Inquiry hears how lack of accountability for disabled people’s Covid deaths caused lasting harm

The lack of accountability for the tens of thousands of Covid-related deaths of disabled people receiving care in their own homes and residential settings has caused lasting harm, the UK Covid inquiry has been told.

In their opening written submission to the 10^th and final module of the UK Covid-19 Inquiry – on the pandemic’s impact on society – three national disabled people’s organisations (DPOs) said many deaths remained un-investigated, particularly in England and Wales.

Despite tens of thousands of Covid-related deaths of disabled people who had been reliant on care or health workers, the number of all deaths reported to coroners in England and Wales in 2020 was the lowest since 1995, partly because of easements to requirements around the registration of deaths and reporting by medical practitioners.

Among the matters left under-investigated was whether the use of inappropriate “do not attempt cardiopulmonary resuscitation” notices and “clinical frailty score” assessments led to preventable deaths.

In Scotland, there was an increase in reported deaths because of the work of the Covid-19 Deaths Investigation Team, although this was limited to deaths linked to employment and residential care.

The three national DPOs – Disability Rights UK, Inclusion Scotland and Disability Action Northern Ireland – told the inquiry in their opening oral submission last week that disabled people were “far more likely to die from Covid-19 than non-disabled people”, and people with Down’s syndrome could have been more than 30 times more likely to die from the virus.

But they said there was “never a point in the pandemic when government and public authorities properly scrutinised the detail of these deaths in terms of their relevant impairments and circumstances, let alone examine their preventability”.

They told the inquiry, through their barrister, Kate Beattie: “Rather than continuing or even enhancing the reporting and investigation of deaths of disabled people, at a moment when people were dying in dependent situations outside hospitals in numbers unknown in living memory, the formal reporting of deaths reached a historic low.

“The various health and care monitoring bodies did not necessarily inspect and did not prioritise site visits, and if deaths were reported, the holding of inquests was minimised without the anxious scrutiny which was warranted by these unparalleled circumstances.

“The outcome, as recounted by the Covid Bereaved Families for Justice and others, was a failure of accountability to disabled people who were bereaved, to non-disabled people who were grieving the deaths of their disabled loved ones, and to disabled people more generally.”

She added: “The legacy is a terrible human cost for those denied the opportunity to establish truth so that a person can properly begin to grieve it.”

The DPOs also told the inquiry that the government needed to “acknowledge the importance of disabled people’s rights and the failure to do enough to protect those rights” by incorporating the UN Convention on the Rights of Persons with Disabilities into UK law and introducing new laws that would “embed accessibility across all aspects of life”.

And they stressed the importance of “effective and properly funded co-production” of policy with disabled people, intersectional organisations and DPOs, as well as “far greater understanding of the social model and of intersectional experiences that mean that certain societal groups are far more marginalised than others”.

Giving oral evidence to the inquiry this week, Dr Pauline Nolan, head of participation and policy at Inclusion Scotland, said that a survey by her organisation in April 2020 showed that 30 per cent of respondents said their usual social care support had been “either stopped completely or reduced, sometimes overnight or without any warning” in the early months of the pandemic.

And, she said, disabled people had been “really anxious about not getting social care support recovered after the pandemic because they were seen to manage”.

She said that at least 28,000 recipients of domiciliary care in England and Scotland had died by May 2021.

Nolan said after the evidence session: “The evidence shows the impact on lives, health and mental health should not have been inevitable.

“Much data about inequalities in health, access to information, social care support and digital barriers were known already.

“Lessons from co-design learned prior to the pandemic were valuable. And yet in the height of the crisis none of this was used.

“Lessons also need to be learned for any future public health crisis.

“For example, much more reliable data on the needs of disabled people with more than one characteristic is needed, so that they aren’t failed through flawed actions taken in response in the future and those still at risk from Covid-19 can have their needs met.”

Meanwhile, disabled academics Professor Nick Watson and Professor Tom Shakespeare have concluded – in a report commissioned by the inquiry for its tenth module – that the pandemic had “combined with, and magnified, the underlying systemic inequalities and vulnerabilities” disabled people already experienced.

Their report, on the impact of the pandemic on disabled, clinically vulnerable and clinically extremely vulnerable people across the UK, stressed the vital role played by DPOs and other voluntary sector organisations because of the way they “adopted imaginative and novel roles and stepped in where the state and local authorities failed to deliver”.

But they said they could have been even more effective “if they had not just been used to fill the gaps left by the statutory services” but had also been asked to contribute to the design and delivery of services.

Among their recommendations, they said that social care needed to be seen as “an equal partner to health care”, while the importance of domiciliary care needed to be recognised.

And they said there should be research into the intersection between disability and other protected characteristics during the pandemic.

Giving oral evidence to the inquiry on Thursday (19 February), Shakespeare, professor of disability research at the London School of Hygiene and Tropical Medicine, said the pandemic had seen “a focus on health but a neglect of the care sector”.

He told the inquiry: “And when it was thought of, it was only thought of as people in care homes, older people in care homes, and not well thought of then.”

Watson, who until his retirement last month was professor of disability research at the University of Glasgow and director of the university’s Centre for Disability Research, told the inquiry of the impact of isolation on many disabled people during the pandemic.

He said he had spoken to a young woman with learning difficulties for their research, who had become so anxious during the pandemic that she was “washing herself every day with bleach and ended up in hospital with scars from the bleach” due to “high anxiety building up and nobody to talk to”.

Watson and Shakespeare told the inquiry how, in the early months of the pandemic, it was DPOs such as Glasgow Disability Alliance, Inclusion Scotland, Inclusion London and Equal Lives that brought the treatment of disabled people to the public’s attention.

Watson said DPOs had changed the way they worked and run services such as providing access to personal protective equipment, challenging disabled people’s digital exclusion, and setting up online social events.

He said it was these DPOs that “held things together during this pandemic”.