People with a learning disability are three times more likely to die at a younger age than the overall population.1 Furthermore, they may experience inadequate end of life care through providers not recognising or considering individual needs.2
Mary Stevens Hospice delivers specialist palliative care to those with a terminal or life limiting condition. One of the hospice’s priorities is providing inclusive care to a wider, diverse community. The strategic vision includes expanding services, identifying marginalised groups and offering support to more people.
The learning disability champion project commenced in September 2017. Initial research explored barriers that people with learning disabilities may face at end of life. Introductory meetings with health care professionals from Dudley NHS, care homes/supported living and other organisations were received with interest and positivity.
The Dudley Voices for Choice charity employs people with learning disabilities and autism to deliver training on disability awareness. They said:
“Dudley Voices for Choice welcome the opportunity to work alongside Gemma and Rachael. They are true learning disability champions, passionate and committed to getting the service right for everyone.”
Consideration was given to how Mary Stevens Hospice could work in a proactive and integrated way, collaborating with others to break down barriers and open pathways between services, supporting people with learning disabilities now and in the future.
What have we achieved for people with learning disabilities?
- Staff champions trained in the Makaton method of communication
- Easy read, accessible material relative to end of life care and bereavement available to patients and visitors
- A local self-advocacy group were invited to conduct a peer review of services
- New visual signage on the In-Patient Unit
- Rewarded and recognised on Dudley’s ‘Safe Place’ scheme
- Quarterly learning disability and end of life care awareness newsletters
- Regular presentations to community organisations, networks and partnership boards, dispelling hospice myths and highlighting end of life care for people with learning disabilities
- Joint event planned with Mary Stevens Hospice and a local learning disability provider during Dying Matters awareness week
Community engagement has demonstrated a fundamental principle to the project, gathering thoughts and opinions from people with learning disabilities and providers to improve current services.
An attendee of the peer review group said:
“I really enjoyed coming to do the peer review. I felt that Rachael and Gemma listened really well to what we were saying. The hospice is already a friendly place and I can see it is getting more disability friendly.”
The hospice has committed to continue addressing discriminations vulnerable and disadvantaged groups experience, working collectively with others to make positive change for people with palliative care needs living in Dudley.
1 Heslop P, Blair P, Feleming P, Hoghton M, Marriott A and Russ L (2013) Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD): Final report. Bristol: Norah Fry Research Centre, University of Bristol.
2 Care Quality Commission, A different ending: Addressing inequalities in end of life care. Online
For more information visit Mary Stevens Hospice