Background It is recognised that people with a learning disability do not access specialist palliative care services in the same way as their peers without learning disabilities; and that people with a learning disability may need significant reasonable adjustments to enable them to fully access all aspects of end-of-life care. To address this need, our hospice is currently undertaking a year-long project running until early 2022. A grant funded role of Learning Disability Nurse as End of Life Care Facilitator has been established.
The key aims are to:
Work across hospice and learning disabilities services, to understand and challenge gaps in knowledge and access for people with a learning disability.
Use the skills of both sets of teams, to support learning, and build sustainable resources, knowledge and relationships across all stages of palliative and end-of-life care – from early identification through to last days and bereavement.
Engage with local communities, to start conversations about death and dying– to ensure the right support is available for people with a learning disability, their families and carers.
Gap analysis across hospice and learning disabilities statutory provision to identify training skills and deficits indicates variance in confidence and knowledge about working with people with a learning disability at end-of-life.
Shared teaching programme commenced.
New resources available for hospice staff, and patients.
Engagement within the hospice environment – inpatient and community.
Engagement with community services, experts by experience, care providers, community groups to plan events and start the conversation about death and dying.
Increased recognition of the needs of relatives with a learning disability when caring for a parent, sibling, co-resident etc.
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