Leading an NIHR forum for improving palliative and end-of-life care across England

The NIHR ARC National Palliative and End-of-life care Forum is co-led by ARC East of England’s Palliative and End-of-Life Care Theme Lead, Professor Morag Farquhar and ARC South London’s Professor Irene Higginson. In this joint leadership role, the two ARCs have established a forum that brings together specialist palliative care researchers, patient and carer representatives, and clinicians from across England.

Aims of the National Palliative and End-of-life Care Forum

The National Palliative and End-of-life care Forum is designed to:

• Drive collaborative work across NIHR ARCs to maximise efficiency and impact for patients, public, health services and economic gain
• Foster collaboration with other NIHR parts and external partners including Health Innovation Networks, local authorities, charities, industry and national health and care bodies
• Respond to Department for Health and Social Care and NIHR requests for expert advice

In particular, the national forum seeks to:

• Identify opportunities for national practice impact
• Enhance research dissemination and knowledge translation
• Catalyse large-scale implementation
• Address national questions requiring collaboration

Generating and implementing research evidence 

The national forum has played a prime role in generating and implementing research evidence to improve palliative and end-of-life care. This includes advancing understanding of key challenges such as growing multimorbidity, variation in care quality, access and outcomes, new models of care, and the improvement and use of robust outcome measures to enhance service delivery, education and research. This work continues.

The forum has also supported collaborative approaches to research, delivering capacity-building workshops and seminars. It continues to inform and respond to national priorities for palliative care research, with a growing focus on improving equity in care outcomes and addressing disparities across patient populations.   

Launching a new webinar series

The NIHR ARC Palliative and End-of-life Care National Leadership forum has launched a new webinar series in 2024 featuring insights and discussions with leading experts. Topics included:

Webinar 1: Recruitment in palliative and end of life care studies

The first webinar took place on 7 October 2024, 11am-12pm and focused on recruitment in palliative and end-of-life research. It was attended by over 100 delegates and chaired by Professor Morag Farquhar and included presentations by Dr. Amy Gadoud (Lancaster Medical School), Professor Andrew Davies (Trinity College Dublin) and Melanie Waghorn (University College Dublin).

Watch the webinar below: 

Webinar 2: Breathlessness in palliative and end of life care research

A second webinar took place on the 2 December 2024, 11am-12pm, which focused on the symptom of breathlessness in advanced disease. This webinar was chaired by Dr Amy Gadoud (Lancaster Medical School and the NIHR Integrated Clinical Academic Training Lead). Presentations included Matthew Maddocks (King’s College London) and Morag Farquhar, ARC East of England's Palliative and End of Life Care Theme Lead (University of East Anglia).

Watch the webinar below: 

Webinar 3: What can we learn from international research on assisted dying?

A third webinar took place on the 4 February 2025, 10:30am-11:30am, which explored international research on assisted dying. More than 160 people including researchers, policymakers, members of the public and parliamentarians attended the webinar. Chaired by Morag Farquhar, ARC East of England's Palliative and End of Life Care Theme Lead (University of East Anglia), and featured presentations from Professor Nancy Preston (Lancaster University) and Professor Suzanne Ost (Lancaster University) presented their international research on assisted dying.

Watch the webinar below: 

Webinar 4: Building capacity in palliative and end of life research

The fourth webinar took place on Monday 14 April 2025 exploring the future of palliative care and highlighting the NIHR-supported Incubator, a new initiative to increase research capacity and drive improvements for patients, led by Professors Candy McCabe and Christina Faull. The webinar was chaired by Professor Irene Higginson, and included presentations by Professor Candy McCabe, Professor of Clinical Research and Practice, University of the West of England, Professor Christina Faull, a recently retired consultant in palliative medicine, and Kieran Potts, an academic clinician at North West Ambulance Service NHS Trust.

Watch the webinar below: 

Webinar 5: The health and caregiving experiences of parents of children with a life-limiting condition

The fifth webinar in the series took place on Tuesday 8 July 2025. It explored the health and caregiving experiences of parents of children with life-limiting conditions. It was chaired by Professor Morag Farquhar, University of East Anglia co-lead of the National NIHR ARC Leadership palliative and end of life care (PEoLC) and lead of the PEoLC theme for the ARC East of England.  Speakers included:  Julie Russell, an illustrator, teacher, and lived-experience advocate from Essex, Lorna Fraser, professor of palliative care and child health at King's College London and Dr Victoria Fisher, research associate at the Cicely Saunders Institute at King's College London. 

Watch the webinar below: 

Webinar 6: Timely access to end of life medication 

This webinar took place on Tuesday 16 September 2025.  It discussed the pressing issue of timely access to end-of-life medication. It opened with an introduction from Professor Morag Farquhar of the University of East Anglia, co-lead of the NIHR ARC Palliative and End of Life Care (PEoLC)  National Leadership. It was chaired by Dr Ben Bowers, University of Cambridge. Speakers included: associate professor Sarah Yardley and senior research fellow Dr Sally-Anne Francis, UCL,  Dr Rosanna Fennessy, University of Cambridge and Dr Ikumi Okamoto, University of Edinburgh. 

Watch the webinar below: 

Webinar 7: Access to palliative and end-of-life care for people with neurodegenerative conditions

This webinar took place on Wednesday 29 October 2025.  It discussed the issue of palliative and end-of-life care for people with neurodegenerative conditions. It was opened by Professor Morag Farquhar of the University of East Anglia, co-lead of the NIHR ARC Palliative and End of Life Care (PEoLC) National Leadership. 

The webinar was chaired by Emily Adams, stakeholder engagement and impact manager at DeNPRU Exeter. Speakers included: Jan Oyebode, professor of dementia care in Applied Dementia Studies at the University of Bradford and deputy director of DeNPRU Exeter, Karen Windle, professor of healthcare research and impact at the University of Ulster and a member of the Leadership Team at DeNPRU Exeter, Catherine Evans, interim director of Cicely Saunders Institute and clinical professor in Palliative Care, King’s College London and honorary nurse consultant, Sussex Community NHS Foundation Trust and Andy Bradshaw, a research fellow at the Cicely Saunders Institute, King’s College London.

Watch the webinar below: 

Webinar 8: Developing inclusive practices around consent and mental capacity in palliative care research

This webinar took place on Tuesday 18 November 2025. The webinar was chaired by Professor Irene Higginson, ARC South London's palliative and end of life care research theme lead, King’s College London, and co-lead of the NIHR ARC Palliative and End of Life Care (PEoLC) National Leadership programme. 

It opened with an introduction to the national context around inclusivity in research from Dr Katherine Jeays-Ward, research lead at NHS England. After this, Dr Caroline Barry, University of East Anglia, discussed a recent NHS England Research Engagement Network project to develop more inclusive practices around mental capacity and consent in palliative care research. Dr Victoria Shepherd, Cardiff University, then explored the ethical, legal, and practical challenges around research involving people with impaired capacity to consent.

Watch the webinar below: 

Our involvement in collaborative research

Through this national forum, we have initiated and participated in other national collaborative research projects, including:

• Better End of Life Care, a research programme examining evidence on the current state of dying, death and bereavement across the UK, proposing a new policy agenda. This is a collaboration between ARCs South London and East of England and Hull-York University
• We are bringing together survey data from the original CovPall project (in CovPall-Connect) with routinely collected data from across the UK to deepen our understanding of how Covid-19 is impacting on palliative and end of life care teams
• An NIHR research programme investigating the influence of ethnicity in opioid prescribing in UK end of life care, a collaboration between ARCs South London and East of England
• An NIHR programme called ‘PrimaryBreathe’ designed to improve the management of chronic breathlessness in primary care, led by ARC East of England, with ARCs South London, East Midlands, Yorkshire and Humber.

Catalysing collaborative approaches

In addition to the collaborative approaches above, the national forum provides capacity building opportunities to improve palliative care research and practice in England. Examples include:

• Training on public involvement in palliative care
• Seminars on anticipatory prescribing and palliative care within care homes
• Workshops on outcome measurement
• Co-production workshops with public members
• Seminars sharing learning from Covid-19 research (eg Online events explore latest research on role of palliative care in the Covid-19 response and implications for commissioning services).

Supporting areas where needs are greatest

Following an NIHR call for new research partnerships responding to areas of greatest need, we delivered a workshop in July 2021 to facilitate connections across stakeholders. Sixteen new partnerships were funded and launched in 2022, including: 

• Palliative and end of life care in rural, coastal and low-income communities (with University of Exeter and ARC South West Peninsular)
• Integration between primary and palliative care (with University of Sheffield and ARC Yorkshire and Humber)
• Functional loss and rehabilitation towards the end of life (with University of Nottingham and ARC East Midlands).

The ambition of each palliative care partnership was to forge new collaborations including clinical, academic and lived-experience experts, who will develop research proposals to the NIHR.

Informing national priorities and work

Within the framework of the forum, both the East of England and South London ARCs have informed national research and policy priorities. This includes providing advice to:    

• NHS England and Improvement (via the national clinical director for palliative and end of life care)
• Department of Health and Social Care (via the strategic adviser for palliative and end of life care)
• Care Quality Commission

Our researchers have also been involved in the development of the Cicely Saunders International Action Plan, which recognises key challenges in UK's palliative care system and provides evidence-based solutions to tackle these, with engagement across sectors.