‘Shocking’ figures on deaths of people with learning difficulties ‘show need for vaccine action’

Disabled activists have spoken out over “absolutely shocking” new figures which show that younger people with learning difficulties in England were more than 30 times more likely to die from coronavirus than non-disabled people of the same age.

Two leading campaigners with learning difficulties said this week that the figures provide further evidence to show why many younger disabled people should be higher on the list of priorities for a coronavirus vaccine when one becomes available.

Last week, Disability News Service reported how disabled activists had questioned the “sickening” and “utterly bizarre” decision to put younger disabled people seen as extremely vulnerable to coronavirus far down the queue for a life-saving vaccine, when it eventually becomes available.

The report from Public Health England (PHE), which looked at figures from the early months of the pandemic – between 21 March and 5 June – said the death rate for people with learning difficulties was 4.1 times higher than the general population, after adjusting for factors such as age and sex.

But because the databases used for the research do not register all deaths of people with learning difficulties, PHE said the true rate may have been as high as 6.3 times higher than the general population, or 692 deaths per 100,000.

And the death rate for people aged 18 to 34 with learning difficulties was 30 times higher than non-disabled people in the same age group.

Disabled activists with learning difficulties this week spoke out about the figures.

Simone Aspis (pictured, left), director of Changing Perspectives, said the figures were “absolutely shocking”, even when accepting that some people with learning difficulties would be more at risk from the virus because of underlying health conditions.

She said the figures were “not surprising given that people with learning difficulties face the biggest amount of prejudice as regards ‘do not resuscitate [orders]’, having care removed, having support removed, the closure of services.

“People with learning difficulties are bottom of the queue for vaccination, for testing, for healthcare… for education support.

“Is there not a clear message there that [there is] a social eugenics programme going on here?”

She added: “It is pretty dire out there, with people not getting the support they need, the testing [for COVID] is inaccessible and people are not being able to access the testing.”

One woman with learning difficulties has described to a support group how COVID-19 testing was inaccessible to her, but at the same time her support had been withdrawn because of the pandemic, said Aspis.

She said the figures showed that younger people with learning difficulties should be one of the priority groups for a COVID-19 vaccine when it is available.

But Aspis said she was pleased that the PHE information had been released in an easy read format so more people with learning difficulties could understand it.

Andrew Lee (pictured, right), director of People First (Self Advocacy), said he was “alarmed and appalled” by the figures.

He said: “I’m concerned how little attention our politicians have given to this health inequality.”

He said he believed that some deaths could have been avoided.

He said People First was also concerned that people with learning difficulties “will be at the bottom of the list for access to vaccination”.

Lee said: “The figures published on 12 November are a shocking indication of the health inequalities we face.

“I hope that we can all work together to make sure that the rates of death for people with learning difficulties are significantly reduced.”

Part of the reason for the higher death rates, according to PHE, is that people with learning difficulties are more likely to have underlying conditions such as obesity and diabetes, or to be more vulnerable to respiratory infections.

PHE also said they may have found it more difficult to recognise symptoms of COVID-19, or to follow government advice on testing, self-isolation, social distancing and infection prevention and control.

Professor Irene Tuffrey-Wijne, professor of palliative care for people with learning difficulties at Kingston University and St George’s, University of London, said the “worrying” report showed the need for “urgent” action.

She said she believed the figures showed that more support should have been provided to help people with learning difficulties understand and cope with lockdown restrictions, and to ensure they had access to regular testing.

She suggested that shortages of personal protective equipment in the early stages of the pandemic was another cause of the higher death rate.

Professor Tuffrey-Wijne also called for people with learning difficulties to be prioritised when rolling out a COVID-19 vaccine.

And she questioned why the report was only released in mid-November (12 November), when some of the figures had been available earlier in the year.

*For sources of information and support during the coronavirus crisis, visit the DNS advice and information page

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