The Victoria & Stuart Project (2022-2024)

How can we involve people with learning disabilities in end of life care planning?


Easy-read information

Information about the study (Scientific Abstract & Plain English Summary)

Introducing Victoria & Stuart (and our project) in this short video:

This two year study starts in April 2022.

Project Team Members

Kingston University: Prof Irene Tuffrey-Wijne (lead), Dr Becky Anderson (co-lead), Sarah Gibson (day-to-day project manager), Richard Keagan-Bull, Amanda Cresswell, Leon Jordan, Jo Giles.
The Open University: Dr Elizabeth Tilley
MacIntyre Care: Nicola Payne, Merle Davis
Dimensions: Sarah Swindells
Voluntary Organisations Disability Group (VODG): John Shaw
The Mary Stevens Hospice: Gemma Allen

Project Collaborators (Advisory Group)

Victoria’s mother: Jean Willson
Stuart’s team: Chris O’Donnell, Vicky Main
NHS England / NHS Improvement: 
Sherree Fagge
Learning Disability England: Samantha Clarke
Marie Curie: Sam Royston
Marie Curie/Royal College of General Practitioners: Catherine Millington-Sanders
Macmillan Cancer Support: Adrienne Betteley
Making Families Count: Beverley Dawkins
PCPLD Network: Annie Stewart, Peter Allum
Dudley Voices for Choice: Vince Peters, Sarah Offley
Battersea Healthcare CIC: Jo McIlmurray
Compassion in Dying: Verena Hewat
With the End in Mind: Kathryn Mannix
Care Quality Commission: Jeanette Blackburn
L’Arche: Lucy Winters
Kingston University: Prof Tushna Vandrevala
University of Otago (New Zealand): Nic McKenzie
Netherlands Institute for Health Services Research: Hille Voss

This project is funded by the National Institute for Health Research (NIHR) Research for Social Care (RfSC), Research for Patient Benefit (RfPB) Programme: NIHR202963. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.