A collaborative approach is helping people with learning disabilities be better supported in conversations about death, dying and bereavement, leading to the creation of a tailored resource pack.
The Death, Dying and Bereavement Resource Pack is a cloth bag packed with materials to support difficult conversations about a life-shortening diagnosis, planning a funeral and coping with grief. It includes easy-read cards and information, as well as memory making activities.
2% of the population in Cumbria has a diagnosed learning disability.
The work was led by the team from Eden Valley Hospice in Carlisle and the Learning Disability team in north Cumbria for Cumberland, Northumberland, Tyne and Wear NHS Foundation Trust and funded by the North East and North Cumbria Integrated Care Board. It has been co-produced with providers of learning disability services over the last 12 months.
Liz Gittins, Social Worker at Eden Valley Hospice, said “The idea was to make these tricky conversations easier to have, so that adults with learning disabilities can have a more informed say about what they do and don’t want at end of life; to help them plan their own funeral or talk about the grief they feel after the death of someone they love.”
Wendy Turl, Specialist Learning Disabilities Nurse at Cumberland, Northumberland, Tyne and Wear NHS Foundation Trust, said, “Being able to develop these packs has meant lots of conversations with the professionals supporting this important group in our community. We have had to really think hard about what will help the people we support be able to have these conversations sensitively. The interaction and feedback have been invaluable as the packs were developed.”
Easy read images will help discussions about the type of funeral someone may want, the music and readings they may prefer and there are some practical memory activities such as fingerprint art.
The work has been supported by North Cumbria’s End of Life Partnership.
More than 25 organisations have shaped the packs, including:
- The Victoria and Stuart Project
- Macmillian Cancer Support
- Marie Curie
- Hand on Heart Jewellery
- NHS Charities Together
- The Good Grief Trust
- People First
- Mencap
- Every Life Matters Cumbria
- Cruse Bereavement Care
- Samaritans
- Child Bereavement
- DrugFam
- Tommy’s
- Child Bereavement UK
- Hospice at Home Carlisle and North Lakeland
- Hospice at Home West Cumbria
- District Nurses
- Palliative Care Nurse Specialists
- Bereavement Support Network
- British Association of Counselling and Psychotherapy
- The Compassionate Friends
- GriefChat
- The Silver Line
- National Bereavement Alliance
- The Glenmore Trust
The packs were launched in March at the Learning Disability Training Day held at the Carleton Clinic in Carlisle. Teams from the NHS and a range of local organisations supporting those with learning difficulties received a pack to aid their work.
If you want a bag or to find out more about the project, please contact: livingwell@edenvalleyhospice.org
