The number of deaths in people receiving care at home has increased nearly four-fold in Stockport, during the pandemic, when compared to pre-pandemic deaths, new research shows.
Data gathered by The Bureau of Investigative Journalism (TBIJ) show deaths amongst the vulnerable groups of older and disabled people receiving home care in England have increased, with an average of a 1.5-fold increase (49%) in deaths across the country during the pandemic, compared to deaths recorded pre-pandemic.
Across the country home care, or domiciliary care, is vital for hundreds of thousands of people, who depend on regular visits from care workers to help them live at home. While the excessive deaths in residential care homes during the pandemic have received widespread attention, little has been paid to those receiving domiciliary care.
Across England, 25,854 people receiving home care died in the last Covid-19 dominated year up to and including March 2021, compared to 17,394 in 2019. Surprisingly, only 8.7% of those deaths had Covid recorded as cause of death. Across Greater Manchester, 678 deaths were recorded in 2019, rising to 1075 between April 2020 and March 2021 (2020-21), a 1.6–fold (59%) increase; of these deaths, just 10% were registered as due to Covid-19. Across the whole population of England there was a 22% rise in deaths in 2020-21.
Stockport recorded 194 deaths in 2020-21 compared to 53 deaths in 2019, a 3.7-fold increase in deaths which was the highest in GM and the fourth largest increase recorded across England. Of those deaths just 7.2% were registered as due to coronavirus.
Stockport council was contacted for comment regarding this increase in recorded home care deaths but had not responded by time of publication.
Fazilet Hadi speaking on behalf of the Disability Rights UK charity, said:
“The dramatic increase in deaths of people receiving domiciliary care during the pandemic appears to be truly shocking. It is very important that the figures are further analysed. Disabled and older people receiving care at home can often be very isolated and forgotten by the world around them. The everyday challenges they face are largely invisible and it is time we put a spotlight on their experiences during the pandemic.”
The figures, obtained by TBIJ from the Care Quality Commission (CQC) using Freedom of Information (FOI) requests, provide the first official statistics documenting the deaths of those receiving home care during the pandemic.
Due to the nature of the regulations governing the recording of deaths of people receiving care at home, these figures may not have captured all those that have died. Care providers are only legally obliged to report deaths to the CQCif a person died as a result of their care or if a care worker was in their home when they died. This means there is no obligation to report deaths when only family or friends are caring for the person concerned.
The CQC says reporting varies greatly between providers and regions. Representing home care providers, the United Kingdom Homecare Association (UKHA) says that one of the reasons behind the large rise in reported deaths in domiciliary care could be due to providers reporting to the CQC “on a precautionary basis” during the pandemic, even though they are not obliged to.
The data on domiciliary care deaths across England shows very wide regional differences, which appear to reflect the complex and fragmented home care system, where care is delivered through almost 19,000 providers, including councils, non-profits, agencies NHS trusts and clinical commissioning groups. In 38 council areas across England domiciliary care deaths more than doubled. Deaths more than tripled in ten local authority areas, which include Stockport and Bury which with a 3.3-fold increase had the second largest rise in deaths across GM.
The UKHA say that official data shows that although excess deaths in domiciliary care were higher during the pandemic, those in hospices decreased, which leads them to believe that more people chose to die at home, with the right care and support in familiar surroundings, than in previous years. The UKHA went on to say the work undertaken in this investigation:
“Highlights the lack of publicly available, complete and consistent data sets related to homecare, as in so many other areas of social care, which would help illustrate trends. High quality data enables policymakers to make decisions about areas where actions would benefit citizens. We believe that it would be extremely helpful for the government to consider the data it collects in relation to social care.”
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The inconsistency of data around home care deaths is exemplified by Bury, where the CQC figures used in this investigation record 33 deaths, with seven due to Covid-19, in 2020-21. But the response to a FOI request submitted by TBIJ directly to Bury council records 179 deaths, with 24 due to Covid-19, over the same period. This is due to councils generally receiving notice of more deaths than the CQC due to data collection differences.
A Bury council spokesperson said the figures indicated “people’s choice in where to spend their latter days”, adding that people who might usually have sought hospital treatment or moved into a care home or hospice may have been restricted from doing so, or been put off by care homes forbidding visitors during lockdown.
Across Britain public satisfaction with care services is very low. With an ageing population increasing demand, and a government failing to pledge resources to social care in the last budget, public dissatisfaction is likely to grow.
Co-founder of the disability collective Sisters of Frida, Eleanor Lisney, likens the social care system in the UK to a postcode lottery, saying. “Each local authority decides differently. Even next door boroughs can have a different assessment and payment system.” Lisney, who needs assistance with cooking and domestic tasks, says her home care arrangements. were also disrupted by the pandemic:
“I had to change one [assistant] because of his own study needs, which required him to use public transport, and furlough another because she had her own family duties.” In an ideal world, she said, care would mean that “we would have the assistance we need — good, intelligent assistance which is regular.”
A report last year by the Fawcett Society showed that 72% of survey responders said that careworkers are underpaid for the work they do and 76% said that they should at least get the living wage of £9.30 per hour. Unison’s senior national officer for social care, Gavin Edwards, said:
“Until the government overhauls the sector and provides the funding it desperately needs, unscrupulous employers will continue to put lives at risk.
“Many domiciliary carers are paid the minimum wage and hold unstable zero-hours contracts. Throughout the pandemic, staff have been going into people’s homes with nowhere near enough PPE, while guidance they’re given shows no understanding of their roles. What’s more, testing has been woefully inadequate.
“Many have been under significant pressure to carry on when they should have been isolating because employers didn’t offer proper sick pay.”
Do you have experience of the home care system? As we continue to explore this area we want to connect with people directly affected – from those receiving assistance, those who work in home care, those caring for relatives and/or involved in advocacy. You can leave us a voice note or send us a message here.
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Dennis Queen says
We are grateful to Manchester’s Meteor and BIJ for managing to get this data. It’s been very hard to find any information about how people who use agency home care have fared during the Covid-19 pandemic. There’s also a complete lack of data cross referenced by people’s ethnicity, gender and incomes so we can understand where the inequalities are happening.
This is devastating news, and utterly tragic for the families across GM affected. Our condolences to everyone affected throughout the region.
We urgently need more information about why the death rates were so high above the national average in Stockport.
Sadly this is not a surprise. We knew at the start of the pandemic in March 2020 that this would be the consequence. National Government dictated the pandemic response, and some of us were designated disposable.
They made it lawful for Social Care agencies to fail to meet known care needs, for the NHS to deny many of us healthcare, based on fragility scores and GPs across the country assigned Do Not Attempt Recusitation to learning disabled and older people .
As a consequence, people weren’t taken to hospital, received unequal healthcare and dangerously low levels of support. Home care agencies slashed many people’s support at the start of the pandemic and some people are still waiting to have their usual support reinstated. Also in home care, workers are not the same every day, putting clients at higher risk. It is obvious this would lead to
Capitalising on social care means these profitable agencies thrive, while disabled people die and meanwhile we’re charged for these essential services.
We need complete review of how social care is provided, with people who use that support in a leading role. We support Reclaiming Our Futures Alliance call for a National Independent Living Service.
At GMCDP we promote independent living in the community via the Individual Budget scheme – employing our own staff and saving on profit margins. Early studies appear to show that such independent living has saved lives during the pandemic due to the increased control over our circumstances.
Greater Manchester Coalition of Disabled People