New report examines equality in end of life sector

Hospice UK has launched a new report looking at the inequalities in access to end of life care some people experience.

Here Hospice UK's CEO Tracey Bleakley outlines what needs to be done, and how we can work with the whole sector to ensure that everyone - no matter who they are, where they are or why they are ill - receives the best possible care at the end of their life.

Everyone has the right to high quality care and support at the end of life. But many people are still not enabled to access the help they need in their final days and months.

Inequalities of access and standards of care are particularly felt by those who have already encountered unfairness and discrimination throughout their lives.

This is not acceptable. We - palliative and end of life care services, commissioners and partners - must do more and do so quickly.

High quality care doesn't have universal reach

The hospice sector rightly prides itself on leading the way in designing and delivering high quality and innovative care.

However, high quality does not equate to universal reach which is why, like Hospice UK, many hospices are putting addressing inequalities at the heart of their strategies. This drive within our sector reflects a wider movement in society, in the UK and at a global level.

Hospices and other end of life care providers equally have a responsibility to ensure that everyone who needs it can access the care they want and need in a way that reflects who they are.

The onus must be on the sector to listen, reflect, innovate and advance so that people from all communities are included, along with their families and carers.

No-one should be "hard to reach"

People are not ‘hard to reach’, and no-one should be made to expect or assume a reduced level or quality of service because of who they are.

A service that is ‘open to all’ is not enough if the service continues to be structured on an outdated and unsuitable demographic model.

As part of our successful negotiations with governments across the UK for hospice funding support during the COVID-19 pandemic, we asked hospices about their ongoing work to open up services to all parts of their community.

We are very grateful to the more than 100 hospices who responded - many of their developments are included in this report and many more will be used in the future.

A change in emphasis is underway and progress to reach further into communities to meet unmet and under-met need can be found throughout the UK. However, it is clear, from looking at population level data, research and from listening to people’s stories, that there is still an incredibly long way to go.

Individual projects or recruiting to new roles in pursuit of equality are to be welcomed, but the ambition must be for a fully embedded culture of inclusivity across everything we do as a sector.

Lived experience must shape action

This will require renewed energy, resource and dedication from all involved to keep evolving and developing services.

Staff will need to be adequately supported, particularly after tireless work to combat COVID-19, in order to have the capacity and capabilities to take on this challenge.

Action shaped by lived experience must lead the way. Equally, national and local policy priorities including resourcing, efforts to drive integration of services and implementation of models of population-based commissioning will need to build an environment that facilitates the required change in provision of services.

What we will do

Through the Equality in Hospice and End of Life Care report we aim to provide a snapshot for ourselves, and for the sector, of practice, academic research, progress and ways forward.

Hospice UK will act in response to the findings of this report, listening to and sharing people’s stories, exploring reasons why services are still not engaging fully with some parts of our communities, and put forward recommendations for change.

The first in a series of deep-dive reports focused on imprisoned people, has just been published on our website.

We look forward to working with all partners, both within and beyond hospice and end of life care, as we seek to address existing inequalities and ensure we achieve our vision ‘that everyone, no matter who they are, where they are or why they are ill, should receive the best possible care at the end of their life’