Long Covid treatment guidelines are three years out of date says Doctor

Stanley Murphy-Johns

Doctors, charities, and victims of Long Covid are calling for “outdated” NHS guidelines on Long Covid to be updated.

The UK National Institute for Health and Care Excellence (NICE) has not updated the guidelines for doctors to follow when diagnosing and treating Long Covid since November 11, 2021.

Since then, many clinical trials have been run and some of them have yielded very promising results, but no changes have been made.

Dr Margaret O’Hara, medical researcher and trustee for the Long Covid Support Charity said: “They should have been updated a year and a half ago – it’s utterly ridiculous. It’s beyond my comprehension how they can claim that there isn’t enough evidence to update those guidelines.”

Those suffering with Long Covid have often struggled to be diagnosed in their first visits to a GP.

The NICE guidelines are the first port of call for GPs in clarifying facts on an illness, and the possible treatments, so if they are outdated it may be a reason for these failed diagnoses.

“Some GPs are clued up and know all about it and others might not even think it’s a real thing.” said Gareth Evans, a Trustee for the Long Covid Support charity in Wales.

When Wendy Edwards, a nurse, first went to her GP having had Covid for a few weeks, she asked to be referred to a Long Covid Clinic.

The GP’s response was: “Well I don’t think we’ve got a Long Covid clinic.” At that stage, her GP had “no idea” whether there was any Long Covid support available at all.

Referrals 

Even after managing to get referred, some patients have described treatment at those clinics as a “lottery” depending on which one they go to.

“Some clinics are nothing more than six weeks of a support group, it’s just the offer of a chat with an occupational therapist and a physio, there are no medicines, no advanced diagnostics, it’s just a fob off really.” said Dr O’Hara.

After battling to be seen at an adult clinic aged 17, Bethan Davies was discharged from the clinic after a few meetings with some techniques to manage her Long Covid.

“They basically said we have told you everything we know so good luck.” said Bethan, from Swansea.

There has been a wealth of new research on Long Covid since 2021. Dr O’Hara referenced diabetes drug Metformin which was trialled and published in Lancet Infectious Diseases last year.

The study found that when the drug was taken within four days of a positive Covid test it reduced the onset of Long Covid among the participants by 41%.

Dr O’Hara, who first contracted Long Covid in 2020, used Metformin in July this year after catching Covid-19 for a fourth time.

“Here I am after just a month and I was able to go out, we went for lunch and to a book shop. A month into my last infection I was still in bed.” said Dr O’Hara.

Dr O’Hara was prescribed Metformin by her GP after sending them the Lancet study to prove that it was worth trying.

Wendy Edwards and Dr O’Hara both worked in the health sector and had more background knowledge than most.

They were only able to receive that treatment or be referred to a clinic because they knew to ask. This does not seem like a functional way for the system to operate for everyone.

“If my GP wasn’t open-minded enough to give me that prescription, I’d probably still be in bed right now.” said Dr O’Hara.

NICE review their guidelines every three months. They insisted that: “Despite studies on possible treatments for Long Covid, our surveillance indicates that there remains a lack of strong evidence to support any of these that would signal an impact on the guideline.”

NICE require significant clinical trialling to be undertaken before a new drug is recommended, which is for the safety of patients.

Dr O’Hara accepted this, but suggested reviews of something like Long Covid, where the science is developing all the time, should occur more often.

“You can’t use your old processes for a totally new disease.” said Dr O’Hara.

NICE regulations apply across the UK, but the NHS itself is devolved. This means that the possible resources and treatment available may vary across the UK despite existing under the same set of guidelines.

“It’s a postcode lottery in terms of getting help, acknowledgment or even a diagnosis.” said Gareth Evans.

NHS England ringfenced money specifically for Long Covid clinics at the end of 2020, they have 46 clinics in total.

While clinics in Scotland, Northern Ireland, and Wales have been set up by individual doctors willing to, “fight their health-boards.”

“It depends on having a doctor who cares enough, is knowledgeable enough and tenacious enough to fight their board.” said Dr O’Hara.

NICE maintain that they: “take a proactive approach to responding to events that may impact on our recommendations.”

The Metformin research was published on June 8, 2023. Since then, countries such as Canada have reviewed their guidelines and are considering adding Metformin to their recommended treatment list for Long Covid.

NICE maintains as of July 2024 that: “There were no strong triggers for updating the guideline.”