The Dying to Talk Project aims to test solutions to break down the barriers people with a learning disability experience regarding end of life care, death and dying. It’s being funded by the National Lottery, who have awarded MacIntyre almost £170,000.
I will work alongside the Project team and two other consultants – Irene Tuffrey-Wijne, Professor of Intellectual Disability and Palliative Care who is one of the foremost experts in the world on this topic, and Willen Hospice, who MacIntyre have a long-standing relationship with through the joint work they’ve undertaken in Milton Keynes.
The Project will be phased, and will include specific work with the people MacIntyre support, families, staff and external professionals. The Project’s focus will be on 4 pilot areas (Derbyshire, Leicester, Worcester and Herefordshire), with the hope that in the future we could roll it out to more areas where MacIntyre have services if we can secure further funding.
I know from my own experiences as a Consultant with MacIntyre since 2013 how valuable this work will be. Over the years I’ve visited 30+ MacIntyre services, and one of the key themes from those visits is how in-depth training for staff in end of life care planning and delivery was very much needed and wanted. I look forward to working on the Dying to Talk Project to start making those improvements, not just for staff but for the people with learning disabilities and/or autism that MacIntyre support, alongside their families.
UPDATE – September 2021
UPDATE – January 2022