Background We are committed to remaining an inclusive hospice and have adopted a community development approach to respond to national reports and research (LeDeR programme, 2018; Hunt et al,, 2019; Heslop, Blair, Fleming et al., 2013; Oliver, 2017) that highlight the need to improve end-of-life care and bereavement support for people with learning disabilities in England.
To enable the hospice to effectively monitor patients with learning disabilities accessing services, providing a more patient centred service.
Develop and support a network of local learning disability champions.
Deliver targeted, multidisciplinary training on best practice when supporting people with learning disabilities at end-of-life and through bereavement.
A local learning disability partner was sourced.
A steering group, including two members with a learning disability, oversaw the project.
A survey was developed and distributed.
Building on the survey outcomes, a focused programme around supporting people with a learning disability at end-of-life was developed and delivered by experienced trainers, in conjunction with two people with a learning disability.
Champions were recruited to develop and drive the work forward.
Better hospice systems of recording patients with learning disabilities.
New relationships with learning disability organisations developed.
Created a network of learning disability champions who will meet regularly to develop their knowledge; share good practice; and act as a conduit to inform future aspects of end-of-life care with this marginalised group.
Delivered a three-part training programme (informed by the responses from the survey).
Conclusion Bringing together local learning disability organisations has strengthened our ongoing commitment to develop compassionate communities. By adopting a community development approach to better understand the issues faced by people with learning disabilities at end-of-life and through bereavement, we have already identified issues and changed practice and there is real passion and determination to take this work forward through the network of local learning disability champions.
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