Title: A Marie Curie good practice delivery model for EoLC in UK prisons
Funder: Marie Curie

Abstract: In 2021 MC undertook a review of how EoLC was being delivered within the South West prison estate and recommended how care could be improved. The report End of life care in prisons - Analysis of end of life/palliative care arrangements within the South West Prisons estate, May 2021 was provided to NHS England to support commissioning activity. During this work it was recognised there was not a consistent approach across prisons or MC for the delivery of EoLC. The report is a useful foundation on which to build a comprehensive framework for the delivery of EoLC in prisons. In this study, we build on this work by consulting with MC Staff, Advocacy groups and families and friends of prisoners to explore the needs and opportunities for improved EoLC and inform service provision and policy. Methods: Phase 1: Semi-structured qualitative interviews will be undertaken with: • Families and friends of prisoners who expect/expected to die in prison due to a terminal diagnosis • Personnel of Prisoner Advocacy organisations who have experience of providing support or advice for prisoners or their loved ones when a prisoner expects to die while in prison. Interviews will be transcribed and analysed using thematic analysis. Phase 2: A community of practice across MC will be convened and interviewed to gather intelligence into how EoLC is delivered for marginalised groups including the prison population, perceived gaps in provision and opportunities. Findings will then be shared and explored with other Palliative Care providers prior to finalising outputs Impact 1. Recommended delivery models and service packages will be identified which support the EoLC delivery needs of the prisoner, their families/carers and prison personnel. Recommendations will be presented in the context of the DWICC, as a mechanism to both deliver the defined standards in EoLC and a means of demonstrating evidence of doing so. 2. Establishment of a community of practice within Marie Curie

Lay abstract: Background Rates of deaths in prison have almost doubled in the last decade. Deaths from natural causes account for the largest proportion of deaths in prison. Prison healthcare aims to provide care equivalent to that received in the community. Recent evidence emphasises the need for improvement in end-of-life care (EoLC) delivery within prison environments, and consistently highlights obstacles to community-equivalent care and lack of understanding in how this can be achieved. Teams across Marie Curie (MC) provide support for prisoner care but there is no established sharing of best practice, nor is there a recognised model of how MC can support the provision of holistic end-of-life care in prisons. The Dying Well in Custody Charter (DWICC) is available however there appears to be a disconnect for prison personnel between the standards required and how they can be delivered. In existing research there is insufficient evidence from prisoners, their families and prisoner advocacy groups to illuminate prisoner perspectives. Methods This qualitative interview study will explore the views and experiences of prisoners’ families, friends and advocacy organisations to inform the provision of evidence-based EoLC in prisons. We will collate learning from interviewees and across MC staff to understand how services are, and could be delivered to prisons, recognising the challenges, constraints and range of needs of the prison population and its staff. Findings will be tested and explored through a sector wide workshop of palliative care providers. Impact Recommendations will be presented as an implementation guide for the Dying Well in Custody Framework to demonstrate a clear path to meeting the ambitions of the charter. This project will also result in the establishment of an internal network of Marie Curie Staff with an interest in supporting people in prisons with palliative care needs. .

Research activity codes: 7.2 END OF LIFE CARE;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE