Background People with a learning disability (LD) are three times more likely to die at a younger age than the overall population (Heslop, Blair, Fleming, et al., 2013). Furthermore, they may experience inadequate end of life care through providers not recognising or considering individual needs (Care Quality Commission, 2016).
Two LD champions were appointed, to examine how we support more people in the community from this marginalised group.
Aim(s) Increase accessibility for people with LD to receive coordinated, personalised, end of life care. Identify gaps in knowledge of hospice staff.
Methods Hospice peer review conducted by LD self-advocacy group. Opinions of LD providers and professionals canvassed. Presentations delivered through community engagement emphasising objectives.
Information pack produced, and training developed for hospice staff and volunteers. End of life care education scheduled for LD professionals.
Easy– read literature review, funds granted to adapt hospice information.
24 LD care home staff accessed ‘Palliative Care Champions’ training.
Interactive Dying Matters event for people with profound, multiple LD.
Staff trained in Makaton.
University partnership creating diversity/inclusion initiatives and research proposals.
Development of regional LD palliative care network.
Recognised as a ‘Safe Place.’
OutcomesFeedback from people with learning disabilities:
‘…they are true learning disability champions, passionate and committed to getting the service right for everyone.’
‘The hospice is already a friendly place and I can see it getting more disability friendly.’
Conclusions The project has addressed inequalities from this marginalised group’s experience. The programme is ongoing, ensuring people with a LD receive fair, accessible, inclusive end of life care, now and in the future.
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