Background The CIPOLD (Heslop, Blair, Fleming, et al., 2013) study found that people with learning disabilities (PWLD) died on average 13 years (men) or 20 years (women) sooner than the average UK population. Despite 57% of studied deaths being ‘expected’, only 20% received support from specialist palliative care services (Heslop, Blair, Fleming et?al., 2013). Initial consultations with PWLD, their families, and professionals in Cardiff and the Vale found limited knowledge of palliative care services and this lack of awareness limited access to services.
Aims The Big Lottery funded Improving Access project aimed to identify barriers to PWLD accessing palliative care services and implement activities to reduce these.
Methods 12 organisations and 54 individuals consulted, including PWLD, families/carers, health and social care professionals. Project advisory group includes a PWLD and inclusion of PWLD was key to the project’s success.
Results Consultations identified the following needs:
Improved community engagement and education to increase awareness of services.
Opportunities for PWLD to be supported to talk about end of life
Varied formats of accessible information.
Project delivering the following activities:
Education and workshops to professionals, PWLD, and carers on topics including bereavement and advance care planning. Audiences included learning disability teams, attendees of the Learning Disability Wales annual conference, and bereavement teams.
Promoting Marie Curie Easy Read materials.
Working with PWLD to develop ‘what to expect’ videos that can be used to educate PWLD about hospices and palliative care.
145 people reached through face-to-face events.
Conclusion The project has increased internal staff awareness of the challenges PWLD face in accessing services so that these needs can be considered in shaping and delivering services. It has improved awareness of palliative care services for PWLD, carers, and professionals and created opportunities for PWLD to talk about end of life. Involvement of PWLD is vital in reaching more people and ensuring the voices of PWLD are heard and included.
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