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 Stephen Barclay, professor of palliative care at the University of Cambridge.
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.
The national forum has helped to generate and implement research evidence to improve palliative and end of life care, particularly in relation to the Covid-19 response; supported collaborative approaches to research, including delivering a range of capacity building workshops and seminars; and informed and responded to national priorities for palliative care research and service improvements.
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
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.