RecruitingObservational

Equitable palliative care in the community through primary care

This study wants to make sure everyone gets good end-of-life and palliative care, especially those living in less well-off areas who often miss out. It will explore how local health services, such as GP surgeries and community nurses, can team up more effectively with specialist services, like hospices. Researchers will talk to patients, their families, and healthcare staff to understand what matters most to them. The goal is to find the best ways for these services to work together, improving care for people with serious illnesses across the UK and ensuring everyone has fairer access to the support they need.

At a glance

Status

Recruiting

Sponsor

University of Leeds

Enrolment target

Start

01 Nov 2025

Estimated completion

01 Dec 2027

Palliative and end of life care

What is this study about?

Imagine you or someone you care about has a serious illness that can't be cured. Palliative care and end-of-life care are about making sure you have the best possible quality of life, focusing on comfort and support during what can be a very difficult time. It's about providing help for however long it's needed – whether that's years, months, weeks, or even days.

However, in England, many people who could really benefit from this kind of care aren't getting it. This is especially true for people living in areas that are not as well-off. We know that local health services like your GP, community nurses, and pharmacies often provide a lot of this care at home or in care homes, but the quality can vary a lot from one place to another. Nowadays, these local services are trying to work more closely with special teams, like hospices, in what are called “Integrated Neighbourhood Teams”.

This study aims to understand how these new integrated teams can truly improve palliative and end-of-life care for everyone. We especially want to hear from people living in areas that face more challenges. By talking to patients, their families, and the doctors and nurses who care for them, we want to figure out what works best, where, when, and for whom. The findings will help the NHS make sure that in the future, everyone, no matter where they live or how much money they have, gets the fair and high-quality care they deserve.

Key takeaways

Aims to improve end-of-life and palliative care across the UK.
Focuses on people with serious illnesses and their families.
Wants to ensure everyone has fair access, especially in less well-off areas.
Explores how local health services can work better together.
Involves talking to patients, families, and healthcare staff.
Findings will help the NHS make future care recommendations.

Who may be eligible?

This study is looking for a few different groups of people to take part. This includes patients who are currently receiving palliative care, meaning support and comfort for a serious illness that can't be cured. We also want to speak to their family members or close friends who help look after them (these are called carers).

Additionally, healthcare professionals who work with these patients are invited to participate. This includes doctors, nurses, and other staff members, as well as people who help plan and lead palliative care services locally.

However, there are a few reasons why someone might not be able to join. For patients and carers, if the patient is under 18, or if their illness makes it impossible for them to have a conversation or give their permission to take part, they wouldn't be able to join. Also, carers can only take part if the patient has invited them. For healthcare staff, this study focuses on community-based care, so if you work only in a hospital, you wouldn't be eligible. Everyone taking part must be at least 18 years old.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Are you currently receiving palliative care, or are you a family member/carer for someone who is?
If you're a carer, has the patient you care for invited you to take part?
If you're a healthcare professional, do you work with palliative care patients in a community setting (not exclusively in hospitals)?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, it might involve being interviewed about your experiences or completing an online questionnaire. For patients and carers, this would be a chance to share what's important to you regarding your care. For healthcare professionals, you might be asked to join interviews or group discussions to share your ideas on how care could be better arranged.

The researchers will also look at medical records (with full permission) to understand different experiences. Part of the study also involves using computer models to see how new care ideas might work in practice. Finally, experts and members of the public will meet in workshops to plan how new care approaches could be put into action.

Your participation directly helps shape future care, but it won't change your current medical treatment. The study is planned to run from February 2025 to February 2028.

Potential risks and benefits

While taking part in this study may not directly change the care you are currently receiving, the information you provide is incredibly valuable. It will help make palliative and end-of-life care much better for people in similar communities in the future, particularly those in areas where care is often harder to access. There are no specific health risks involved in taking part. The main inconvenience might be the time it takes to complete an interview or a questionnaire. You are completely free to choose not to take part, or to withdraw from the study at any time, for any reason, without it affecting your medical care.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Academic Unit of Palliative Care
City only
Leeds, England

Common questions

What is palliative care?

Palliative care is support and comfort for people with serious illnesses that can't be cured, focusing on improving their quality of life. End-of-life care is similar, for people nearing the end of their lives.

Why is this study important?

It's important because many people don't get the palliative care they need, especially in poorer areas. This study wants to find ways to make sure everyone gets fair and high-quality support.

Will my information be kept private?

Yes, all your information will be handled carefully and kept private according to strict rules to protect your identity.

How long will I need to commit if I take part?

The time commitment will vary, but typically involves an interview or completing a questionnaire. The researchers will discuss the specific time involved with you.

Who is running and paying for this study?

The study is being run by the University of Leeds and is funded by the National Institute for Health and Care Research (NIHR), a major UK research funder.

How to find out more

Jacqueline Birtwistle

j.birtwistle@leeds.ac.uk +44 (0)1133436907 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.