Call for urgent action as investigation finds home care deaths rose by half in pandemic

Disabled activists have called for an urgent investigation after new figures showed that deaths of disabled and older people receiving support at home from care agencies rose by nearly 50 per cent during the first 12 months of the pandemic.

In nearly 40 council areas across England, the number of deaths more than doubled between April 2020 and March 2021, compared to the 2019 calendar year, although there were significant variations across England.

In Liverpool, deaths rose from 100 in 2019 to 358 during the pandemic year, in Haringey in north London they increased from 32 to 170, and in Stockport from 53 to 194, although in a small number of areas they did fall, including Bradford and Derby.

Although the increase is likely to be linked to the pandemic, only about nine per cent of the deaths in England were reported as COVID-related.

In Scotland, the rise in deaths reported by home care agencies was even higher, at nearly 70 per cent, although there was no detailed breakdown across local authorities because of the way the figures are collected.

The increase in deaths of 49 per cent in England and 69 per cent in Scotland compares with an increase of 22 per cent in the wider population in England during the pandemic.

In total, between April 2020 and March 2021, more than 25,000 people died in England while receiving home care (compared with about 17,000 in 2019), and almost 3,000 in Scotland.

The figures come from an investigation by The Bureau of Investigative Journalism (TBIJ), which obtained data from the Care Quality Commission and Scotland’s Care Inspectorate through freedom of information requests. Disability News Service collaborated with TBIJ on its investigation.

There are no figures for Wales, because care providers are not required to notify Care Inspectorate Wales of deaths.

The figures obtained by TBIJ show high levels of excess deaths continuing through the summer of 2020 and the second wave of COVID-19 and through to March 2021.

Although previous official figures have shown a steep rise in the number of deaths in care homes during the pandemic, these are the first to show how the domiciliary care sector has been affected, although they do not include deaths of disabled people who employed their own personal assistants to provide support, for example through direct payments.

Responding to the new figures, the Department of Health and Social Care (DHSC) said it was aware of the rise in home care deaths during the pandemic and was working with local authorities to better understand the data.

It also said it was considering how to improve the inconsistent data on the causes of deaths in home care.

Anne Novis (pictured, above right), a disabled campaigner, user of social care and a trustee and former chair of Inclusion London – although not speaking on its behalf – said: “During last year, and still continuing, social and health care has been reduced, decreasing our ability to exist, on top of the impact of prolonged austerity cuts.

“I personally know how this has impacted me with prolonged and ongoing delays in health treatments, reduction in my care package and lack of accessible mental health support.

“The impact of COVID on us is extreme. Just as with care homes, we are not thought about till its too late.

“The huge increase in unexplained deaths, for those of us receiving social care from agencies, is extremely worrying.

“It needs a proportionate response by government urgently.

“An inquiry is needed but our health and social care needs prioritising now, not while we wait for the years an inquiry can take.

“The CQC needs to be urgently reviewing all the deaths of agency clients, identifying which agencies seem to be involved the most and identifying why.”

Novis said she has previously used care agencies, as did her mother, but the standard of care was so poor that she switched years ago to using direct payments, which allow her to employ her own care workers.

She said: “These statistics reinforced my belief that standards are still poor, even if the individual carers are good.

“The system they work within, a profit-making system, makes them have to rush their care work, sadly.”

Ellen Clifford (pictured, above centre), a member of the national steering group of Disabled People Against Cuts, said too few questions had been asked about the impact of the pandemic on non-residential social care users during the pandemic.

She said: “Experiences from within disabled people’s communities during the pandemic have indicated all along that disproportionate COVID-related fatalities are only half of the story.

“There are many other ways that disabled people have been seriously adversely impacted on a disproportionate scale, with potentially fatal consequences.

“ONS figures from September 2020 show that 51 per cent of disabled people had had treatment for non-COVID conditions reduced, cancelled or postponed compared to 27 per cent of non-disabled people.”

She said disabled people had also been “de-prioritised for access to critical care” under NHS treatment rationing guidelines that discriminated against people with underlying health conditions and impairments.

She pointed to a study by critical care specialists that found that, during the first wave of the pandemic, people who scored highly on a so-called “clinical frailty score” were denied access to critical care even if intensive care beds were available.

Clifford added: “In order to understand exactly what these figures are telling us and where there are lessons to be learned, we need answers.

“At the moment, it is being left to journalists and campaigners to search for truths the government would rather conceal.

“A full independent public inquiry into the government’s handling of the pandemic is well over-due.

“If and when we get one*, we will have to ensure that the full range of impacts in all areas of disabled people’s lives – and deaths – are given the attention they deserve.”

Professor Peter Beresford (pictured, above left), co-chair of the disabled people’s and service-user network Shaping Our Lives, said the UK government had “often failed to look at the broader consequences of their actions in response to the pandemic”.

This meant that “initial delays resulted in far greater levels of infection and death tolls than should have been the case in an advanced western society”, while “arbitrarily exporting older people from NHS beds to the care system pushed the death rate in care homes sky high”.

Of the new figures, he said: “While we need to explore these trends with further care, we have to ask if the policy and practice of this government, which has been said to give it a COVID ‘bounce’ in May’s elections, wouldn’t have actually served as more like a death blow to it, if more accurately reported and highlighted.”

Whatever the “final judgement”, he said, it would be too late for the thousands of additional older and disabled people receiving home care who appear to have died as a result.

Svetlana Kotova, director of campaigns and justice at Inclusion London, said she feared that reductions in health and social care provision during the pandemic could be an explanation for some of the increase in deaths among those receiving home care.

She supported the calls for urgent action to investigate the causes of the excess deaths, and to prioritise disabled people’s health and social care needs.

She said access to health services was often almost “non-existent” during the lockdowns for people receiving care at home, and worse than for those in care homes.

She said: “From what our surveys show, people in the community were left with nothing.

“Appointments were cancelled, there was remote meddling with doses of medication, and there were difficulties getting through to GPs.

“So many people told us about this and this must have had its consequences.”

Fazilet Hadi, head of policy for Disability Rights UK, 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.”

She said the figures appeared to show that most deaths were not due to COVID and so it was “important that we clarify whether causes of death were wrongly recorded or whether other factors were at play.

“We know that many people receiving social care experienced cuts to their care and the link between these reductions and the higher rate of deaths also needs exploring.”

By law, home care agencies only have to report deaths to CQC if a service-user died as a result of their care, or how it was provided, or if a care worker was in their home at the time they died.

The United Kingdom Homecare Association (UKHA), which represents home care providers, suggested one of the reasons for the steep rise in reported deaths could be that providers were reporting more deaths to the CQC “on a precautionary basis” during the pandemic, even when they were not strictly required to do so.

It said it was also possible that the government’s “Protect the NHS” message may have caused people to avoid hospital treatment, and to stay at home instead.

A UKHA spokesperson said: “The work undertaken by TBIJ 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.

“We believe that it would be extremely helpful for the government to consider the data it collects in relation to social care.”

A CQC spokesperson said: “Providers of domiciliary care services are not required to notify CQC of all deaths of people who use their services and the data should therefore not be taken to represent a full and accurate representation of the number of people who use domiciliary care services who have died.”

A DHSC spokesperson said: “Every death from COVID-19 is a tragedy and we have ensured good quality home care remained a priority throughout the pandemic with an approach informed by the latest scientific advice.

“The adult care sector has received priority for vaccines preventing more than 10,000 deaths in older adults and we have provided billions of pounds in funding including for [personal protective equipment] and testing.

“Vaccines are the best way to keep people safe and over 35 million people in the UK have now been vaccinated with at least one dose and a third of adults have received a second dose meaning they have maximum protection from the virus.”

TBIJ is keen to hear from those with experience of the home care system, including disabled and older people receiving assistance, those who work in home care, and those caring for relatives and/or involved in advocacy. Use this link to leave a voice note or send a message

*The prime minister announced yesterday (Wednesday) that an independent public inquiry into the response to the pandemic would begin next spring

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