Shame of Covid-19s forgotten victims

Published by The i paper (11th May, 2020)

Britain has one of the highest coronavirus death rates in the world, there is carnage in our care homes and a collapsing economy. But at least we have a new slogan to fight this dastardly pandemic. Sure, it is confusing and muddled at a time when there is urgent need for clarity, but that only reflects the Government’s stance. For it is our tragic misfortune we find ourselves in a public health catastrophe led by a prime minister who won power through harnessing populism, then failed to switch from campaigning to governing mode once in office.

Slogans are no substitute for policy. If the Government itself had been more alert when this new virus started sweeping the planet, fewer people might have died. Instead we saw failures on approach, testing and equipment. Ministers from a party sensitive to charges of not caring about the NHS focused on ensuring hospitals could cope after seeing the struggles in Italy. They succeeded with the help of dedicated staff – yet only at expense of the social care sector.

Social care has long been seen as a second class public service, cash-starved and ignored despite its importance for millions of citizens. This has been exposed with hideous clarity by this crisis. Belgium tested all staff and residents in care homes. But the official British advice in early March still said ‘it remains very unlikely that people receiving care in a care home or the community will become infected”.

Then thousands of old people were pushed from hospitals to clear space – almost certainly taking the disease into care homes and communities. The Care Quality Commission (CQC) is investigating whether some hospitals even knew patients were infected.

So was it callousness, eugenics or stupidity that sent these patients into buildings crammed with people most at risk from this virus? Regardless, it was unforgiveable. Yet even now, even when there is a belated focus on social care through the prism of care homes, one group remains frozen from debate: those needing support due to disabilities.

I am bored pointing out that working age adults comprise about one in four care home residents and demand from this group is rising fastest. And then there are all those stressed families relying on domiciliary care, trying to navigate staff shortages and muddled advice while often unable to isolate. At the very bottom of the pile, airbrushed from public discussion, lies our most excluded group: citizens with autism and learning disabilities.

Britain entered this crisis with hundreds of them forcibly detained in mental health institutions, many drugged into semi-consciousness and some locked in solitary confinement. This is morally wrong and a total denial of their human rights. Health and political leaders accepted most did not have psychiatric issues and should be supported in the community. How many of them have now been felled by this cruel virus?

We do not know the answer. For the deaths of such people do not seem to count in our society.

We know that deaths of people held under repressive mental health laws have more than doubled. We know there were attempts to impose “Do Not Resuscitate” orders. And we know this slice of our citizenry will be among those most at risk whether in psychiatric hellholes, crowded care homes or because of health conditions. People with autism may struggle if routines are disrupted, people with Down’s Syndrome may have respiratory issues, people with epilepsy (like my daughter) can have potentially fatal seizures triggered by fevers.

We have heard the usual hollow platitudes during those increasingly-absurd daily briefings. On Friday NHS England’s national medical director Stephen Powis blathered on about people with autism, learning disabilities and mental health problems being ‘key’ to NHS focus. Never mind the state abuse of people with autism; thousands of needless deaths of people with learning disabilities due to incompetence; or the massive surge in detention of mental health patients due to a lack of community facilities.

Then he pledged they would publish data on learning disabilities, autism and mental health patients who have died in acute hospitals. Hurrah! Even if it is 10 weeks since the declaration of a global public emergency and they already disclose fatalities by age, ethnicity, gender and geography.

But then I checked the details. NHS sources told me they will publish verified data on deaths with confirmed Covid-19 in their settings. But they were still working out details so could not, for instance, say if this would include NHS-funded patients in grim private psychiatric hospitals. Clearly they have only just begun focusing on this issue. Bottom of priorities, again.

This also excludes people dying in other places. Sir David Spiegelhalter, the brilliant statistics professor, said yesterday that Britain has about 3,000 unexplained excess deaths a week due to a combination of under-diagnosis and “collateral damage” amid the NHS disruption. Care home fatalities are triple normal rates, with only half labelled coronavirus. Many more people are dying outside hospitals.

Public Health England says it has been given access to mortality data on people with learning disabilities but cannot say when it will be published since it is just “the first step in analysing the impact of Covid-19”. The CQC says it has also started looking at how to extract and analyse data. Obviously no rush there, either.

Clearly the government and health authorities have swept aside this issue until now. Suddenly they have been prodded into partial action by some activists threatening judicial review and a few supportive politicians. But why were people with autism and learning disabilities forgotten in this crisis – just as they are denied education, frozen from workplaces, starved of care support and imprisoned for the ‘crime’ of being different? The answer is simple, but chilling: these citizens are so excluded in our society they do not even get respect in death.

Categorised in: Covid19, Disability, Health, home page, Public policy, Social care