The NIHR national forum is co-led by ARC South London’s Professor Irene Higginson, professor of palliative care and policy at King’s College London and ARC East of England’s Professor Morag Farquhar, professor of palliative care research at the University of East Anglia.
In this joint leadership role, the two ARCs have established a new forum that brings together specialist palliative care researchers and clinicians from across England.
Aims of the national 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 incuding Academic Health Science Networks (AHSNs) 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 is looking 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.
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 featuring insights and discussions with leading experts.
Webinar 1: Recruitment in palliative and end of life care research
The first webinar took place on 7 October 2024, 11am-12pm, and focused on recruitment in palliative and end of life research, It was chaired by Prof Morag Farquhar and included presentations by Dr Amy Gadoud, senior lecturer in palliative medicine at Lancaster Medical School, Prof Andrew Davies, professor of palliative medicine at Trinity College Dublin and Melanie Waghorn, senior research nurse University College Dublin. Watch a recording of the webinar.
Webinar 2: Breathlessness in palliative and end of life care research
The second webinar took place on 2 December 2024, 11 -12pm and focused on breathlessness. It was chaired by Dr Amy Gadoud, senior lecturer in palliative medicine at Lancaster Medical School and the NIHR Integrated Clinical Academic Training Lead. It included presentations by Professor Irene Higginson, OBE, on Better Treatments for Refractory Breathlessness (the BETTER-B programme), Professor Matthew Maddocks on Breathlessness Support Services and Professor Morag Farquhar on the Learning about Breathlessness (LaB) study. Watch a recording of the webinar.
View the slides:
- Mirtazapine to alleviate severe breathlessness in patients with COPD or ILD (findings from Better-B), Professor Irene J Higginson
- What works and what doesn’t for non-pharmacological treatments for breathlessness, Professor Matthew Maddocks
- What unpaid/family carers need to learn about supporting someone with breathlessness – and a web-based resource to support them, Professor Morag Farquhar
More resources and information:
- Better-B website: Better Breathe
- Better-B patient and carer brief: BETTER-B Patient and Carer Brief.pdf
- Paper: Mirtazapine to alleviate severe breathlessness in patients with COPD or interstitial lung diseases (BETTER-B): an international, multicentre, double-blind, randomised, placebo-controlled, phase 3 mixed-method trial
- Paper: Practice review: Pharmacological management of severe chronic breathlessness in adults with advanced life-limiting diseases
- Paper: Optimising breathlessness triggered services for older people with advanced diseases: a multicentre economic study (OPTBreathe)
- Paper: Should opioids be used for breathlessness and in whom? A PRO and CON debate of the evidence
- Support: Supporting Someone with Breathlessness
- Support: Managing chronic breathlessness - e-learning for healthcare
- Support: Shortness of breath - NHS
- Resources: Managing breathlessness in advanced illness
Our involvement in other collaborative research
Through the national ARC forum, ARC South London has initiated and participated in other national collaborative research projects. These include:
- 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 has provided new 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 three co-led by ARC South London:
- 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 is 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 ARC South London has 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.
Generating evidence and supporting implementation in relation to Covid-19
In the early phase of the Covid-19 pandemic, ARC South London used the forum to lead national collaborative efforts to synthesise and generate evidence to support the Covid-19 response (through our CovPall and CovPall Care homes studies).
These collaborative research studies uncovered the impacts of Covid-19 on palliative service innovation and activity, care planning, the role of volunteers, care of dying, rehabilitation services, staff experiences and equity for ethnic minority groups. Key publications and outputs include:
- The first publication on palliative care in Covid-19 worldwide: a survey of 14 hospice services across Italy about initial responses to the pandemic
- A rapid national patient and public consultation to guide palliative care research response
- A rapid systematic review of the role and response of hospice and palliative care in epidemics/pandemics to inform Covid-19 response
- A case series of 101 patients with Covid-19 referred to hospital palliative care services
- A multi-centre study of symptom management and outcomes of patients needing palliative care
- Evidence-based resources to support breathlessness management at home during Covid-19, shared via GP Networks and European Lung Foundation.
A national effort
Our partners at ARC East of England also undertook a range of work to support the Covid-19 response, including:
- An online survey to investigate clinicians’ experiences concerning changes in anticipatory prescribing (AP) - the prescribing of injectable medications for community end of life care in advance of need - during the Covid-19 pandemic and their recommendations for change
- Research to understand bereavement and grief of family members and care providers (read this blog: A silent epidemic of grief)
In fact, across England, NIHR ARCs have initiated nearly 60 research projects aiming to better understand and address the impact of Covid-19 on end of life care. This research explores a range of issues, including:
- Evaluating different treatments
- 'Just in case' medicines
- Representations of bereavement and grief in the media
- Impact on staff mental health of providing end of life care during the pandemic
- Role of technology in maintaining communication between care home residents and family
