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.

Outcomes

• 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.