Thousands of vulnerable people in the UK are at risk of being overlooked for vaccination amid confusion over who is to be included in the crucial next wave of the programme, a Guardian analysis has found.
People with a range of conditions said they had been told repeatedly they were at a heightened risk from coronavirus, with some even being told to shield, only to discover they were being left out of the “at risk” group next in line for a jab.
Charities called for clarity on who should be included, urging ministers to err on the side of caution by casting the net as widely as possible to avoid needless Covid deaths.
The UK is poised to meet its target of vaccinating the first four priority groups by Monday. So far the programme has focused on elderly people, care home residents and staff, people who are clinically extremely vulnerable, and frontline health and social care workers. By Friday a total of 14 million had received at least one dose, approaching the target of 15 million.
The next stage involves priority groups five and six – people aged 65 and over, and those aged 16-64 who are at high risk of serious illness or death from Covid-19 because of serious underlying health conditions.
Group six contains an estimated 7.3 million people and is by far the largest of the remaining priority groups. But confusion surrounds the question of who qualifies.
Many who expected to be on the list compiled by the Joint Committee on Vaccination and Immunisation (JCVI) are not, including people with ME, spinal cord injuries, forms of asthma, mild to moderate learning disabilities and rare physical disabilities.
GPs can add people to the priority list at their own discretion, but some appear to be unaware this is the case, prompting fears patients could be left at the mercy of their relationship with their doctor.
The Guardian has heard from some disabled people who have asked their doctor to be given priority status only to be turned down, while one reported that their GP did not know it was possible.
Charities have told the Guardian they are now providing worried clients with a template letter to give to their GP to help them lobby them with evidence about why they warrant a vaccine.
Data released by the ONS on Thursday showed that six out of every 10 people who died with coronavirus in England before 20 November last year had a disability – 30,296 out of 50,888.
Sonya Chowdhury, the chief executive of Action for ME, said she was shocked that the condition – which causes extreme fatigue among other symptoms – had been left out of category 6, and around half of all the emails and phone calls the organisation was receiving were about the vaccine programme. Even mild viruses can cause flare-ups and relapses in people with ME, confining them to their bed for months or even years.
Dan Scorer, the head of policy at the learning disability charity Mencap, said: “People with a learning disability in England are dying from Covid at over six times the rate of the general population – yet shockingly not everyone with a learning disability is being prioritised for the vaccine.
“Currently people with a severe or profound learning disability are in group 6 on the vaccine priority list, and adults with Down’s syndrome are in group 4. Yet people with a mild or moderate learning disability are not being prioritised, unless due to their age or clinical vulnerability. This is despite data showing that 65% of those with a learning disability who died from Covid in the first wave in England had a mild or moderate learning disability.”
Nik Hartley, the chief executive of the Spinal Injuries Association, said people served by his charity should without question be considered a vaccination priority. “Those with tetraplegia and high-level paraplegia will have compromised respiratory function and can have a suppressed immune system, which means they are more likely to require acute care if they contract Covid-19,” he said.
Many people with asthma are confused about when they will get the vaccine and what priority group they fall into. Sarah Woolnough, the chief executive of Asthma UK and the British Lung Foundation, said: “We’ve been urging the government for some months to provide clarity on this as we know it’s a worrying time for lots of people and we now have more information.”
She said there was evidence that people with well-controlled asthma that is not severe are not at higher risk of dying from Covid-19, which means some people will not be included in category six.
“There is an ongoing discussion about who with asthma will be included in category six, and our understanding is that those with asthma that is difficult to control might be included. As it may be hard to accurately identify everyone in this group, the government should err on the side of caution in decision-making and cast its net wide when making decisions about definitions to ensure that people with asthma who are at risk won’t be missed,” she said.
Concern has also been raised among people with rarer conditions. Shona, 23, from St Albans, in the commuter belt north of London, said: “I have a rare condition, Marfan syndrome, that doesn’t seem to fit any neat boxes, and so when I was left off the [vaccine priority] list it wasn’t a total surprise. I’m currently on the waiting list for major open-heart surgery, and every minor illness (like tonsillitis) I’ve had in recent years has left me in hospital, often via ambulance.”
There has been widespread criticism of the shielding scheme during the pandemic. A report this week by the National Audit Office on the shielding programme highlighted significant failings at the start of the pandemic in identifying people who were clinically extremely vulnerable. A dearth of official data meant many people who were at high risk were told not to shield, while others who were not clinically extremely vulnerable were wrongly told to shield.
Prof Wei Shen Lim, the Covid chair for JCVI, said: “The JCVI’s advice on Covid-19 vaccine prioritisation was developed with the aim of preventing as many deaths as possible. As the single greatest risk of death from Covid-19 is older age, prioritisation is primarily based on age. It is estimated that vaccinating everyone in the priority groups would prevent around 99% of deaths from Covid-19.”