Clinically extremely vulnerable (CEV) people with Covid are struggling to get timely access to treatments such as antiviral drugs, charities, patients and doctors have warned amid a summer wave of the virus.
People with certain health conditions or who meet other specific criteria are eligible for medications that can help the body fight the virus that causes Covid. They include those 85 years or older or who have Down’s syndrome, an organ transplant, a weakened immune system, lung cancer or sickle cell disease.
Before June 2023, CEV patients in England who tested positive for Covid were contacted directly by their local Covid Medicines Delivery Unit (CMDU). But responsibility for prescribing drugs was devolved to the 42 NHS integrated care boards (ICBs) in England, with experts warning this has led to a postcode lottery when it comes to accessing treatment.
Concerns have been raised after patients reported needing to make repeated calls to secure access to drugs, often while seriously ill, despite the requirement that medications must be given within five days of symptoms starting. The reports have also caused concern as patients have reported having to argue for their eligibility, even though they meet current guidelines.
“The British Liver Trust has received calls from people with liver conditions who have experienced difficulty in accessing antiviral treatment, expressing frustration and anxiety,” said Vanessa Hebditch, the director of communications and policy at the charity.
“People with advanced liver disease are extremely vulnerable if they contract Covid, and we must ensure that anyone who is vulnerable – including those who are immunosuppressed or who have had a transplant – are able to get treatment as quickly as possible. This is particularly important in light of information about new strains of Covid.”
Fiona Loud, the policy director at Kidney Care UK, said: “We are still seeing people in the kidney community finding it difficult to access lateral flow tests and Covid treatments due to the lack of clarity as to how CEV people should do this. There has been no recent communication from the government, which has led to us at the charity producing guidance for patients.”
“For our community it feels like we are out of sight, out of mind and the pandemic simply isn’t over for people with compromised immune systems,” she said.
Aaron Foulds, from Keighley in West Yorkshire, has multiple health conditions and previously received antivirals in hospital when he caught Covid for the first time. He also confirmed with his asthma consultant that he would be entitled to antivirals under the latest National Institute for Health and Care Excellence (Nice) guidelines should he catch the virus again.
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But after testing positive for Covid earlier this month he faced a series of barriers to accessing treatment.
Foulds initially called NHS 111 the afternoon he tested positive and was told a clinician would call him back to assess his eligibility. The clinician phoned and confirmed he was eligible for antivirals. Foulds was then told an ambulance would attend him to carry out health checks, and he would receive another call regarding a prescription.
“I thought great, sorted,” said Foulds. “How wrong I was.”
Half an hour later, a healthcare worker called and said he could not confirm Foulds’s eligibility and did not understand why an ambulance had been called. Instead Foulds was told he would receive a call from a GP. Three hours later, after receiving no call, Foulds phoned 111 again, to be told the ambulance had been cancelled and a GP would be calling.
Around 11pm a GP called but said the CMDU would need to call the following day to confirm Foulds’s eligibility as they were now closed. When the CMDU called at 10am the next day, he was asked to explain again why he thought he was eligible for antivirals before telling him he needed to speak to another doctor.
“I said, ‘I’ve spoken to God knows how many people already, and you’re ringing and I’ve still got to speak to somebody?’,” said Foulds.
Eventually a doctor called. “He seemed like his job was very much about finding a reason not to give me medication,” Foulds said.
“At this point, I was absolutely wiped out. I mean I was really unwell at that point.”
Eventually, Foulds received a prescription, but it was not until 8pm on the day after his first phone call that the antivirals were finally delivered.
Azeem Majeed, a professor of primary care and public health at Imperial College London, who is also a GP, said the devolution of responsibility for prescribing antiviral drugs left patients themselves having to work out how to obtain treatment.
“This decentralisation may lead to variable uptake of treatment and increased health inequalities as people from poorer backgrounds, with lower educational levels or limited English language skills, will find it more difficult to navigate the new system and are therefore less likely to receive treatment,” he said.
“Covid is now seen as a much lower priority for the NHS compared to a few years ago,” he added. “Much of the infrastructure that was in place during the pandemic has been dismantled, and NHS managers are focusing on other priorities.”
The Department of Health and Social Care said it would be for local ICBs to comment on individual cases.
