Q&A: UK doctor says Britain is failing children with long COVID

LONDON - Respiratory consultant Binita Kane was working on the frontlines of the pandemic in Britain when her 10-year-old daughter Jasmin developed long COVID in 2021.

Tens of thousands of children in Britain - and millions worldwide - have long COVID, impacting their health, education and futures.

Symptoms can include debilitating fatigue, cognitive issues, heart and lung damage, and joint pain.

Kane's struggle to get treatment for her daughter led her to set up a long COVID clinic in Liverpool, which sees patients from across the country.

As the world marks the fifth anniversary of the pandemic, Kane spoke to reporter Emma Batha about the battles parents face to find help.

How difficult was it to get treatment for Jasmin?

The worst thing is the feeling of sheer helplessness when you know there's something seriously wrong with your child and everywhere you turn, there's no support.

My previously very fit child was completely incapacitated, but I was being told, 'There's nothing we can do'.

Families are being forced into the private sector because they can't get help from the National Health Service (NHS). I was lucky because I could look at the research and connect with global experts.

I ended up taking Jasmin to Germany to see a doctor who was willing to go the extra mile. We had to make four trips for consultations and repeat prescriptions.

Eventually I found a paediatric consultant in Britain who was willing to help, and we now run a children's clinic together so other families don't have to go through the same thing.

What's the financial impact of long COVID on families?

Parents face a triple whammy. They can lose a lot of income if they have to give up work or go part-time to look after their child.

On top of that they're trying to finance private care. And then, even if they find a treatment that helps, the NHS will not prescribe those medications, so they must pay for those too.

My husband had to fold his business to care for Jasmin. We lost a huge sum of money, but we were very lucky that we could cope on my income.

Why are people struggling to get care?

It's a desperate situation for families up and down the country.

The NHS long COVID clinics mostly offer talking therapies, occupational therapy and physiotherapy, but few medical treatments. Many are now being disbanded so there's less support than ever.

As a doctor, if you want to treat patients with long COVID, it's difficult in the NHS because of funding, structural problems and prescribing rules.

It's not right that families have to pay. Most are not wealthy. They're often scraping money together to see private specialists. I'd give my right arm to do this within the NHS, but it's not currently possible.

What should the government and health service do?

Firstly, we need recognition that this is a serious condition affecting thousands of children. Secondly, we need a drive to translate existing scientific information into treatments and thirdly, investment in the education of healthcare professionals, research and services.

There must also be a focus on prevention as repeated COVID infections can increase the risk of long COVID.

And the government has to support families with education. A lot of these children can't learn in a school environment because it's noisy and stressful.

But we've got a situation where children struggle to get a long COVID diagnosis, and then the schools are on the parents' case for keeping them out of school.

Some families are getting accused of fabricating or somehow causing their children's illness, and being referred to social services. Some have even been threatened with having their children taken into care.

Why is long COVID so ignored?

There are historical, political and societal factors feeding into the mass denial around long COVID.

If you look at the dark history of the medical world's treatment of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), this is part of the same narrative.

In the 1950s and 60s, people understood post-viral illness a lot better than we do now, and research was happening. But in the 70s two psychiatrists labelled the illness a form of "hysteria" and it became psychologised, something that has stuck. We're not taught about ME in medical school.

At one stage, illnesses like epilepsy, asthma and cancer were also thought to be in the mind, but research progressed and we developed diagnostics, treatments and services, and the specialists to deliver them.

That hasn't happened with ME, and now long COVID is going down a similar route despite thousands of research papers telling us what this virus is doing to people.

The mass trauma doctors went through in dealing with acute COVID also plays into this. Everyone wants it to have gone away. And because people with long COVID are often behind closed doors and unable to engage with healthcare, no one has to think about them.

It's out of sight, out of mind.

How is Jasmin now?

She has recovered which is a huge relief and we feel extremely lucky. But there's no single treatment that will work for everyone, so we desperately need research.

Are other countries doing better on paediatric long COVID research?

I'm not aware of any. Governments and the big academic institutions haven't got behind this, neither have professional bodies like Britain's Royal College of Paediatrics and Child Health.

It's generally independent researchers trying to drive this forward. They have to go to extraordinary lengths to find pots of funding. That has to change.

Binita Kane is a medical adviser to the charity Long Covid Kids. This interview was edited for brevity and clarity.

(Reporting by Emma Batha; Editing by Ana Nicolaci da Costa.)