Abstract
Prior to undertaking a study looking at the effects of the COVID-19 pandemic upon lived experiences of hospice services in the West Midlands, we sought to identify the range of issues that hospice service users and providers faced between March 2020 and July 2021, and to provide a report that can be accessed and understood by all interested stakeholders. We undertook a collaborative multi-stakeholder approach for scoping the range of potential issues and synthesising knowledge. This involved a review of available literature; a focus group with hospice stakeholders; and a collaborative knowledge exchange panel. The literature on the effects of the COVID-19 pandemic on hospices remains limited, but it is developing a picture of a service that has had to rapidly adapt the way it provides care and support to its service users, during a period when it faced many fundamental challenges to established ways of providing these services. The impacts of many of the changes on hospices have not been fully assessed. It is also not known what the effects upon the quality of care and support are for those with life-limiting conditions and those that care for them. We found that the pandemic has presented a new normative and service context in which quality of care and life itself was valued that is, as yet, poorly understood.
Highlights
People with life-limiting conditions are highly vulnerable to COVID-19
We have found that there remains an urgent need to gather evidence of the on-going impact of the COVID-19 pandemic on hospice care, and use this to inform the current and future design and delivery of hospice services end-of-life care
By sharing what we found in this report, we hope to be able to provide a snapshot of how the COVID-19 pandemic is affecting hospices in the UK
Summary
People with life-limiting conditions are highly vulnerable to COVID-19. Alongside NHS care, they can expect to be supported by a network of informal carers and civil society organisations, including their local hospices. This report is written for all those who have a stake in hospice services, from patients, their families and those that care for them, through to clinical and non-clinical staff and the charities that run many hospices, as well as service commissioners and those that oversee healthcare policy and provision in the UK By sharing what we found in this report, we hope to be able to provide a snapshot of how the COVID-19 pandemic is affecting hospices in the UK
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