Long Covid Kids supports 7,000 children whose parents say they have been ‘gas lit’ by NHS, schools and social services, as the inquiry uncovered pandemic-era advice against diagnosing the condition
Families with children left disabled by Long Covid have told a national inquiry “it’s almost as if we don’t exist”.
Thousands of children have been left seriously disabled and often bedbound due to the post-viral syndrome which their parents say much of the NHS still refuses to recognise.
They told the Mirror of their shock at discovering from the Covid-19 Inquiry that medics were told during the pandemic not to “label” child sufferers with Long Covid – meaning thousands have never been properly diagnosed.
The charity Long Covid Kids supports 7,000 families who say they are just some of those who have been ignored and “gas lit” by NHS practitioners who, they claim, often assume it only affects adults.
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Mum Harbinder Dhaliwal has three children with Long Covid and arrived to watch Boris Johnson ’s appearance at the Covid Inquiry on Tuesday where he was questioned about the impact of school closures during the pandemic.
Harbinder said: “The whole focus has been on a few months of lost learning. My children haven’t been well enough to go back to school for the last three years. We are not even on the radar. It’s almost as if we don’t exist.”
Harbinder’s 12-year-old twins Talvin and Tara have Long Covid as well as her 15-year-old daughter so she had to quit her career as a senior manager at a consultancy to be their full-time carer. She added: “It’s horrific to have your child unable to get up out of bed or go to the bathroom, or feed themselves. My children can’t read any more and they struggle to remember things.
“They were all academic and sporty but we now have a collection of wheelchairs where we used to have footballs, hockey sticks and tennis rackets.”
Jana Touati’s son Samir, aged 15, has been left needing a wheelchair due to Long Covid contracted when schools were reopened during the pandemic. Jana, from east London, explained: “They reopened schools without appropriate measures in place. There was no social distancing or proper ventilation. Within about three or four months they were all coming down with Covid.
“Samir had just started Year 7 and he caught Covid and never recovered. He was a very bright, fit and academic child. Within four months he was unable to walk and he was living downstairs because he couldn’t get up stairs. He now struggles to walk more than a few hundred metres and suffers with cognitive difficulties and muscle spasms.”
Office for National Statistics data shows one in 165 children and young people – 72,000 individuals – reported Long Covid symptoms after a second Covid-19 infection. But there is no data on the number still living with lifelong disability as a result because many have not received a diagnosis.
The Covid-19 Inquiry this month presented a key document from a Government pandemic meeting from the summer of 2020. There the minutes show that Dr Shamez Ladhani, the Consultant in Paediatric Infectious Diseases at Public Health England, was “clear that children should not be labelled with Long Covid (ie a medical condition) as this has the potential to cause longer term, psychological harm”.
Desperate families say there is a lack of acknowledgement from the NHS, schools and social services that Long Covid is even an issue for children which they say means professionals often dismiss their plight as “all in their head”.
Harbinder, from north east London, said: “Most children are not diagnosed because there is no NHS pathway for diagnosis. Most parents are gas lit and it’s treated as a mental health condition. The number of children with this condition are not measured. The clinics for Long Covid are closing so where does that leave us?
“There is no guidance from government for schools or social services. All families have had issues with schools because all they are interested in is attendance. Our lives have been turned upside down and we’re facing questions from social services about why our child has not been to school. It’s disgusting and an appalling dereliction of duty.
“I spend my life trying to get my child to eat something or I can spend the day helping my son get on and off the toilet. We were an active, social family but our lives have been shattered and our children’s futures are unknown.”
Jana added: “They are invisible children and there are thousands of them. We really need help to make them visible and not forgotten.”
Last year the world ’s largest study of long-Covid in children was published suggesting that 70% of young people in England with Long-Covid recovered within two years. But this still leaves a lot of young people with lasting symptoms.
Claire Every, spokesperson for Long Covid Advocacy, said: “The government’s failure to prepare schools for Covid-19 wasn’t accidental – it was ideological. When Boris Johnson compared Long Covid to ‘Gulf War Syndrome,’ he exposed a belief system that dismissed biological illness as psychologically influenced. That same mindset drove policies that left children unprotected, unresearched, and unheard.”
In a witness statement to the Covid Inquiry, Sammie McFarland, founder of Long Covid Kids, said: “Contrary to the public health messaging at the time, our children’s symptoms did not pass quickly. Instead, what were initially described as mild or non-severe acute illnesses turned into long lasting and debilitating conditions.
“My daughter’s story is just one of thousands. Her experience reflects the failure to protect children from infection, the lack of early recognition of Long Covid, and the ongoing challenges young people face in accessing care, support and understanding.”
An NHS England spokesperson said: “More than 100,000 children and adults in England have been supported by specialist long covid clinics since 2020 with NHS staff helping them deal with the physical, cognitive, and psychological effects of Covid-19.
“National guidance and funding has been issued to local health leaders to help them create long-covid services which best meet the needs of their local area. If a parent or carer is concerned that a child or young person could be experiencing ongoing symptoms following covid, please speak to your GP.”
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The Long Covid study of 12,600 children by Great Ormond Street Hospital and University College London Great Ormond Street Institute of Child Health found teenagers were less likely to have recovered. Girls were twice as likely to still have the syndrome two years later.
A Government spokesperson said: “Every child deserves to have their symptoms taken seriously and to receive prompt, accurate diagnoses and care. Long Covid can have a debilitating impact on people’s physical and mental health, and we are committed to ensuring there are quality services across the country for everyone suffering with it.
“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.”