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Shining a spotlight on improving care towards the end of life

A new network has been established in the North East and North Cumbria to support better care for people with a life-limiting illness or who are approaching the end of life.

Palliative care is available when you first learn you have a life-limiting (terminal) illness. You might be able to receive palliative care while you are still receiving other therapies to treat your condition, and you may receive palliative care for months, years or possibly decades.

End of life care is a form of palliative care you receive when you’re close to the end of life.

These end of life care needs are greater and more complex in poorer areas, and providing services is often difficult in remote or rural areas – and the North East and North Cumbria has all of these challenges.

Research plays an important role in promoting high quality care and services, and patients and their families are central to this research; their views and experiences are crucial to shape research that meets the needs of real people and can make a difference.

To help to improve palliative and end-of-life care in our region, a new network – called the RIPEN Network (Research in Palliative and End of Life Care North East) has been set up.

The Network is hosted by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) North East and North Cumbria (NENC) and funded by NIHR through its Palliative and End of Life Care Partnership Funding Call 2021.

The Network brings together researchers and clinicians to develop and lead new research that can improve care experiences at the end of life. Its aim is to grow palliative and end of life care research in areas where patients and families are most likely to benefit.

Public asked to help shape research into end-of-life care.

The Network is now calling for people from across the North East and North Cumbria to come forward and join the group as public advisors – to share their views and experiences of palliative or end of life care, and to support research projects as they develop.

Kathryn Mannix, a Newcastle-based Palliative Care doctor, and best-selling author of ‘The End in Mind’ is a founding member of RIPEN and is supporting the development of a patient and public involvement group for the Network.

Kathryn said:

“I’ve spent my whole career working alongside people who are dying and learning from them and their families. End-of-life is unquestionably a difficult time, and clinicians and professionals who support those at the end of life know that the right care and support can make the process more comfortable for the patient and somewhat easier for their loved ones.

“Good research can help us to improve the quality of care we provide, but our research needs to be grounded in the real-world. This is why we’re looking to develop a regional RIPEN Public Involvement Network, so we can put patients’ and families’ views at the heart of our work.

“We’re keen to hear from people of all ages and from all walks of life, as we hope to establish a large and diverse group who can bring a wealth of different views and experiences from a wide range of backgrounds.”

Professor Barbara Hanratty from Newcastle University leads the RIPEN Network. She also leads the Multi-morbidity, Ageing and Frailty theme for the NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC).

Professor Hanratty said:

“Our RIPEN Network aims to strengthen the research we do here in our region, to ultimately provide better care for those approaching end of life. However, we can’t do this as researchers and clinicians alone. We need the public, patients, and their families to tell us what is most important to them, and to guide us along the way to make sure our research is meeting real-life needs.”

If you are interested in joining the RIPEN Public Involvement Network please email [email protected] in the first instance, and a member of the team will be in touch about how you can get involved.

Members of the public can decide how much time they’re able to give to support the work, and can receive remuneration (payment) for that time.

RIPEN network in the news

In April 2024, the RIPEN Network held its first research showcase event, which brought together researchers, professionals, and individuals passionate about palliative and end-of-life care.

You can read about the event on the Chronicle Online website