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As many as 1 in 4 people, who could benefit from palliative and end of life care, do not receive appropriate support. This is despite a consistent approach to reducing inequalities in national policy spanning decades and changes in the academic grounding and application of services.  

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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.

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.

Hospice UK along with Marie Curie, Together for Short Lives and others, have produced a resource outlining work in progress to improve personalised end of life care for Gypsies and Travellers, LGBT people and people experiencing homelessness.

Offering top tips and describing simple effective approaches for success, this practical guide is intended for commissioners, service providers and those involved in caring for and supporting children, young people and adults living with advanced illness towards the end of their lives.

The project was funded as part of the national Voluntary Community and Social Enterprise (VCSE) Health and Wellbeing Alliance.

Challenges and change

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At the heart of Hospice UK’s organisational strategy is a goal to tackle inequality and widen access to hospice care. In 2021, Hospice UK released Equality in hospice and end of life care: challenges and change, which identifies specific groups which are excluded from high-quality end of life care. These identified groups are:

  • Racialised communities 
  • People experiencing homelessness 
  • Imprisoned people 
  • LGBT+ people 
  • Remote and rural areas
  • An ageing population, living with frailty and dementia 
  • People living in poverty, deprivation, and with lower socioeconomic status
  • People living with learning disabilities
  • People living with non-malignant conditions 

This document uses a range of recent academic research and wider sources of data to shed light on the current position and look 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 us, as Hospice UK, to work with the palliative and end of life care sector to tackle inequality.

Prisons

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Everyone has a right to high-quality care and support at the end of their life, including people in prison. In the past 10 years alone, deaths in prison from natural causes have risen by 77%, creating an urgent need for end of life care. However, research shows that this need is not being adequately met. 

A prison sentence is not a sentence to poor quality care. In Hospice UK’s 2021 report, Dying Behind Bars, our analysis of reports of investigations into deaths in prisons in England by the Prisons and Probation Ombudsman revealed examples of: 

  • Inappropriate use of restraints on people in prison at end of life 
  • Inequivalent care to what would be received in the community 
  • Delayed or no consideration of compassionate release for people in prison imminently facing end of life 
  • A lack of bereavement support for people in prison and staff following a death in the prison.

The report also assessed the extent of the work by hospices in this area, finding that 15% of hospices in England provide support to prisons, and made recommendations to Government, national organisations and hospices to promote better end of life care for people in prison. 

Off the back of this report, Hospice UK has been working to increase the profile of the need for better end of life care in prisons and share examples of good practice. We held a webinar, with 250 attendees, on end of life care in prisons on 18 January to shine a spotlight on the need for reform. 

To find out more about our work in this area and how you can get involved email policy@hospiceuk.org.

End of life care for trans communities

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Trans and gender-diverse people frequently experience unequal access to health and care services, and the same is true for care at the end of life.

As an end of life community, we must take responsibility for ensuring that trans people have access to the same high quality experience that everyone should expect.

“This goes beyond simply accessing available care. Trans people have the right to feel accepted, welcomed and supported when receiving end of life care.

Jonathan Ellis, Director of Policy, Advocacy and Clinical Programmes

As part of Hospice UK’s commitment to promoting equality within the end of life sector, we are committed to understanding the barriers faced by trans, intersex and gender diverse people when accessing end of life, hospice and palliative care.

We want to understand the needs and concerns of trans, intersex and gender diverse, members of staff, carers, family members and loved ones, alongside the needs of patients.

Hospice UK is currently undertaking a research project to understand the concerns of the trans, intersex and gender diverse communities, as well as make recommendations for improving end of life care, more details of which are included below.

The research we produce will allow Hospice UK to support hospices in ensuring equal access to people within trans communities, with care that reflects them and their needs.

We are looking to partner with, hear from and learn from organisations with experience and views in this space. Please get in touch with policy@hospiceuk.org to find out more.
 

Being Ready – a project in partnership with GIRES

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‘Being Ready’ is a project researching trans, intersex and gender diverse experiences of dying, death and bereavement - and is part of Hospice UK’s wider work on equality, diversity and inclusion.

We know that across the country, groups of people and communities are missing out on palliative and end of life care services. Good palliative and end of life care services are led by an individual person’s needs; this project is about understanding and informing ourselves of those needs.

Very little is known about trans, intersex and gender diverse people’s experience of palliative and end of life care currently, and this is a knowledge gap we feel we can help to address with our partners.

To address this gap, we’re running a survey through which we aim to hear directly from trans, intersex and gender diverse people, and better understand their experiences.

The survey opened on 15 June 2022, with reporting on our findings coming later in 2022.

We’re conducting this survey in partnership with GIRES and Stonewall.

GIRES are a UK wide organisation whose purpose is to improve the lives of trans and gender diverse people of all ages, including those who are non-binary and nongender.

Stonewall is a lesbian, gay, bi and trans rights charity in the United Kingdom. It is the largest LGBTQ+ rights organisation in Europe.

For any queries regarding the survey, please contact being.ready@gires.org.uk.

A note on language

Throughout this project we use the terminology trans, intersex and gender diverse. We understand there are many different views on which terminology is the best to use, and that different people choose use different terminology to refer to themselves.

  • Our definition of trans includes anyone whose gender, lack of gender, or genders is not the same as, or does not sit fully with, the gender they were assumed to be at birth.
  • Intersex refers to people with a range of variations in sex characteristics that a person is born with which do not fit neatly with societal expectations of male or female bodies.
  • Gender diverse includes genders outside of western binary models, as well as anyone whose gender, lack of gender, or changing sense of gender is not always the same as the gender they were assumed to be at birth.