The government’s decision to put some people with impairments higher on the list of “priority groups” to receive a COVID-19 vaccine has been welcomed as a victory for disabled people’s campaigning.
This week, the government announced that the first vaccine – produced by Pfizer and BioNTech – had been authorised for use in the UK by the Medicines and Healthcare products Regulatory Agency.
Yesterday, ministers announced that the Pfizer/BioNTech vaccine would begin to be rolled out next week across the country, although large-scale vaccination is not expected until the new year.
But they also revealed that those considered clinically extremely vulnerable (CEV) to the virus would now be higher up the list of priority groups than previously suggested.
Furious disabled activists had previously questioned the decision to put disabled people seen as CEV far down the queue for a life-saving vaccine, even though three-fifths of COVID-related deaths have been of disabled people.
Under the previous list of priorities, older people in care homes and care home workers were to be first to be vaccinated; followed by over-80s and other health and social care workers; then the over-75s; followed by those 70 and over; and those 65 and over.
Only then would adults under 65 who were at high risk from the virus receive the vaccine.
But the new list of priorities means that those who are considered CEV will receive the same priority for a vaccine as those aged between 70 and 75.
Those aged 16 to 64 with underlying health conditions that put them at higher risk from the virus will receive the vaccine after those aged 65 and over, and before those aged 60 to 64 with no such health conditions.
But there will currently be no increased priority for any disabled children and teenagers under the age of 16, even if they are considered to be CEV to the virus.
As the priority list stands, those under 16 who are CEV will have to wait until everyone 50 years of age and older has been vaccinated.
There are doubts over whether older care home residents will actually be treated as the highest priority for the Pfizer/BioNTech vaccine, because the need to hold the vaccine at minus 70 degrees celsius means it will – at least initially – have to be distributed from hospitals.
The prime minister, Boris Johnson, told Labour leader Keir Starmer yesterday (Wednesday) that there were “logistical challenges to be overcome to get vulnerable people the access to the vaccine that they need”, after he was asked about “the particular problems of getting the vaccine safely and quickly into care homes”.
Baroness [Jane] Campbell, a crossbench disabled peer, who last week raised concerns about the previous priority list in the House of Lords, said she was “heartened” by the news that those defined as CEV would have a higher priority.
She said: “This change of heart came as a direct result of disabled people’s campaigning efforts to get the government to think again, after it was clearly bought to their attention that thousands of disabled people would most certainly die if they caught COVID-19 and should therefore be vaccinated at a higher priority.
“It’s a shame that disabled people had to mount such an exhausting campaign to get the government and its vaccine expert working groups to fully realise the extent of some disabled people’s extreme risk to the virus.
“Personally, I thought it was clearly evident. As did the British public, many of whom sent me tweets and emails of support for this campaign.”
Other disabled campaigners were more hesitant about welcoming the changes.
David Gillon said the new version of the priority list was an improvement, but only because of how it treats those in the CEV group.
He said: “This draft is better than the first one, but still seems to be allocating priorities on a finger in the wind basis.
“If there are hard numbers behind the low priority given to clinically vulnerable people and the even lower priority for clinically vulnerable under-16s, we’re still not being shown them.”
And he said there were still many anomalies with the priority list, including the failure to prioritise care homes for working-age adults.
Andrew Lee, director of People First (Self Advocacy), was last month among those raising concerns over “absolutely shocking” new figures from Public Health England which showed 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.
He welcomed the news of a vaccine and said: “This is something we’ve been talking about in our COVID-19 Support and Action group for self-advocates.”
But he added: “We are alarmed and angry about the high death rates of people with learning difficulties during the pandemic and the fact that they have not been widely spoken about.”
Lee said he and his colleagues were “encouraged” that adults with Down’s syndrome had been added to the CEV list and would now be at a higher level of priority for the vaccine.
But he added: “It is confusing to many of us, and somewhat discriminatory, to not include people with learning difficulties who do not have Down’s syndrome.”
At present the group of adults at higher risk from the virus – but not in the CEV group – includes those with “severe and profound learning disability”, but not others with learning difficulties.
Simone Aspis, director of Changing Perspectives, said the changes to the vaccine priority list were “not a substantial improvement”.
She said the Public Health England figures showed that people with learning difficulties should be “much higher up the list then they are at the moment”.
Aspis said the reason so many people with learning difficulties were dying from COVID-19 was not just because of underlying health conditions, but because “the support is not there to be tested or understand the lockdown regulations or to do the basic things like washing your hands… or make sense of social distancing”.
The grassroots disabled people’s organisation Bristol Reclaiming Independent Living (BRIL) said the news that care home residents now appeared to have moved down the priority list “due to the governments failing to plan how they would store and deliver the vaccine”, was “another unacceptable blow”.
It said the situation was also “not helped by frequent changes to the guidance”, with the definitions of “clinically vulnerable” and “underlying health conditions” varying and open to interpretation, while this was “particularly worrying for younger people with learning difficulties”.
A BRIL spokesperson said: “Will stressed GPs be forced to decide if someone qualifies as having a ‘severe or profound learning disability’ and can get the vaccination sooner, or that they will have to wait?”
He added: “There are concerns about already pressurised GPs being able to take on the responsibility for making sure people are contacted.
“With the best will in the world, there will be people not known to them who may be in the ‘clinically vulnerable’ groups, including people seeking asylum, travelling communities and homeless people.
“We have been contacted by disabled people raising very specific and important issues about reasonable adjustments under the Equality Act, and making sure that people, families and services are aware of the barriers people may face to being vaccinated.
“It is concerning that this knowledge and lived experience is missing from vaccination plans.”
A note from the editor:
Please consider making a voluntary financial contribution to support the work of DNS and allow it to continue producing independent, carefully-researched news stories that focus on the lives and rights of disabled people and their user-led organisations.
Please do not contribute if you cannot afford to do so, and please note that DNS is not a charity. It is run and owned by disabled journalist John Pring and has been from its launch in April 2009.
Thank you for anything you can do to support the work of DNS…