A Corby man living with an incurable blood cancer has been unable to access Covid-busting antiviral treatment, despite being eligible after testing positive for the virus.
Phil Edwards, 60, was diagnosed with myeloma in August 2021 and is classed as 'clinically extremely vulnerable' and eligible for the Covid antiviral pill and/or monoclonal antibodies.
All patients deemed clinically extremely vulnerable in England were supposed to be identified by the NHS by January 10 and receive a letter stating their eligibility for the drugs, as well as a PCR test in case they started experiencing Covid symptoms.
So when he tested positive for Covid on December 29, Phil and his wife Tracey expected that he would be given the drugs within the five-day window - but he was told he couldn't have them because he wasn't ill enough.
Tracey, 57, said: "We tried for several days to get him the antivirals but to no avail. My daughter and myself made many phone calls to his GP, the hospital he is under and 111.
"He was told several times he wasn’t eligible as his temperature was only slightly elevated."
"I spoke to nurses, doctors, clinicians and health advisors but not his consultant even though I called the ward several times. One doctor even said the drugs were not available. Finally we managed to get a doctor to prescribe the drugs only to be told no chemist had them."
Phil remained at home while they tried to track down the antivirals.
After five days at home his breathing became laboured and his temperature spiked.
Tracey said: "Because he's on chemotherapy their real worry was sepsis. They took him away in an ambulance and I couldn't go with him because of Covid rules. He was on his own for three days in a side ward."
Phil was never given the antiviral drugs which would have made his symptoms less severe and allowed him to carry on his vital chemotherapy appointments at Kettering General Hospital - now on hold due to his recent Covid diagnosis.
He had been working at the family firm White Knight - clean-up specialists - during his cancer treatment but has found Covid far harder to recover from.
Tracey said: "I don’t know what the Government are doing but it’s not enough. Nobody knows where the pills are or what they are and who is eligible.
"I went through all the correct channels. We had a letter saying my husband was eligible and a positive PCR test. I can’t tell you the trauma of being on the phone for days and people not listening to me.
"I’m not letting this go. There seems to be a massive lack of awareness by medical staff about this issue.
"I am angry and I am sad. This could have been avoided. The Government don't seem to be able to communicate. Nobody knew what they were doing to roll out the whole thing yet they have been bigging it up - It's crazy.
"More than anything I am sad. It's set us back so far. He's been through such a bad time. We've worked all through his treatments.
"Thank goodness he's now turned a corner after Covid but this could have been avoided.
"Our GP has raised this as a major incident as he recommended my husband receive the drugs and was eligible. As far as he was concerned, he thought my husband had got them.”
Myeloma UK head of patient advocacy, Shelagh McKinlay, said: “The advice from the UK government is clear: if you’re clinically extremely vulnerable, have a positive PCR test and have been experiencing consistent or worsening Covid-19 symptoms for less than five days you are eligible for treatment.
"The fact that some patients are being denied these drugs on the basis that their symptoms are too mild is somewhat worrying since antivirals are most effective in the early stages, before symptoms have progressed and become too severe.
"We would advise myeloma patients who test post positive for Covid-19 and are still waiting on their letter or who have been told they are not eligible for treatment to contact their GP or haematologist as soon as possible.”
NHS England says that the latest 'Covid treatments are targeted at the highest risk patients, determined by an independent advisory group commissioned by the Department of Health and Social Care and agreed by the UK four nations'.
They say that 'most patients have been notified by the NHS nationally that they might be eligible for Covid treatments if they test PCR positive for Covid. Some patients, such as newly diagnosed patients, are not identifiable on national datasets and in these cases NHS hospital consultants have been asked to identify and reach out to patients to make them aware of treatment'.
NHS trust and foundation trust medical directors and CCG medical directors were sent a letter on this new service on December 20, 2021
An NHS spokesman said: “Thousands of the highest risk patients with Covid-19 have now been treated with these lifesaving drugs as part of this service, which is only a few weeks old, and local doctors are ensuring patients are treated where they might benefit from treatment."
Clinically vulnerable people living anywhere in the UK will be able to access sotrovimab, Ronapreve or molnupiravir through the NHS.
This is an option for people who meet the following criteria:
Have a COVID-19 positive PCR test result
Have had symptoms for less than five days
Are aged 12 or over with a pre-existing condition that gives them a higher risk of serious illness due to Covid-19. This includes stem cell transplant recipients, blood cancer patients and people taking immunosuppressing treatments.
This gives myeloma patients the option to access these treatments if they test positive for Covid-19.