The aim of this project is to address a significant gap in our understanding of the services provided by the hospice sector. We will ascertain the scale and nature of service provision by hospices for the years 2018/19, 2019/20 and 2020/21. The project is being undertaken in collaboration with Hospice UK, the membership organisation for hospices.
Why it's important
The Covid-19 pandemic has seen a huge shift in where patients are dying. While the majority of patients who died from Covid did so in hospitals or care homes, a third more people than usual died at home, almost all from other causes. Numbers of deaths in hospices fell. At the same time, services for people at the end of life were severely disrupted, with many services shifting to remote working as far as possible.
Hospice services are widely provided in the community and within acute hospitals. For example, in 2016/17, it is estimated that 212,000 people accessed direct support from hospices, and 179,000 received support in the community: this is a significant number against a backdrop of 607,000 deaths in the UK in 2017.
However, there is currently a significant gap in data on the provision of end of life care by hospices (the most recent data collected is from 2016/17). While survey data has indicated significant pressure on services during the pandemic, no activity data is routinely collected from hospices. This information is needed to fully understand the impact on services and patients, and inform future development of end of life care services.
What we'll do
Hospice UK will lead on data collection and initial analysis of data from member organisations, with input from the Nuffield Trust team to support the development of a robust data collection process.
The Nuffield Trust will lead on a detailed analysis of the data collected from hospices, drawing in other relevant data on end of life services and care needs, to build as complete a picture as possible of service provision over the last 3 years.
Subject to the data available from hospices, we plan to analyse variations in provision across the UK, including by region in England. We will also analyse activity data in the context of wider data on service provision and need, using comparable data from previous activity reports where feasible. We will work with Hospice UK to understand the coverage of the data collected, and the most robust approach to estimating national activity levels from the data available.
The main output from the work would be an independent report produced by the Nuffield Trust. The report will address the implications of our findings for quality of end of life care, and commissioning of hospice services.
The data collection will be undertaken during the late summer and Autumn 2021. We plan to report on the findings from the analysis early in 2022.
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