books.

The toolkit resources have been tested or developed by a co-design group of people with learning disabilities. There are also many interesting and inspiring webinars and videos which look behind the scenes, talk with the participants, and highlight different aspects and areas of interest that emerged as the project progressed.

This toolkit is an invaluable resource for people with learning disabilities and for anyone who is walking alongside them in their end-of-life journey. But the research team are not stopping there. For their next study, The Victoria and Stuart Project will be looking at the best way to deliver end of care and support, not just plan it. You can find out more about this new project here. We look forward to following their progress!

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