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Hi there,
This week, Bureau Local has shed light on the impact of the coronavirus pandemic on some of the most overlooked people in society — those who depend on social care in their own homes during a time when being home became most people’s new normal.
Statistics released by the Office for National Statistics (ONS) last summer showed there had been a remarkable increase in the number of deaths of people in receipt of domiciliary care in England — even when deaths attributed to Covid-19 were taken out. However, those figures covered just a three-month period in mid-2020, which led us to question where the rest of the data was and how it came to be collected.
We learned that due to the continuing increase in deaths in the adult social care sector and an interest in deaths at home, the ONS had decided to include domiciliary care deaths in its updated release, following conversations with the Care Quality Commission (CQC) as the data source.
Our own conversations with the social care regulator since February informed us that whatever figures we could obtain via Freedom of Information request on the death toll in domiciliary care, would be an undercount. At least 25,000 people died in the past year while receiving personal assistance in England and almost 3,000 people died in Scotland, our story uncovered — but what about the rest who haven’t been counted because of inconsistent data collection?
In which parts of the country were there steeper rises in the number of reported deaths, and why? And how could we develop an investigation that also sought to make the lives of care at home recipients more visible?
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Covid-19 accounts for a minority of deaths
Despite Covid being “a disease of inequality”, as one council’s public health director put it, and home care serving some of the most clinically vulnerable people, it became apparent that the virus itself wasn’t the main reason for the rise in deaths.
Our data suggests nearly 9% of the small proportion of deaths the CQC was notified about were Covid-19 related, though that rose to 20% in some areas of England between April 2020 to March 2021. In Scotland, around 12% of deaths were confirmed or suspected cases of Covid-19, according to data obtained from the Scottish Care Inspectorate. However, the 70% increase in total deaths in Scotland from 2019 has prompted both the head of Scottish Care and Scottish Labour’s health spokesperson to call for home care deaths to form a key part of any future Covid inquiry.
What the pandemic did appear to change is that it caused people to be supported at home rather than in residential care homes. Local demand for services grew while low paid domiciliary care workers told us they were forced to make dangerous decisions about whether to work while unwell because of a lack of sick pay and were expected to visit people’s homes with inadequate PPE.
We were told our figures reflected people’s personal choice to die at home rather than in hospital or a hospice, likely in response to nationwide pleas to “protect the NHS” and for fear of contracting Covid. But for the tens of thousands of people who depend on personal assistance to have any quality of life, there is very little choice.
That is why we weren’t derailed by the roadblocks we’ve encountered this year trying to confirm which organisations hold what data, and the guidelines surrounding when a care provider has to notify the CQC, or its commissioning council, of a client’s death. Their lack of choice is why we weren’t deterred from pursuing this investigation, despite the complex data caveats, or the many reminders to be cautious of our data because it was incomplete. Bureau Local and our publishing partner, the Disability News Service, were motivated by this, not distracted.
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‘Further analysis by public health professionals and academics will be needed’
Since our national article was published on Monday, many regional news reporters and specialist press have followed suit. We’ll continue to share their coverage on our Twitter page.
Lived experience of care at home is beginning to be captured through a digital storytelling tool, made exclusively by interactive theatremakers, Coney, as part of a collaboration between us and the Contemporary Narratives Lab. The tool takes you on a journey, relevant to your relationship with the topic of domiciliary care, allowing you to document your perspective and circumstances. We hope this might form the beginning of a self-sustaining community, and for individuals and the families of those who receive assistance, who believe they’re invisible, to feel acknowledged.
Disabled people’s organisations like Inclusion Scotland have described the situation highlighted by our investigation as a violation of human rights, and have called for clarity on whether causes of death were wrongly recorded or whether other factors were at play, given Covid-19 wasn’t as major a cause of death as expected. Dr Jane Townson, chief executive at the United Kingdom Homecare Association, which represents home care providers, said our work “highlights the lack of publicly available, complete and consistent data sets related to homecare” and has urged the government to consider the data it collects in relation to social care.
Our plan is to push for all of the above and to support others who want to use our findings to achieve this.
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Thanks,
Vicky
Vicky Gayle
Health Inequality Reporter
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