Podcast Series of the PCPLD Network
Episode 4: When deaths go wrong – the story of Richard Handley
13th July 2021: Involving people with intellectual disabilities in end-of-life decisions. In this webinar, we hear the opinions of people with intellectual disabilities about being involved in end-of-life decisions. Rosie Joustra and Rachel Silver (MacIntyre) talk with me about their opinions and experiences, and we also hear from the GRASSroots group. Research teams from the Netherlands and Australia will present their recent work.
9th February 2021: Supporting people with learning disabilities in bereavement. Speakers include Irene and Baroness Sheila Hollins. Irene also supports a meeting with the GRASSroots group, talking together about bereavement.
25th September 2020: DNAR orders for people with learning disabilities. Irene talks with Yolanda van Boven (mother of Floortje, who has profound and multiple learning disabilities) and Baroness Ilora Finlay (chair of the National Mental Capacity Forum) about the implications and (un)suitability of DNAR orders.
9 October 2020: This webinar was recorded as part of the City Lit Mental Wealth Festival. Coping with illness, death and dying during the pandemic with Professor the Baroness Sheila Hollins in conversation with Dr Kathryn Mannix and Professor Irene Tuffrey-Wijne to discuss the difficult topic of coping with illness, death and dying. The global pandemic has brought the issue into sharp focus for many of us during 2020. The panel discusses the fear of death and dying and the wealth of emotions it elicits. They also discuss explaining death and dying to adults with intellectual disabilities and how to support them through the grieving process.
16 September 2020
1st video: Planning ahead for the end of life with people with learning disabilities.
A 20 minute talk by Prof Tuffrey-Wijne, including two filmed interviews with Jean Willson (family carer) and Louise Heatley (support worker).
2nd video: End of life care planning for people with learning disabilities: Are we prepared?
The 1st video was part of this 1.5 hour webinar from the PCPLD Network, chaired by Prof Tuffrey-Wijne
It includes two other keynote speakers (Dr Kathryn Mannix and Baroness Ilora Finlay) and interviews with six people with learning disabilities.
10 June 2020: What does good end of life care planning look like? What should you talk about, how, and when should you talk about it? Big questions. It’s hard enough for any of us to plan for our time of declining health and dying. Much harder, still, for people with learning disabilities. And much, much harder still at this time of Covid-19.
There is a danger that we talk about it at an unhelpful time or in an unhelpful way. This danger is greatest if there is a tick-box approach to “end of life care planning” (or, as it is often called, “advance care planning”), where the focus is on completed paperwork rather than on communication.
In this webinar, Professor Irene Tuffrey-Wijne talks about what end of life care planning is (and what it isn’t), and talks through her top tips on how to approach this with people with learning disabilities. She will also discuss some of the particular challenges we face now, during Covid-19, in relation to end of life care planning.
29 April 2020: Irene Tuffrey-Wijne has spent the past two decades researching the needs of people with learning disabilities who reach the end of life, and those who are bereaved. What are the challenges and difficulties for families, support staff, professionals and service providers? Crucially, what do people with learning disabilities themselves think about all this?
One of the big questions everyone struggled with was TALKING ABOUT DYING. Should you? Could you? How? Who? When? Much of her research over the past decade has focused on these questions.
In this webinar, Irene draws on this research to think and talk about the impact of coronavirus (Covid-19) on people with learning disabilities and those that support them.