This resource is aimed at commissioners, service providers and staff who care for and support anyone living with advanced illness towards the end of their lives.
It draws on real life case studies, a literature review, a focus group and a stakeholder consultation to highlight the challenges in providing high quality, personalised palliative and end of life care for Gypsies and Travellers, LGBTQ+ people and people experiencing homelessness.
This is a practical guide that explores different approaches to delivering and embedding personalised end of life care and describes simple and effective approaches.
Key points
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There are five key principles which underpin success in providing high quality, personalised care for Gypsies and Travellers, LGBTQ+ people and people experiencing homelessness:
Good communication, which includes engaging with people in a way that is meaningful for the individual and enables people to make informed decisions about their care.
An approach founded on dignity and respect, and investing in a relationship of trust.
Providing workforce training and support.
Enabling partnership working at a strategic level.
Recognising that people are all different and understanding that inclusive, equitable care is not about treating everybody the same way.
Ongoing strategic commitment, continuity planning and support from senior management are vital to ensure this work can continue if critical staff members leave the organisation.
Better and stronger data to inform commissioning and service development also emerges as a key cross-cutting theme.
Acknowledgements
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The following organisations worked together as the Tackling Inequalities in End of Life Care for Minority Groups VCSE project group:
Hospice UK
Marie Curie
Together for Short Lives (as the Palliative and End of Life Care Consortium within the Alliance)
Friends, Families and Travellers
Homeless Link
National LGB&T Partnership (the LGBT Consortium led on this piece of work on behalf of the National LGB&T Partnership).
This project was funded by the Health and Wellbeing Alliance, a partnership arrangement between NHS England, the Department of Health and Social Care and Public Health England.
Our thanks to the organisations that have provided case studies for this resource and those who participated in the focus group, workshop activities, or otherwise provided feedback and comment.
At Friends, Families and Travellers, our thanks to Ivy for organising the focus group held in December 2017 and to Lucy for providing a transcript from the event. Thanks also to Dr Sarah Russell, former Head of Research at Hospice UK, for her support and feedback.
