Leading researchers Cicely Saunders International and King’s College London are urgently calling for major reforms to the UK’s system of palliative care in response to a significant and persistent increase in demand caused by the Covid-19 pandemic.

Cicely Saunders International – the leading charity supporting palliative care and collaborating founder and partner of King’s College London’s Cicely Saunders Institute – has published You Matter Because You Are You, a seven-point Palliative Care Action Plan that identifies the major challenges now facing the palliative care system, and outlines evidence-based solutions for each of them.

During 2020, demand for palliative care surged, reaching levels of need similar to those which had previously only been expected to be reached in 2040. The wide-ranging impact of the pandemic on NHS services – including delays to surgeries and consultations, an increase in long-term conditions and changes to how health and social care is delivered – is anticipated to result in a sustained increase in demand for palliative care, exceeding previous forecasts.

The accelerated demand has highlighted and exacerbated existing shortcomings in the palliative care system, compromising patients’ care and affecting families and carers. The researchers say that urgent reforms are now vital to bring the palliative care system up to speed with new levels of demand.

The researchers warn that patients currently do not have enough choice or control over decisions taken about their care. Too many people with life-limiting illnesses – as well as those approaching death – are spending long periods of time in hospital unnecessarily, without the option of an alternative care setting. Meanwhile, hospital admissions have been rising to unsustainable levels across the country – and risk overwhelming parts of the NHS during the Covid-19 pandemic.

A lack of coordination and information-sharing between health and social care providers is restricting patients’ choices and compromising the quality of their care. The shortage of palliative care expertise, especially in social care and community settings is further compromising patients’ experience.

The Action Plan draws on research carried out by Cicely Saunders International by researchers in the Cicely Saunders Institute during the pandemic, as well as evidence from Government-commissioned reviews and independent reports. It sets out 24 achievable actions, each designed to improve the care patients receive and increase the efficiency of NHS services, ensuring the palliative care system can cope with the accelerated demand.

The Action Plan advocates a holistic approach to improving the provision of palliative care, identifying challenges and solutions across the health and social care system. It recommends reforms to the care delivered in hospitals, hospices, care homes, patients’ homes and in the community, as well as calling for an overhaul of the education and training for health and social care professionals, and greater investment in research.

A primary focus of the Action Plan is to increase and facilitate the provision of palliative care in all healthcare settings, in order to improve patients’ experience and alleviate pressures caused by unnecessary hospital admissions.

John McGrath, Chair, Cicely Saunders International, said:

'This landmark action plan draws on excellent independent reports – including Government-commissioned reviews – into palliative care. The value of getting palliative care right – for patients, families, carers and the NHS – has long been recognised, but systemic issues remain, hindering healthcare professionals’ work and compromising patients’ care. These issues are being exposed by the accelerated demand for palliative care caused by the Covid-19 pandemic, and must urgently be addressed.'

Marion Sumerfield, patient's family member, said:

'Perhaps this year, more than ever before, we have finally understood the true value of providing the best possible Palliative and End of Life Care. In order to do that, we have to provide a cohesive system that allows this to happen. All the work carried out by clinicians, researchers, patient and family members at the Cicely Saunders Institute contributes to this Action Plan, because it matters to the patient, to the people closest to them, and ultimately, it matters to everyone.'

Dr Kathryn Mannix, Palliative Care Physician, said:

'Access to support for wellbeing, person-centred care and excellent symptom management should be seen as a human right throughout life. It is time to recognise that people approaching death have the same rights, and to fund the services that will allow them to live well for the remainder of their lives. The foundations are not yet in place to deliver adequate palliative and end of life care to all who need it in the UK. The time to act is now, and this excellent report gives the blueprint for action.'

Dr Ros Taylor MBE, Palliative Physician, said:

'We have witnessed an avalanche of suffering in the last year, compounded by isolation and grief. We have a new awareness of our mortality. The need for palliative confidence and expertise in all settings, the sharing of skills across boundaries, the dissolving of bloated bureaucracy and an understanding of community compassion has been starkly unveiled during the Covid pandemic and I urgently welcome the solutions captured in this timely, succinct and relevant 7 Point Plan.'

Heather Richardson and Shaun O’Leary, Joint Chief Executives, St Christopher’s Hospice:

'The current pandemic has identified an important role, and some huge opportunities for palliative care to help reduce suffering of those who are dying and bereaved. It has also highlighted some of the significant challenges it faces including the finite capacity of professional services and inequality of access for those who could benefit. This action plan provides helpful guidance about how this unacceptable situation is redressed and as a large provider of palliative care services in South East London we support its recommendations.

In addition we urge policy makers, funders and other leaders to consider the role of communities in improving end of life, and in societal shifts that could complement and enhance the important work of professional services.'