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P-9 Surveying the landscape: living, dying and remembering with a learning disability
  1. Ian Leech and
  2. Nikki Archer
  1. St Giles Hospice, Lichfield, UK


Background An aim of the funded learning disability project was to learn more about the knowledge base of the hospice staff around learning disabilities at end-of-life/bereavement; whilst also exploring how hospice care was perceived by those working in the learning disability community. National reports and research (LeDeR programme, 2018; Hunt et al., 2019; Heslop, Blair, Fleming et al., 2013; Oliver, 2017) have highlighted the need to improve end-of-life care and bereavement support for people with learning disabilities, so we explored our learning disability landscape through a survey.


  • To understand and identify the needs of those supporting people with learning disabilities from a hospice and learning disability perspective.

  • Explore levels of confidence of varying health and social care professionals when talking about death, dying and bereavement to someone with a learning disability.

  • Compare and contrast experiences and gaps in knowledge and experiences between hospice and learning disability carers.

  • Inform the content and process of the training programme.


  • The project steering group collaboratively developed a survey to establish baseline data and increase knowledge.

  • The survey shared with hospice staff and local learning disability organisations.

  • Survey thematically analysed outcomes to illustrate similarities and differences within and across data sets.

  • The data directly informed the three-session training programme.


  • Over 100 responses received, with a near equal split of hospice/non-hospice.

  • The replies are being thematically analysed.

  • The data directly informed the content and process of the training programme.

  • The project is currently being prepared as a paper for publication in a peer reviewed journal to maximise dissemination of outcomes.

Conclusion Learning is key in any project. By conducting the survey, we have learnt much about people’s levels of confidence, their understanding, and their training needs. The results of the survey have already influenced the project and when shared more widely, will help us develop a more compassionate community around people with learning disabilities.

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