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P-11 ‘Mind the gap’ – widening access to hospice care for people with a learning disability
  1. Sue Marsden,
  2. Eirian Levell and
  3. Colin Twomey
  1. St Wilfrid’s Hospice, Eastbourne, UK


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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