Background It has long been acknowledged that people with a learning disability have a poor life expectancy, sometimes experience suboptimal care at the end of life, and their loved ones can feel isolated and uncertain about where to seek support (NHS England and PCPLD Network, 2017; Heslop et al., 2014. The Lancet:383: 889). Local LeDeR reviews and national guidance indicate that families and paid carers require training and support in end-of-life care to avoid unnecessary hospital admissions and to promote their own wellbeing (NHS Wigan Borough Clinical Commissioning Group, 2020; Care Quality Commission, 2016). This data provided the rationale for the development of an end of life care support group for those important to the person with a learning disability.
Aims To bring service users together with health and social care professionals to:
Share knowledge, experience, concerns, successes, and challenges of families/those important to an individual living with a learning disability.
Overcome or manage challenges in an inclusive way.
Identify education and support needed, and how to facilitate this.
Methods Purposive sampling was used to identify group members and was a collaboration between the practice development team and complex care learning disability service. The launch was part of Dying Matters Week, held at Wigan and Leigh Hospice.
Results Nine participants attended the launch of the support group, including family members currently supporting someone with a learning disability, bereaved families, and paid carers. Their stories corroborate the findings of NHS reports and work of Graham et al. (2020), who highlight carer anxiety regarding end of life care situations, the importance of the carer in articulating changes in behaviour, and the need for robust after death support (NHS England and PCPLD Network, 2017; NHS. Improving end of life care for people with intellectual and developmental disabilities, 2019; Graham, Mcardle, Wilson, et al., 2020. Nursing Times. 116:18). The desire for a safe space to share experiences was a unanimous finding.
Conclusion The support group launch revealed a desire and need for effective links between specialist palliative care services and carers of people with a learning disability, in order to reduce isolation, and develop meaningful strategies to aid knowledge and resilience.
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