Background Reports from the Learning Disability Mortality Register (2020) demonstrate that people with learning disabilities die younger than other adults. Many deaths are not in the place of choice, and people experience barriers to being involved in, and receiving, end-of-life care (Tuffrey-Wijne & Davidson, 2018. Int J Palliat Nurs. 24: 598). National documents,(Hospice UK, 2021; PCPLD Network and NHS England, 2017) and local council audits, also identify that domiciliary staff, caring for adults with learning disabilities, receive little education and support to care for the dying.
Aim To improve the end-of-life care for adults with learning disabilities in Essex, by increasing confidence and knowledge of care agency staff in the essentials of end-of-life care, and creating support networks to reduce barriers to care.
Method A local council, and three local hospices, have worked together since 2018, to create and deliver a three-day course to upskill domiciliary care agency staff giving end-of-life care (Griffith, Richmond, Harwood et al., 2021. BMJ Support Palliat Care. 11). This award-winning course was adapted to help address the inequality in care that adults with learning disabilities currently receive. Using an already well-evaluated course structure, with funding streams sourced by the council, allowed the adapted course to be delivered free-of-charge to agency staff.
Results So far, forty-four carers have attended the adapted face-to-face cascade training. 100% of the attendees felt that this course increased their confidence and ability to give end-of-life care. Areas of greatest improvement were advance care planning and communicating about dying. All attendees also felt confident to cascade the teaching to their colleagues, meaning that even more carers will benefit. Staff who attended can now join the collaboration’s Champions’ Days, held annually, to continue their learning in care of the dying, developing even stronger links with the council, their local hospice teams and other agencies, and address key areas highlighted in reports (Tuffrey-Wijne & Davidson, 2018).
Conclusion This project demonstrates the power of collaborative working to improve end-of-life care, and offers a model for other counties to replicate.
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