#99 The Victoria & Stuart Project: helping people with learning disabilities plan for the end of their life

In this episode it is my pleasure to meet the team behind the Victoria and Stuart Project, a tool kit and resource for end of life planning for people with learning disabilities within all care settings.

I learn about the triggers for the project, how the work developed and find out about the incredible resource that has been created.

Key messages from our discussion

• Irene, Amanda & Richard share how they met and started working together

• We explore about the assumptions people make about people with learning disabilities

• Richard and Amanda share their career and achievements and challenge societal preconceptions about what people with learning disabilities can achieve

• Irene describes the projects and stories that led to development of the Victoria and Stuart Project

• Irene, Amanda and Richard describe how the all together group formed and their preliminary findings

• Short, simple and easy to understand information was found to be missing in information about Advance Care Planning

• We explore the potential complications and confusion around language and the challenges this can bring

• Creating picture cards was found to be an effective way to develop resource for the Victoria and Stuart Toolkit

• Advance Care Planning is described as planning a life not a death

Resource

• Access The Victoria & Stuart Project end-of-life care planning toolkit

• Access other resources from the Palliative Care for People with Learning Disabilities Network.

• Access No Barriers Here website 

• Watch the The Victoria & Stuart Project Launch webinar to learn about Victoria Willson's story from her mother & others from her team.

• Listen to the podcast: Advance Care Planning and Learning Disabilities with Sue Marsden

• Listen to the podcast No Barriers Here with Gemma Allen &  Dr Jed Jerwood  

• Don't Put Us Away Memories of a Man with Learning Disabilities By Richard Keagan-Bull: https://www.criticalpublishing.com/dont-put-us-away  

• Access the Victoria & Stuart website 

• Access the PCPLD Network webinars and podcasts 

• Watch the The Victoria & Stuart Project Launch webinar to learn about Victoria Willson's story from her mother & others from her team.

• Connect on Twitter:

  • @PCPLDNetwork

  • @TuffreyWijne

  • @VictStuProject

  • @LearningDisEng

  • @BILD_tweets

  • #LearningDisabilityWeek

  • @RcnLDForum

Bio: 

The Victoria & Stuart Project Team (Kingston University London) is a multi-award-winning, inclusive team of researchers, working on an NIHR-funded study on developing guidance and resources for involving people with learning disabilities in end-of-life care planning. Co-production is at the heart of this project. The team is led by Prof Irene Tuffrey-Wijne (Professor of Intellectual Disability and Palliative Care). The team includes four research assistants with a learning disability: Richard Keagan-Bull, Amanda Cresswell, Leon Jordan, and David Jeffrey; their support researcher Jo Giles; andresearch associates Dr Becky Anderson-Kittow, Dr Andrea Bruun, and Sarah Gibson. See: www.victoriaandstuart.com