The Covid-19 pandemic continues to cause a huge strain on health care services and has meant more challenges for people with advanced diseases and/or those who need palliative care.
Palliative care aims to control symptoms and reduce suffering even when patients cannot be cured. NHS and voluntary palliative care services provide symptom management and support for patients and those important to them in hospitals, the community, patients’ homes, care homes and hospices.
While we know from the UK-wide CovPall survey that palliative care services have been very busy during the pandemic and changed how they worked, we believed by studying national routine information about care services, we could learn whether the national and regional impacts of the pandemic were related to changes palliative care services made. We also wanted to engage patients and the public in this discussion.
Through this funded research project we aimed to explore the relationship between death rates and how busy palliative care services were during the pandemic, we looked for patterns in national health and care data from England, Wales, Scotland and Northern Ireland and where possible linked these data with the CovPall study data.
To better understand views on how health and social care areas could be improved to meet public and patient needs and to identify priority areas to focus on within our research, we held a Patient and Public Involvement (PPI) workshop with 16 individuals who had experience of life-limiting illnesses.
We also held a Researcher’s Exchange meeting, where researchers and clinical academics within the Cicely Saunders Institute commented on neglected areas of national data collection.
What did we find?
- National data can be used to explore palliative care service activity
- Palliative care services responded most in areas with high levels of Covid-19, including higher hospital admissions and deaths where Covid-19 was mentioned on the death registration
- 70% of palliative care services in London (region with the highest Covid-19 death rates) reported being busier since the pandemic
- There were higher Covid-19 death rates in regions with a population of more than 5% non-white ethnic groups and those where services reported in the CovPall survey they had become much busier since the pandemic.
- There were higher Covid-19 death rates in regions with a population with more than 20% over the age of 65 and those where services reported in the CovPall survey they had become much busier since the pandemic
- Discussions during the Patient and Public Involvement workshop highlighted the need for person-centred care (that adjusted for patient characteristics and preferences), capturing the quality of care and patient’s experience, and highlighting inequalities in care
What are the implications of our findings?
- Both NHS and voluntary palliative care services responded actively and appropriately to increased demands in their areas
- All palliative care services should be considered integral to any pandemic response and should be funded alongside NHS services, whether charitably or NHS managed
- Routinely collected data should include patient experience and relevant palliative care outcomes
- Palliative care should be a key priority for Integrated Care Systems and the Health and Social Care Bill
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