“We're left in the dark”: The ‘invisible’ children with Long Covid left without care
Thousands of children living with the life-changing impacts after Covid have been left without access to appropriate healthcare. But their families say no one wants to know.
Three-and-a-half years ago, Talvin was one of the top in his Maths class, he played chess and wanted to be a professional cricketer. Now 11, he should be preparing for secondary school, but some days he can’t even get out of bed. He needs the use of a wheelchair, and his cognitive symptoms are so severe he can’t read and write without support.
“Talvin was eight when he first caught Covid, and at that point, his life – and our lives – changed, probably forever,” says his mum Harbinder (who requested we only use their first names), now a full-time carer to her son in London.
“He’s a bright kid and he was really good at sports. Now he needs someone with him 24/7.”
“I want my old life back,” says Talvin, who is one of around 100,000 children living with Long Covid throughout England and Scotland, according to 2023-24 data from the Office for National Statistics.
Five years since the start of the pandemic these children are still living in lockdown, too ill to leave the house, attend school or maintain relationships, with “devastating” effects on the whole family.
“It was almost as if we didn't exist,” says Harbinder, when Talvin became unwell after his third Covid infection. “One day you have a perfectly normal life and the next minute it’s all gone, and no one wants to know. You become invisible.”
Long Covid (or Post COVID-19 Condition) is an umbrella term, defined as the “continuation or development” of symptoms three months after an initial infection, lasting at least two months. With more than 200 reported symptoms, it encompasses a range of conditions such as chronic fatigue syndrome [CFS], postural orthostatic tachycardia syndrome [POTS], and paediatric inflammatory multisystem syndrome temporarily associated with Covid [PIMS-TS].
Families tell The Lead the symptoms can be life-changing, but a lack of awareness about the condition has resulted in gaslighting from healthcare professionals, threats of legal action from schools, and judgment and disbelief among family and friends. Families want better provision and support for their children struggling with Long Covid, but first they simply want to be heard.
“When we’d go to the doctors, they wouldn't believe us,” says Slyvie Robertson, 13, who was diagnosed with CFS in 2022.
“Everyone else around you seems to move on from the whole Covid thing, but when you've had your lives changed by it, it's not like you can leave it behind, it's always there.”
After 18 months of attempting to get doctors to take Talvin’s symptoms seriously, Harbinder now considers them among the ‘lucky’ ones. Talvin moved to a different NHS trust and was referred to a specialist Long Covid clinic, and while there wasn’t much available to treat his symptoms, the family at least felt heard.
Talvin’s clinic, like many of these clinics throughout the UK, has now closed, with Integrated Care Boards [ICBs] responsible for the commissioning of Long Covid services, as of March 31 this year. A new report by the charities Long Covid Support and Long Covid Kids, reveals that dozens more are shutting down or at risk of closure, leaving thousands without access to care.
“I’m exhausted by the constant need to fight for his basic rights.”
At the height of the pandemic, there were over 120 Long Covid services across the UK. In response to FOI requests, in January 2025, 46 confirmed they will remain open, with only eight of 13 specialist paediatric hubs continuing to operate. Three-fifths of children and young people surveyed by the charities were not aware of any specialist services local to them.
Access has been a “postcode lottery”, says Mark Faghy, an associate professor in respiratory physiology at the University of Derby and policy advisor for Long Covid Kids. He adds that children and young people are at a “disadvantage from the outset”.
“Paediatric services have not been routinely, largely scaled as they were for the adult population,” he says. “And getting referrals has been challenging because of the lack of awareness and understanding of Long Covid.”
Rapha Holt, from Sussex, was four when he became unwell a few weeks after contracting Covid. Doctors dismissed his symptoms as a virus until he was rushed to intensive care, where he was eventually diagnosed with PIMS-TS (a condition where the immune system goes into overdrive, causing inflammation throughout the body). Rapha developed a heart aneurysm and, now seven, still experiences random fevers, joint pain, and has been diagnosed with CFS.
His mum, Joanna, says he has “never quite been the same”, but Rapha was never offered an appointment with a Long Covid clinic. He saw an occupational therapist, but none of the advice was tailored to children, and they haven’t been able to get an appointment for almost two years.
“We're left in the dark,” Joanna says. “They've lumped him into this service that has no capacity to see anyone.”
A lack of options
Those who have been able to access services paint a mixed picture. NHS approaches are largely limited to symptom management, such as pacing (a technique used to manage conditions like chronic fatigue), occupational therapy and sometimes psychological support. More than a quarter of children and young people surveyed hadn’t received a consultation with a healthcare professional despite NHS commissioning guidelines requiring physician-led care.
Dr Binita Kane, a consultant respiratory physician, took her daughter to Germany for medical treatment when she was diagnosed with CFS following a Covid infection in 2021. She started to improve within a few weeks and gradually recovered to the point where she now leads a “completely normal life”.
Through a private Long Covid clinic in Liverpool, Dr Kane now works with a specialist paediatrician to help other families. Practicing outside of the NHS allows her to treat patients more holistically, she says, and her paediatric colleague can more easily use approaches such as off-label prescribing, repurposing medications that “we know from the scientific literature can and do help”.
“These conditions are under-researched, that's why there aren't licensed drugs for them,” Dr Kane explains. “Drug therapy is important to control symptoms, alongside a multi-disciplinary team [MDT] who can support ‘the whole person’ with pacing, nutrition, school liaison, and helping young people to cope with having a chronic illness. The NHS has MDT teams, but the medical treatment is lacking due to the gaps in research.”
“The impacts societally, economically, and on the health system are just going to keep growing.”
Private healthcare can offer more hope, but it is incredibly expensive. Sammie McFarland, founder of Long Covid Kids, sold her family home to help fund the £600-a-month needed for her and her daughter’s private treatment. They both developed Long Covid in 2020 when public health messaging was still insisting young people were less at risk – something she now believes was a “catastrophic mistake”.
The treatment has given them a better quality of life, but McFarland is aware this is a privilege few can afford. Research has revealed significant disparities in Long Covid throughout the country, with one study finding that those in lower socioeconomic areas were more than twice as likely to develop symptoms.
“I know how lucky we are,” she says. “There are many families who don't have the resources to be able to access the system in any shape or form, and that’s heartbreaking.”
McFarland says urgent action is needed from the government and policymakers to keep clinics open and adopt a long-term strategy for research, treatment, and specialist care.
“Services are being defunded despite ongoing need," she adds. “Individualised care is crucial in Long Covid, which is why it's important to do the research and have clinics open to support this.”
Cases of Long Covid are continuing to rise – 30% occurred in the year leading up to the survey, according to the charity – and the prevalence may be even higher than recorded figures suggest, with a recent study finding as many as one in 10 think they could have it. Those under 25, male, and of non-white backgrounds were most likely to be unsure.
Around half of adults, children and young people, say they consider themselves disabled by their conditions. This leaves adults unable to work, forced into part-time roles or long-term sick leave, and children too ill to attend school, where the system is not equipped to support them. Some, like Talvin, have had no access to suitable education for years.
“He’s three years behind his peers and every day that gap gets bigger,” says Harbinder, who has been waiting almost a year for an Education, Health and Care plan from the Local Authority.
“I’m exhausted by the constant need to fight for his basic rights.”
Kathy James-Castle was driven to put in a complaint to her Local Authority in Devon about her nine-year-old daughter Orla’s school when she was diagnosed with post-viral fatigue.
“We had to fight to be taken seriously,” she says. “I had fines and letters threatening legal action. My relationship with them was completely breaking down.”
McFarland says Long Covid Kids has directly helped families in cases where care proceedings have been brought against them.
“Every month we're hearing of families facing not just fines, but care proceedings, and allegations of making their child sick or fabricating illness. These are serious concerns that stem from a lack of awareness,” she says.
“We've intervened as a charity in several cases where we've attended care conferences and given evidence, but we are a small organisation, and we’re not set up to deal with that level of advocacy.”
Pushed out of school
Some people have been forced to leave mainstream education altogether.
“I wasn't able to go into school enough to learn anything significant, and when I was there, it would just make me crash when I got back,” says Avalyn Godfrey, 15, who started homeschooling in January 2024.
Her school in Cheshire “didn't know how to help her” when she became too ill to attend full-time, and her family is now self-funding her GCSEs at a cost of around £300 per exam.
“There's a hidden cost for these kids that are being left behind by the schools,” adds her mum, Donna.
In a letter to the Health Secretary, Long Covid Kids, along with Long Covid Support, has called for a Long Covid surveillance system to track health, employment, education, and economic impacts. As it stands, the reality is “bleak”, says Prof Faghe, and not just for the families directly affected.
“The impacts societally, economically, and on the health system, are just going to keep growing,” he says.
“This is our next generation of engineers, scientists, doctors and nurses, who are not getting the best chance. You can see how it manifests into a much bigger problem.”
The impact is already being felt. One study found that Long Covid costs the UK an extra £23m a year in GP and primary care consultations, while the Economist’s Long Covid Impact report estimated it cost the economy £12.2 billion in lost GDP in 2024 alone.
“You're seeing it come through in different figures,” says McFarland. “The increase in disability, absenteeism, and people claiming financial support. Without trials and treatments, we can't be sure what things will look like, other than what we know right now – which is that these young people are not well enough to go to school, they're not well enough to live independently, and their care needs are significant.”
Based on its findings, the charity has set out eight recommendations for the Department of Health and Social Care [DHSC], to address what it describes as an “urgent public health crisis”, including the implementation of a national Long Covid strategy. But in order for any of these to come to fruition, there must be “formal recognition” of Long Covid as a disabling condition.
“We need the government to acknowledge this is a problem,” says Dr Kane.
“Without the acknowledgement of bodies such as the Royal College of Paediatrics and Child Health, without paediatricians within the system fighting for this to change, it's not going to be prioritised. I see the enormity of the suffering that is ongoing for these families and it’s shocking how little support there is. This is our future generation.”
What the government had to say
The Department of Health and Social Care were approached by The Lead for comment addressing the issues raised in our report.
A government spokesperson said: “Long Covid can have a debilitating impact on people’s physical and mental health and we are committed to ensuring there are quality services for everyone suffering with it, in every part of the country.
“No single treatment currently exists for the condition, which is why we have funded research, including the world’s largest study to understand the impact of Long Covid in children.”
They added NHS England had recently completed a nationwide long Covid 'stocktake' to assess access, activity and outcomes for the treatment of Long Covid.
The research mentioned by the government is the “Children and young people with Long-Covid” (CLoCK) study which is being undertaken through the National Institute for Health and Care Research (NIHR). Funding applications are currently open for research into any aspect of human health including Long Covid.
Without specialised support and treatment, the future for many children with Long Covid is up in the air. And as more clinics shut down or are at risk of closure, thousands of young people will be “left in the dark” with no access to care. Here at The Lead we will continue to report on this systemic failure, and others like it as the fallout from the pandemic continues to reverberate through every strand of society – with the most vulnerable always the worst impacted. Elsewhere in our reporting on young people, Ellie Broughton investigated the controversial use of personality disorder diagnoses in children, and Lauren Crosby Medlicott dug into the unprecedented rise of homeschooling.
About the author: Sarah is an award-winning journalist specialising in health, drug policy and social affairs. Her work has appeared in publications such as The Telegraph, Forbes, The i Paper, Stylist, The Lead, and Byline Times.
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