Official figures have provided the first statistical evidence to suggest that unfair practices or discrimination within the NHS may have caused disabled people to be at a higher risk of death from COVID-19 during the pandemic.
The Office for National Statistics (ONS) has told Disability News Service that the evidence it has produced “warrants further investigation”.
Despite that comment, three key regulators – the Care Quality Commission (CQC), the Equality and Human Rights Commission (EHRC) and the National Institute for Health and Care Excellence (NICE) – have refused to say if they will investigate the ONS concerns.
ONS says its figures show that – after allowing for other factors, such as people’s underlying health conditions, or whether they live in a care home or in a less affluent part of the country – there is still a “smaller but statistically significantly raised risk of death” from COVID-19 for disabled people with higher support needs.
But it also says that it “cannot rule out the possibility of remaining explanatory factors” for the increased risk of death for disabled people, such as “access to and pathways through the healthcare system”.
It also says that an “important part” of the raised risk of dying from COVID-19 faced by disabled people is because they are “disproportionately exposed to a whole range of generally disadvantageous circumstances compared with non-disabled people”.
Throughout the pandemic, disabled people have raised concerns about discriminatory treatment within the health system that they say has put their lives at risk.
This has included discriminatory guidance issued by health bodies on who should receive priority for intensive care treatment during the pandemic; an NHS trust telling people with muscular dystrophy it was keeping their ventilator filters for COVID patients; GPs writing to disabled patients to ask them to agree to sign “do not attempt cardiopulmonary resuscitation” orders; the failure to provide shielding information in an accessible format; and discriminatory NHS England guidance on hospital visitors.
Disabled human rights experts said the new ONS figures were “deeply troubling”, and they called for urgent action to assess whether discrimination – whether direct or indirect – in the health system has played a part in the increased risk of death.
Dr Marie Tidball (pictured, centre), coordinator of Oxford University’s Disability Law and Policy Project, said: “Clearly more urgent work needs to be done to assess what factors caused this risk and whether disabled people’s access to healthcare and public health information have had a role in the elevated unexplained risk for these groups.
“The government can no longer shirk its responsibility to produce an inclusive response and recovery plan to identify any barriers which remain to accessing adequate healthcare and must produce a set of actions to halt the scale of deaths amongst disabled people.”
Mike Smith (pictured, right), former disability commissioner of the Equality and Human Rights Commission and now chief executive of the east London disabled people’s organisation Real, said: “They can do all the explaining away that they like, but this shows disabled people are more likely to die for reasons unrelated to health conditions.
“The unadjusted numbers are so bad in part because disabled people are more likely to be living in circumstances, such as poverty or poor housing, that made them more vulnerable.
“Even after their adjustments, you are still 40 per cent more likely to die if you are a disabled woman. This is simply not acceptable.”
He stressed that the figures did not prove that the extra risk was caused by direct or indirect discrimination in the health system, but he said that this possibility had to be investigated urgently and he was not sure why no-one seemed interested in doing so.
He said: “As someone who is in the ‘moderately vulnerable’ group, I have been extra careful not to catch COVID when cases were rising higher because I did not trust a pressured health system not to make adverse judgements on my quality of life if I was not in a position to speak up and self-advocate.”
He added: “This isn’t just about potential discrimination in health access, this is about our fundamental right to life being upheld under the Human Rights Act and the UN Convention on the Rights of Persons with Disabilities.
“There should be national outrage about this.”
Professor Peter Beresford (pictured, left), co-chair of the disabled people’s and service-user network Shaping Our Lives, said it was “increasingly looking from the official evidence that disabled people have been hit significantly and died disproportionately – but for reasons other than just their health status or objective health risk.
“It is difficult to discount the likelihood of discrimination being a factor in them suffering so badly as a result of both COVID-19 and resultant government policy.
“The fact that the ONS after careful investigation is left concluding that disabled people have faced ‘a statistically significant’ raised risk of death is deeply troubling.
“The figures for people with learning difficulties are particularly worrying.”
The ONS figures are included in a new report published last week, which again confirms that about three-fifths (59 per cent) of COVID-19-related deaths* during the pandemic have been of disabled people.
Most of the mainstream media focused on this figure, which has not changed since the first ONS report on the deaths of disabled people during the pandemic last June.
But the new figures also show a “smaller but statistically significantly raised risk of death” for disabled people with higher support needs, once ONS had taken account of pre-existing health conditions, as well as other factors such as the type of accommodation the person lived in, their poverty level, and the part of the country where they lived.
It is the first time that ONS has tried to adjust its figures on COVID-related deaths of disabled people for the impact of underlying health conditions, and to adjust them separately for factors such as where the person lived.
The figures show that more-disabled** women were 40 per cent more likely to die from COVID-19, and more-disabled men 10 per cent more likely to die from COVID-19, once all these other factors had been accounted for, compared to non-disabled women and men.
But it is also the first time ONS has produced figures showing the heightened risk of death from COVID-19 faced by people with learning difficulties.
For those with a “medically diagnosed learning disability”, both men and women were 70 per cent more likely to die from COVID-19 than people without such an impairment, once all the various factors, including underlying health conditions, had been adjusted for.
ONS also found that, of all the factors that have increased the risk of death for someone with learning difficulties, the most significant was living in a care home or other communal setting.
An EHRC spokesperson refused to say if the ONS comments about the health system were a concern, and if it believed there was a need for an investigation.
But it repeated its previous calls for a review into the disproportionate deaths of disabled people.
The spokesperson said: “These figures are further evidence of the severe impact of coronavirus on disabled people.
“To mitigate risk as we continue to navigate a path out of the pandemic, it is imperative that government undertakes a review into the disproportionate deaths of disabled people, ensuring it takes their views and experiences into account.”
CQC also refused to say if the ONS comments about the health system were a concern, and if it believed there was a need for an investigation.
A third regulator, NICE, also refused to say if the ONS comments about the health system were a concern, and whether it would take any action.
It claimed the issue was “not within NICE’s remit”, even though the regulator says on its website: “NICE’s role is to improve outcomes for people using the NHS and other public health and social care services.”
The Department of Health and Social Care refused to say yesterday if it was concerned by the ONS suggestion that unfair treatment in the health system may have contributed to increased death rates of disabled people, and whether it would take any action to investigate these concerns.
But a DHSC spokesperson said: “It is clear COVID-19 disproportionately impacts certain groups of people, including those with specific health conditions and disabled people, and we will take all necessary steps to ensure that we are best able to protect and support them.”
*The report looks at COVID-related deaths between 24 January and 20 November 2020 of people in England aged between 30 and 100
**ONS examines the impact on those who described themselves as disabled people in the 2011 census, either by saying they were “limited a little” (less-disabled) in their daily lives or “limited a lot” (more-disabled)
***For sources of information and support during the coronavirus crisis, visit the DNS advice and information page
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