PCPLD NETWORK
Charity Number 117355
- TRUSTEE ANNUAL REPORT (2024 2025)
Through the 2024-2025 period we continued to focus on the development of our new website. Whilst it is now public, it remains a work in progress, as we learn about website management.
The investment in the new branding has enabled us to project the image of the PCPLD further and encouraged us to consider materials that Trustees and supporters can use to publicise the charity.
Following our decision last year that we were unable to run a conference due to the financial commitment, the charity has joined with Kingston University as academic partners this year – and this has offered us the opportunity to arrange a conference using university buildings and admin support. We look forward to this event in July 2025.
This collaboration with Kingston University will hopefully mean we able to run further conferences – with an aim to do this bi-annually.
This year has seen a significantly smaller financial outlay due to the decisions made last year regarding expenditure. We also received an unexpected £1000 donation and have received a small amount of income from “Easy fundraising” donations.
The PCPLD Network remains committed to supporting research projects into Palliative Care for people with Learning Disabilities, and following the successful launch of the Victoria and Stuart Project resources at a conference in July 2024, we now have several members of the charity involved in the focus groups and professional advisory group for the DAPPLE project. The DAPPLE project is a co-researched and co-produced project looking at developing effective service models for adult palliative and end of life care for people with a learning disability.
In September 2024, Irene Tuffrey-Wijne decided to step down from the Charity, and having agreed earlier in the year to not award the Linda McEnhill prize for 2023 – we then decided to retire the award as we felt that its aim – to promote and recognise Best Practice in EOLC for people with Learning Disabilities – had been achieved. Each year it has been harder and harder to find a winner, with complex EOLC for individuals now becoming more typical practice, and increasingly financial diversity across nominees which has made the playing field rather uneven.
We remain hugely grateful to Irene for her dedicated support to the PCPLD, and for her on going work in this field.
Phoebe Mooney – who joined us as a Trustee in 2023-2024 has now been nominated and accepted as joint Chair alongside Sue Marsden, and Jane Nickels also joined us a trustee. Jane is a Learning Disability Nurse with a specialism in Dementia.
Sue Marsden
Chair PCPLD Network January 2026
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