For months, mental health charities and Labour politicians have been telling the government truths that were so self-evident to anyone with experience of mental health they shouldn’t need telling. People with learning disabilities and autism faced exceptional risks to health and life from Covid-19. They were likely to die because now, as always, they are the last patients the NHS thinks about when the screws tighten.
And so it has proved. I could quote dozens of warnings, but let one stand for them all. On 5 May, Labour’s shadow secretary for social care, Liz Kendall, urged Department of Health and Social Care minister Helen Whately to publish data on deaths reported to the Learning Disabilities Mortality Review Programme. The idea that people with learning disabilities and autism were not dying at a disproportionate rate made no sense whatsoever.
Kendall understood that in modern bureaucracies what isn’t counted doesn’t count. Unless the Department of Health and NHS were seeking and publishing information on excess deaths, you could place a bet you were sure to win that they were not trying over-eagerly to prevent them.
NHS England didn’t appear to be counting and wasn’t interested. The Health Service Journal reported in May that data on suspected and confirmed deaths of those with learning disabilities and autism inside and outside of hospital from covid-19 would not be published until next year. The NHS wasn’t going to rush because learning disabilities were not a risk factor worth bothering with. The afflicted were doing just fine, or no worse than the rest of us.
On 15 May, NHS England adopted a reassuring tone. It said 451 patients who have died in hospital from coronavirus since 24 March had a learning disability or autism. At two per cent of all covid-19 deaths this was roughly proportionate to their number in the wider population.
As I said at the time in The Spectator, this felt all wrong. Put yourself in the place of someone who lacks the mental ability to contact a GP, phone for help, understand the hand washing and social distancing rules, or seek information on the internet. Would you expect their chances of surviving the pandemic to be the same as yours? Or imagine someone who is severely autistic, locked down in a ‘care’ home 23 hours a day and pumped full of drugs, and consider the probability of suicide, over eating and self-harm.
The NHS has got away with it. There has been next to no coverage of deaths among the disabled. Politicians and the media have criticised this measurelessly incompetent government for allowing the virus to sweep through care homes. Official inquiries have examined the disproportionate death tolls among ethnic minorities. But on people with autism and learning disabilities, nothing. Or so little it might as well have been nothing.
Until yesterday, that is, when months late – and long after the time when speaking out might have saved lives – NHS England announced that it had finally accepted what the Care Quality Commission had been telling it since June. Far from being nothing to worry about, the probable death rates of people with learning disabilities and autism had doubled during the pandemic. NHS England along with a quango with the idiotic name of NHS Improvement has now ordered ‘urgent’ reviews.
When the Health Service Journal asked officials to explain why it had previously suggested the death rate was not worth worrying about and whether it would publish the inquiry’s findings, its reporters received no reply.
NHS England told me the suggestion that there would be an ‘urgent’ review was wrong. It came from a badly drafted job advert. The NHS would review the deaths in the normal way. Its statistics of deaths in hospitals were accurate, and it was a mistake to jump from them to the figures showing a doubling of deaths from people with learning difficulties inside hospitals and out. There had been no statistical sleight of hand or cover up on its part. That’s as may be. But the fact remains that the death rate has doubled, among sick people whose care is the NHS’s responsibility, and these deaths were foretold.
As I said in May, people with autism and learning disabilities in England are likely to die young. So great is the health inequality that the NHS estimated before the pandemic that they were four times as likely to die as contemporaries of the same age and sex. They have a higher rate of respiratory conditions and higher rates of obesity – both risk factors for Covid-19. The original claim from the NHS that ‘Covid-19 deaths in hospitals of people with a learning disability is broadly in line with the rest of the population’ made no sense.
You will notice that throughout this piece I have used the clunky formulation ‘people with learning disabilities and autism’. Actually, if you obey the dictates of contemporary healthspeak it is not clunky enough. One should say ‘people with learning disabilities and/or autism’. Everyone from the government to NHS Trusts to media editors now insists on bans on phrases such as ‘the mentally handicapped’. You should not reduce every aspect of the victim’s personality to their condition. Not that you should say ‘victim’ either. As the Time for a Change campaign group said, ‘victim’, along with ‘the afflicted’, ‘a sufferer’, are impermissible too. ‘Many people with mental health problems live full lives and many also recover’. So they do and so they may, but many do not, and now they are dying at an inordinate speed.
The naïve might think that language policing is a sign of a society that cares so much about ‘people with learning disabilities and autism’ it can devote precious time to worrying about the implications of every word used to describe them.
NHS negligence should squash that comforting thought. As so often, making language purer is a diversion from making lives better. Or in the case of ‘people with learning disabilities and/or autism’ allowing them to live at all. Soft words blind us to what is in front of our eyes.
There is a staggering story out there, a secret in plain view: the NHS figures weren’t wrong. They were wildly wrong. Twice as many members of a vulnerable and victimised group died as the NHS estimated. And the NHS can be sure that its failures will receive next to no public attention.
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