Our Achievements and Impact

The NIHR ARC Palliative and End-of-Life Care National Leadership Forum is driving collaboration across England to improve palliative and end-of-life care through research, innovation and knowledge exchange. By bringing together experts, practitioners, policy makers and people with lived experience, we have supported nationally significant research, strengthened partnerships, informed policy, and built capacity across the sector. Explore some of our key achievements and ongoing work below.

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.

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.