About this event
Should people with learning disabilities be involved in decisions around the end of life? If your answer is “Yes, they should”, the next questions arise. When should you start planning? Who should be involved? And perhaps most difficult of all: HOW? Plus: what if the person doesn’t want to think about it, or cannot understand abstract concepts like future, death, dying?
These are some of the questions that the Victoria & Stuart Project is trying to answer. The project has an inclusive team of researchers led by Professor Irene Tuffrey-Wijne at Kingston University London. Their research partners are Open University, MacIntyre, Dimensions, VODG and The Mary Stevens Hospice.
For this year’s webinar series, the PCPLD Network is collaborating with the Victoria & Stuart Project, exploring end of life care planning in depth and bringing you some of the early findings of the project.
The project started with asking people about their opinions on end of life care planning. The voices of people with learning disabilities themselves are particularly important, and we have used creative ways of exploring their views. We held 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.
In this webinar, we will share with you what they said about WHY, WHO, and WHEN – and what that might mean for HOW. Some of the findings may surprise you. They will certainly make you think.
The webinar is presented by Amanda Cresswell and Leon Jordan (both researchers with a learning disability) together with Irene Tuffrey-Wijne. It will be of interest to anyone working with people with learning disabilities, anyone working with people at the end of life, families and carers, policy makers and commissioners. People with learning disabilities are also welcome to watch the webinar. Most of the webinar is accessible, although there may be some difficult words and concepts. We recommend that you don’t watch it on your own, but with other people; and that you take some time to talk about it together afterwards.
