Long Covid Kids Opening Submission to the UK COVID-19 Inquiry | September 2025
- Long Covid Kids
- Sep 29
- 4 min read
29 September 2025. Today, Module 8 of the UK Covid Inquiry opened before Baroness Hallett at Dorland House. Children and young people living with Long Covid were present and represented by Long Covid Kids and Long Covid Kids Scotland.
A New Childhood Disease Ignored
Long Covid in children is not rare. It is a disabling, multi-organ condition that emerged in 2020 and continues to affect thousands. The World Health Organisation describes its impact as:
“Changes in eating habits, physical activity, behaviour, academic performance, social functions and developmental milestones.”
Yet despite this, children’s suffering was minimised, dismissed, and disbelieved, even at the highest levels of government.
Our opening submission was delivered by Sangeetha Ienger, Garden Court Chambers, instructed by our legal representative Jane Ryan, Bhatt Murphy..
Government Disregard
Evidence disclosed to the Inquiry shows how children’s experiences were sidelined:
In the Department for Education, a consultant paediatrician at Public Health England advised against “labelling” children as having Long Covid.
In October 2020, Prime Minister Boris Johnson wrote that the data on Long Covid was “BOLLOCKS” and akin to “gulf war syndrome.”
In February 2021, he again questioned whether Long Covid was real: “Do we really believe in Long Covid? … I bet it is complete gulf war syndrome stuff.”
Even after being advised by Professor Whitty in June 2021 that prevalence in children was around 7% according to ONS data, he wrote: “So not exactly gulf war syndrome?”
These comments reveal a culture of denial that permeated government decision-making — including at the Department for Education.
In our submission, ask four key questions:
Children Ask Four Critical Questions
As the Inquiry opens today, families caring for children and young people with Long Covid are asking:
Why was the physical impact of the virus on children deprioritised, despite clear evidence of harm?
Why was the severity of Long Covid deliberately downplayed?
Why did the government fail to develop policies to protect children from Long Covid?
Why were parents, schools, and carers not warned about the risks to children?
Kitty McFarland, 19, Youth Advocate
““I feel robbed of my childhood, normal experiences and the education I was entitled to. I want rock solid action that will support my future and all the kids living with Long Covid, that is why I am here ”
Children’s Voices Must Be Heard
Behind the statistics are real lives. As of April 2024, an estimated 65,988 children aged 3–17 in England and Scotland were living with symptoms lasting 12 weeks or more. Over 111,000 children had symptoms of any duration.
Their voices cut through the numbers:
“One day he said, ‘I am a little nobody just sat on the stair on my own. Everyone forgets me. No one wants to play with me as I am always ill.’”— B., age 6, infected at age 3, with three reinfections
“I’ve been mostly housebound for three and a half years. If I need to walk more than five minutes, I need a wheelchair. It’s unrecognisable from how I was in 2019.”— A., age 17
These children are not statistics. They are a generation failed by silence and disbelief.
Sammie McFarland, CEO & Founder, LCK
"We teach our children to say sorry. It’s time the government did the same for children and young people with Long Covid.
The government must issue a timely, formal apology, for failing to recognise the condition sooner, for the delays in response, and for ongoing inaction. That apology is vital to reduce stigma, validate children’s experiences, and begin rebuilding trust in healthcare and education systems.
Children are not little adults. Yet during the pandemic, their unique needs were minimised and dismissed. When families and clinicians raised the alarm that Covid was harming children, we expected action, but warnings were ignored. The public was told children were not at risk, and to this day that false message has never been corrected, despite ongoing infections, reinfections, and new cases of disease and disability.
The truth is that Long Covid has had a profound impact on children’s health and education. Those with mild and moderate disease are still struggling without the school adjustments and healthcare they need. Those with severe and very severe disease are at home, behind closed doors, lying in darkened rooms, invisible, declining, and unsupported.
The absolute priority must be safe schools. Clean air, ventilation, and HEPA filters protect against Covid, and all airborne viruses. This is basic public health.
We urgently need dedicated services, training for clinicians and teachers, and real data and research on paediatric Long Covid. Children living with Long Covid deserve recognition and care, and future children deserve prevention. Until the government says sorry and takes action, those already affected will remain unsupported, and more children will be put at risk.
Our children and young people want, and need, rock solid action."
On the 1st October 2025, Sammie will give evidence to the inquiry on behalf of Long Covid Kids. You can follow the children's module throughout October on the inquiry YouTube.
