ARC East of England’s Palliative and End-of-Life Care Theme are working closely with colleagues at ARC South London, co-leading a national NIHR forum for improving palliative and end-of-life care services in 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.
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 a recording of the webinar.
A second webinar took place on the 2 December 2025, 11am-12pm, which focused on the symptom of breathlessness in advanced disease.
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.