People with disabilities in England should be given priority for vaccination against Covid-19, according to leading charities, after official data showed that they accounted for 60 per cent of all deaths from the disease last year.
Describing the data as “both illuminating and horrifying”, James Taylor, executive director of strategy for Scope, which campaigns for disability equality, said: “What they show is that there is an urgent need for the government to prioritise disabled people now.”
This week, health officials announced that they were moving an extra 820,000 people up the vaccination priority list, including some with severe or profound learning disabilities who will be elevated into the sixth of the government’s top nine groups for receiving the jab.
But campaigners said this did not include those with mild or moderate learning disabilities, who are at equal risk of dying from the disease.
Jackie O’Sullivan, director of communication, advocacy and activism at Mencap, said: “We’d like everyone to be prioritised in at least category six. The data [on deaths] doesn’t make a distinction in the severity of your learning disability so I don’t see why the vaccination programme should.”
According to Office for National Statistics data published last week, 30,296 of the 50,888 coronavirus deaths in England between January and November were people with a disability.
Nowhere is the disparity in coronavirus outcomes more glaring than for people with a learning disability. ONS data show that women with that condition normally die at three times the rate of non-disabled women — but they have died from Covid at four times the rate. For men, rates are generally 2.8 times higher but in the pandemic they have been 3.5 times higher.
Analysis of data by the Financial Times shows that, for those with a physical or mental disability, living in the closed confines of a care home is the single biggest risk factor for death from the virus. Other significant factors are low socio-economic status and pre-existing health conditions. Strikingly, when people who fall into any of these three categories are excluded, the gap in outcomes narrows dramatically, especially for men.
Taylor said that for some disabled people, the pandemic had meant “a year of agony” cut off from much human contact and in some cases facing worsening health because of cancelled medical appointments “so there is a whole multitude of things that are happening which are causing these figures to be higher”.
One of the most high-profile scandals of the early months of the pandemic was the high rate of deaths of older people in care homes, some of whom unwittingly spread the disease after being discharged from hospital without being tested.
Matt Hancock, health secretary, later said he had thrown a “protective ring” around the sector.
However, Valerie Michie, chief executive of Choice Care, which looks after 600 people in small community residential homes or supported living arrangements, pointed to the copious guidance and financial help that had been aimed at care homes for older people, while homes for working-age adults had been overlooked.
Michie said: “The headlines in the news have been saying ‘all people in care homes have been vaccinated, we have met the target’ but in fact it’s all people in elderly care homes.
“We have hugely upset families and parents who have had their vaccinations and they’re saying to us ‘this is not right, my son or daughter is way more vulnerable than me’.”
Harry Roche, aged 32, who has a learning disability and is an ambassador for Mencap, is enduring a long and frustrating wait for the vaccine. “It’s not fair. People with a learning disability need to be prioritised for the vaccine because we are at high risk and the UK government doesn’t seem to think that,” he said.
It was a view echoed by Charles Bloch, who is registered blind and lives in Coventry with his guide dog Carlo. He said that his diminished spatial awareness made it difficult for him to socially distance when out shopping. Yet the 26-year-old said he feared that, like others in his age group, he would not be vaccinated until the autumn.
“I don’t feel disabled people have been considered or consulted in any of the [official] decisions,” he said.
Campaigners are scenting glimmers of hope. A letter sent last weekend from senior NHS executives to staff involved in the vaccination programme, seen by the FT, said that vaccination plans must be drawn up for care homes whose residents have a learning disability or mental health problems, and suggested that family doctors should exercise some discretion about who they included in the priority group.
Campaigners and carers also hope that the poor outcomes among disabled people during the pandemic will spark wider debate and action over steep disparities in health outcomes between disabled and non-disabled people.
Men with a learning disability die 22 years earlier, and women 28 years earlier, than counterparts without the condition. O’Sullivan said that troubling attitudes had emerged early in the pandemic, when people with a learning disability were told that they might not receive life-saving treatment if they caught Covid.
The original guidance from the National Institute for Health and Care Excellence in March — which conflated the need for support with frailty — was quickly changed but the charity was still dealing with the consequences of “do not resuscitate” orders being placed on people’s records without their consent, O’Sullivan said.
Despite the NHS having made clear that this was not to happen, some orders were still lying there “like unexploded landmines”, O’Sullivan added. “You don’t know whether you’ve got one until you need the treatment.”
In a statement, the UK’s health department said: “[Covid] has disproportionately impacted certain communities and groups of people, including individuals who have health conditions associated with known Covid risks, those in care home settings and disabled people.
“We continue to adopt all necessary measures to protect these people through our social care policies, vaccination programme and the shielding arrangements in place for the clinically extremely vulnerable,” it added.
Even while campaigners navigate the current complexities, Richard Kramer, chief executive of Sense, hopes that a lasting legacy may come from the stark impact of Covid on the disabled community.
Pointing to a £3.6bn gap between resources and demand for social care, he said: “Disabled people have fallen through the cracks in government and we need to tackle the inequalities they faced pre-Covid if we want to improve their lives post-Covid.”