Equality in Hospice and End of Life Care: Challenges and change
Published on: 26 May 2021
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Everyone has the right to high quality care and support at the end of life, no matter who they are, where they are or why they are ill. But many people are still not able to access the palliative care and support they need.
This report uses data and research to identify groups of people who are being excluded from end of life care, and looks how the hospice sector can tackle inequity in access.
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Equality in hospice and end of life care - May 2021
This report is the first in a series of reports focussing on equity of care. It uses a range of recent academic research and wider sources of data to shed light on the barriers people face in accessing care and looks at some excellent examples of good practice, while also considering what more needs to be done at a sector level.
This report is intended as a springboard for Hospice UK to work with the palliative and end of life care sector to promote equity.
Key points
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People from the following groups are amongst those being excluded from receiving high quality palliative and end of life care:
An ageing population, living with frailty and dementia
People in prison
LGBTQ+ people
People experiencing homelessness
People living with learning disabilities
People living with non-malignant conditions
People living in poverty, deprivation, and with lower socioeconomic status
People living in remote and rural areas
Racialised communities.
As a sector we must engage with and listen to individuals, communities and organisations with lived experience at every opportunity. It is essential that initiatives to drive change are evaluated and evidenced through research involving people from the disadvantaged groups identified in the report.
We should also take an intersectional approach, considering how people might be discriminated against based on multiple characteristics such as race, gender and socioeconomic status.
Contributors
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Dominic Carter; former Head of Policy & Advocacy, Hospice UK
Melanie Hodson, Head of Information Support, Hospice UK
Dr Richard James, Public Health, Leeds Teaching Hospitals NHS Trust
Rini Jones, former Policy & Advocacy Officer, Hospice UK
Professor Kate Flemming, former Head of Research and Clinical Innovation, Hospice UK
Helen Malo, Policy & Advocacy Manager, Hospice UK
Tracey Bleakley, former CEO, Hospice UK
We are grateful to the many hospices who provided examples of their good practice and researchers for their work, which has helped shape this document.
