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Victoria Willson's story:

Webinars

We want to share our thoughts and findings with you throughout the project - not only at the end. This is to make sure that our research and toolkit make sense to and work for the people it involves. One way we are doing this is through webinars. We are doing a webinar for each of the stages of the project (Scoping review and survey, Focus groups, Co-design and Evaluation). Here, you can watch the webinars we have done so far. Future webinars will also be announced on this page.

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Webinar 5: Stuart's story

On 1st February 2024 we held our fifth webinar in collaboration with the PCPLD network. Chris O’Donnell, Sarah Pope, and Aneta Karnas shared the story of the life, dying, and death of Stuart Hasler, whom this project is named after. Stuart made his own end of life choices and was supported by a wide team of professionals, enabling him to be supported at home, say goodbye to friends, and to fundraise for the funeral he wanted. David Jeffrey (researcher with a learning disability) and Irene Tuffrey-Wijne chaired the webinar.

Webinar 4: New resources for end-of-life care planning

On 16th November 2023 we held our fourth webinar in collaboration with the PCPLD network. We presented the resources for end-of-life care planning with people with learning disabilities that we developed with our co-design group ('The All Together Group'). The three new resources are: 'Let's talk about funerals', 'My funeral cards', and 'When I'm ill".  The webinar was presented by Leon Jordan and Richard Keagan-Bull (both researchers with a learning disability) together with Irene Tuffrey-Wijne. 

Webinar 3: Resources to support end-of-life care planning

On 18th April 2023 we held our third webinar in collaboration with the PCPLD network. We presented our findings from a scoping review and survey of the resources available to support end-of-life care planning with people with learning disabilities. The webinar was presented by Professor Liz Tilley and Dr Lorna Rouse from the Open University who led the work. Richard Keagan-Bull (researcher with a learning disability) and Irene Tuffrey-Wijne chaired the webinar.

Webinar 2: End of life care planning with people with learning disabilities… What do YOU think

On 20th March 2023 we held our second webinar in collaboration with the PCPLD network. We presented some of the findings from our focus groups with 55 people with learning disabilities, families, support workers, service managers, palliative care professionals, learning disability nurses and policy makers from around England. The webinar was presented by Amanda Cresswell and Leon Jordan (both researchers with a learning disability) together with Irene Tuffrey-Wijne. 

Webinar 1: The Victoria & Stuart Project Launch

On 3rd May 2022 we held a webinar in collaboration with the PCPLD network to officially launch The Victoria and Stuart Project. Jean Willson shared the story of the life, dying and death of her daughter Victoria, whom this project is named after. Victoria had profound learning disabilities. She died at home following a two year illness. We were joined for the Q&A by Jean, Victoria’s father Norman, and Cat Sullivan who was part of Victoria’s Palliative Care Team

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