Hospice Care in the UK 2017: from numbers to insight

Access to hospice and other forms of expert palliative and end of life care is currently inequitable. People with conditions such as dementia, heart and liver failure, lung disease and frailty, who would benefit greatly from such care, are not seen in or referred to hospice care services in the volumes that reflect the incidence of these conditions across the population of the UK.

In addition, many groups experience disadvantages towards the end of life and do not have easy access to appropriate hospice services. These groups include certain faith groups, LGBT (lesbian, gay, bisexual and transgender) people, homeless people, prisoners and people from the traveller community.

Such exclusion may be implicit or explicit, where a person may not feel able to be their whole self when using services, or that a referral was not forthcoming, or not taken up, because it was not understood that palliative and hospice care could support their needs.

None of us are any one of these things in isolation; we are our faith, who we love, our heritage, our diagnosis, all at once. Yet we know almost nothing of how multiple characteristics might compound or otherwise affect inequalities in access, or how we use the different types of services available, and our outcomes.

In this briefing we highlight the variety and scale of data on palliative and end of life care collected from services by statutory bodies across the four nations of the UK. Although much data is collected on the activity of services and a variety of proxy measures for quality or equity of access, we are still some way from the level of detail and capacity to combine and explore data to develop insights and practical ways forward.

The first step must be knowing more about who needs and who uses care.

Written by Kathleen Caper at Hospice UK.

Consultancy: Ben Ingber.
Data analysis: Ian Ansell.

Hospice UK is grateful to the hospices who provided data about their services which has informed this report.

We are also incredibly grateful to The National Garden Scheme for their continued support of hospice care in the UK.

Published by Hospice UK in November 2017.