Birmingham Hospice has been leading a major project to improve the end of life experience for people with learning disabilities and autism across Birmingham and Solihull.
Just three per cent of people with learning disabilities or autism who may have benefited from hospice care were able to access it last year, with communication difficulties, complex physical conditions and a lack of knowledge of individuals’ needs and requirements all contributing to low take-up of support.
The hospice formed a working group alongside other organisations that support people with learning disabilities and autism including community and voluntary organisations and primary care services, as well as people with lived experience of learning disabilities and autism.
Head of Community Development and Partnerships Suzanne McArthur said: “We needed to do something about that huge gap where people who have got learning disabilities and autism are not getting a good end of life care experience or accessing bereavement support”.
A focus group held with Midland Mencap, to help co-design a bereavement awareness training programme for non-clinical staff supporting people with learning disabilities who are dealing with grief, explored what the current barriers might be – including lack of confidence in staff to address the topic of grief, and communication tools not designed for people with learning disabilities and autism.
Suzanne added: “What we noticed very early on is that people have got a reluctance to talk about bereavement and grief with people who have got learning disabilities.
“Success will be that we have a positive impact on the number of people with learning disabilities being supported with their grief and accessing good end of life care as they approach the end of their lives. At the moment, it’s only three percent; actually it should be 100 per cent and we shouldn’t be targeting anything less.”