Three separate user-led groups have questioned the government’s “unforgivable” failure to ensure that disabled people with underlying health conditions are treated as a priority for the COVID-19 vaccination programme.
They fear that hundreds of thousands, if not millions, of disabled people in England may have been unfairly left out of the group treated as the sixth highest priority for receiving a vaccine.
People in group six are supposed to be those aged 16 to 64 with health conditions that put them at higher risk of serious illness and death from COVID-19.
They should be a higher priority for a vaccine than those without such health conditions who are under the age of 65, while all those seen as clinically extremely vulnerable (CEV) are in a higher priority group.
One open letter to ministers, which is due to be sent to ministers today (Thursday) and has been signed by more than 1,700 disabled people and allies, has been drawn up by the Women’s Equality Party’s (WEP) disability and long term health conditions caucus.
The letter says that millions of disabled people – many of whom have been shielding at home since the start of the pandemic – have been “left in the dark about their vaccination status”.
The #LeftOffTheList campaign letter adds: “Disabled and chronically ill people are being asked to put absolute trust in a system which left many of us locked inside without support in the early stages of the virus, which issued illegal blanket DNRs to learning-disabled people with no clinical justification and which at every stage has forgotten and omitted many of us whose lives are at greatest risk of the virus.
“The extraordinary speed of the UK’s vaccination programme has been fantastic – but we must not allow the system to fail those who need it the most.”
Another statement has already been sent to ministers, this time co-ordinated by Disability Rights UK and signed by 23 disabled people’s organisations and allies, but again raising concerns about disabled people who have been left out of priority group six.
Among other demands, it calls on the government and the NHS to ensure that everyone who has “a learning disability or who is autistic or has a cognitive impairment”, and all working-age disabled people living in residential accommodation or hospitals, are included in priority group six.
It calls on the government and the NHS “to recognise the enormous impact of coronavirus” on disabled people, to “respond more urgently” to protect them from the virus, and to meet their needs in more personalised and accessible ways”.
Meanwhile, the National Survivor User Network (NSUN) has also raised concerns about priority group six, which the joint committee on vaccination and immunisation (JCVI) has decided should include “those with schizophrenia or bipolar disorder, or any mental illness that causes severe functional impairment”.
Akiko Hart, NSUN’s chief executive, warned that the way that this “broad but vague” definition was handled would be “down to individual services proactively reaching out”, local record-keeping, and how “any mental illness that causes severe functional impairment” is defined.
She said: “Our members have been in touch with us about concerns that this may be something of a postcode lottery in practice.”
She welcomed the inclusion in priority group six by JCVI, and work by partners such as Equally Well, which has produced advice on what to expect from the vaccination programme.
But she said NSUN was “deeply concerned that not enough disabled people at higher risk are being included in priority group six, and that not enough is being done to reach disabled people from racialised communities”.
The concerns came as the government attempted to dampen some of the anger about the number of people with learning difficulties who were not being treated as a high priority for the vaccine, despite new figures earlier this month from the Office for National Statistics which highlighted again how they had been particularly disproportionately affected by the virus.
Much of the anger followed high-profile concerns raised by DJ Jo Whiley, who was offered a vaccine before her younger sister, Frances, who has learning difficulties and is now recovering after being admitted to hospital with coronavirus.
The Department of Health and Social Care (DHSC) announced yesterday (Wednesday) that all people on their GP’s learning disability register would be invited for a vaccine as part of priority group six.
This was misunderstood by some commentators, campaigners and journalists to mean the government had extended priority status to all people with learning difficulties, but DHSC stressed that the move was designed to make the process “simpler and faster”, with priority remaining only for those with “severe and profound learning disabilities”.
Public Health England said the move should still mean that “at least 150,000 more people with learning disabilities will now be offered the vaccine more quickly”, although this is only a small proportion of the total number of people with learning difficulties in England.
Freya Papworth, co-chair of the WEP disability caucus, criticised the government’s decision to leave so many disabled people who are vulnerable to the virus out of priority group six.
She said: “With disabled people making up 60 per cent of COVID deaths, and young people with learning disabilities being 30 times more likely to die from COVID than other young adults, the fact that the government has left us off the vaccine list is unforgivable.
“Over 1,700 people have signed our letter in support of the campaign, many of whom shared their stories of shielding for over a year or witnessing their non-disabled carers vaccinated before them.
“We welcome today’s news that all adults on the learning disability register will be offered a jab more quickly in England, but we will not stop fighting for those with mild or moderate learning disabilities to be included, as well as those with chronic conditions such as asthma and ME.”
A DHSC spokesperson said: “This continues to be a hugely challenging period for disabled people, particularly those who are shielding, and we are committed to supporting them, their families and carers through this pandemic and beyond.
“Based on the advice of independent clinical experts at the Joint Committee on Vaccination and Immunisation we are prioritising people most vulnerable from this dreadful disease and this includes those with certain disabilities, including severe and profound learning disabilities, who are currently eligible to receive a vaccine.”
Meanwhile, the government has set out its “roadmap” out of the current lockdown for England.
Included in the document is a prediction that it will no longer be necessary for CEV people to shield beyond the end of March.
It says: “The Government will confirm advice and next steps nearer the time to keep Clinically Extremely Vulnerable people safe.”
But it also says that the government is “considering the long-term support” that CEV people might need, particularly those who cannot be vaccinated or do not receive a significant increase in immunity from the vaccine.
*For sources of information and support during the coronavirus crisis, visit the DNS advice and information page
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