Covid inquiry ‘must examine’ pandemic’s steep rise in deaths of disabled people who receive care at home

Four national disabled people’s organisations (DPOs) have called on the Covid public inquiry to examine why there was a huge increase in deaths of disabled people receiving care in their own homes across the UK during the pandemic.

By May 2021, at least 28,000 people receiving domiciliary care had died in their homes in England and Scotland, and from March to June 2020, there was a 225 per cent increase in deaths among those receiving home care across England, a bigger proportional increase in deaths (PDF) than among care home residents in England (208 per cent), the DPOs told the inquiry yesterday (Wednesday).

They said the reasons for this increase were “not yet well understood”, and that this figure may even have under-reported the true number of deaths because of regulations on reporting deaths to the Care Quality Commission.

Last month, they said, the UK Covid-19 Inquiry heard evidence that domiciliary care was “arguably even more misunderstood and overlooked [during the pandemic] than the fragmented and confused situation in care homes”.

The national DPOs Disability Rights UK, Inclusion Scotland, Disability Wales and Disability Action (Northern Ireland) are “core participants” in the inquiry’s sixth module, which is focusing on adult social care.

Their statement to a preliminary hearing for the sixth module was delivered by their barrister, Dr Alice Irving, who said that disabled people had suffered “significant and disproportionate fatalities and other harms during the pandemic” and that, for many disabled people, the impact on their lives was “ongoing”.

She pointed out that the rights of disabled people had been “actively reduced by statute”, after three of the four UK nations allowed local authorities to introduce “easements” to their social care legal duties, allowing them to halt formal social care assessments and reviews, and cut provision, without breaking the law.

Irving said: “As well as the significant practical consequences, the symbolic impact of this decision – what it said about the value placed on disabled people’s lives – cannot be overstated.”

In the end, only eight local authorities – all in England – introduced such easements, but the DPOs said there was “no follow up system to disclose how, or whether, they were used, and no external monitoring of their effect”.

Disabled people who used social care in areas that did not introduce the easements still experienced “significant reductions in their care and support”, often leaving them with “their most basic needs unmet”.

The DPOs said it was vital for the inquiry to discover if reductions in provision of support were “sufficiently proportionate, transparent, or consulted upon”, and whether consultation took place with DPOs, and if the cuts to social care were monitored.

Irving also told the inquiry that disabled people who rely on social care were “at the sharp end” of the misuse of “do not attempt resuscitation” notices, another area being examined in module six.

She said the module provided “an important opportunity to address unanswered questions” about the misuse of the notices, and to examine what work has been done to prevent that happening in any future pandemic.

The sixth module will examine the impact of the pandemic on adult social care in England, Wales, Scotland and Northern Ireland.

Among the key areas it will look at (PDF) are the impact of the pandemic on care homes and care provided in people’s homes; the decisions by governments to free up capacity in hospitals by discharging patients into care homes; the steps taken in care homes to prevent the spread of COVID-19; and the capacity of the care sector to respond to the pandemic.

The inquiry will also use module six to examine the impact of the pandemic on disabled and older people who were receiving social care; and changes to the social care inspection regime during the pandemic.

It will also hear evidence about deaths related to Covid infections, including those of service-users and staff.

The main hearings for module six will take place in London between 30 June and 31 July.

Correction: this article was corrected on 7 February, as the previous version wrongly stated that the figures on pandemic deaths related to England and Wales, whereas they actually relate to England, and to England and Scotland. The DPOs’ concerns refer to the whole of the UK, and not just to England and Wales.

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