Long Covid campaigners descend on Downing Street as 119,000 UK kids suffer horror symptoms

Long Covid: Dr Sara Kayat discusses impact on children

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The group of 26 parents and children, from Long Covid Kids (LCK), will submit their “Support Guide” to Prime Miniter Boris Johnson during an appointment to encourage action at 12pm today. They will also hand over letters detailing their experiences, hopes and concerns about the overlooked form of the illness. According to the World Health Organisation (WHO), current evidence suggests up to 20 percent of people experience a variety of mid and long-term effects after they recover from their initial Covid infection.

Founded by Sammie Mcfarland, LCK represents around 119,000 children in the UK currently living with long Covid, 21,000 of which are still suffering from symptoms 12 months after their initial infection. 

Jacob Parish, an 11-year-old boy from Grimsby, was perfectly healthy until his parents tested positive for COVID-19 in March last year.

Victoria Parish, Jacob’s mum, told the Daily Express: “About six weeks after my husband tested positive, we noticed he was slowing down when he was going on the dog walks. 

“He could not keep up with us. He was tired. He was starting to look really pale with very dark rings around his eyes.

“He was fine up until COVID-19 came into our house in March. We were in lockdown we weren’t going anywhere.” 

A year on, Jacob still has an array of symptoms of long Covid that are having a significant impact on his daily life.

From dizziness, nausea and tiredness, to muscles weakness and low blood pressure, Jacob’s condition has even meant that he cannot even walk.

Ms Parish added: “It has been a very difficult year. We had seven months up and down at the hospital. It got to September time when he was literally in a wheelchair.”

Making matters tougher for the family, health experts were puzzled by Jacob’s case and failed to link it with long Covid.

Ms Parish said: “We had to take matters into our own hands, we weren’t getting a diagnosis. They said ‘no Covid, no tests’. We were told on more than one occasion that it was a mystery.”

But when they met with a doctor from HCA Healthcare, they were told that Jacob’s symptoms met the WHO’s criteria for the condition.

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Jacob and his family are among a group of thousands of others who are frustrated about the lack of awareness on long Covid.

Corbin Whapshott, 16, and his sister Eva, 14, also ran into problems getting the appropriate attention after it was confirmed they had long Covid two years ago.

In April 2020, their parents tested positive for Covid. 

But while their folks recovered after a few weeks, the youngsters did not.

Their mum, Louise Whapshott, said that when Eva was taken to a paediatrician after it was confirmed she had long Covid, she was met with an alarming response. 

Ms Whapshott told the Express: “When we saw the first paediatrician, she said ‘I honestly do not know enough about this. We do not know how to treat this’, which was really scary at the time because we did not know what we were dealing with.”

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It was later confirmed that both the children had long Covid, which they are still suffering from today.

Ms Whapshott said: “If he (Corbin) does something, it just knocks him for six. It is tough, it is horrible.”

Corbin has not been to school since April 2020 and his sister was spending up 19 hours a day in bed due to fatigue at the worst moments.

Ms Whapshott added: “They are not just tired, they are more than tired. It is like having jet lag and the flu together.”

But there is a glimmer of hope, thanks to the incredible work being done by LCK.

Ms Whapshott said: “When I came across LCK it was great to see that it was not just in my kids’ heads.”

Amitava Banerjee is a leading professor from the Institute of Health Informatics at University College London (UCL).

When Express told him about the charity, he immediately said it had his “full support”.

Prof Banerjee, who is also an NHS frontline doctor, explained that because little is understood about long Covid in kids, it is hamstringing effective care from being taken. 

He told the Express: “There is an issue of training and awareness. 

“Ruling out other underlying conditions and causes is a major factor in trying to get the right rehabilitation.”

Prof Banerjee, who is a clinical data scientist, explained that this issue stems from long Covid not getting the recognition it deserves. 

He added: “There was a delayed recognition of long Covid compared with acute Covid anyway, and there was even further delay still with that recognition with children.

“And there has been much less funding and interest in services and research in children. And that is not just in the UK. There was a neglect as people were thinking that children would be fine with getting infected and would recover no problem.”

Prof Banerjee said it was time for the Government to act on the advice of experts.

“Among some policymakers and advisors, there was a feeling that kids would be fine and they do not need to worry at all. The ministers are not doing anything even knowing that a few children might be affected.“

The researcher warned that failure to act could see the issue snowball further.

He added: “Long Covid is less common, but that does not mean it is less severe. I know of children who are seriously debilitated. 

You can find out more about Long Covid Kids by visiting their website here.

https://www.longcovidkids.org/

“It is important that we at least entertain the possibility that this could be quite severe in children because of the potential for longer-term illness. They could be two years in, and for children that is their formative years of education. There are relatively simple measures to mitigate the effects. We should be thinking about and I haven’t seen much in that regard.

“To date, we have not done anything to manage infection rates in schools really. Whether that is simple mask-wearing. Whether that is really giving clear messaging about vaccination in children.”

The UK has now set up 15 specialist paediatric hubs to provide post-Covid care and the Express has contacted the Department for Health to find out more about their plans for the future.

Scientists at UCL have also revealed the first standardised definition of the condition. 

It states that this is when symptoms that impact childrens’ physical, mental or social wellbeing last for a minimum of 12 weeks after a COVID-19 test. It is hoped that this will allow researchers to better study the disease course, the different outcomes, and help establish how many children are affected by it.

The National Institutes of Health has launched a study that will track up to 1,000 children and young adults who tested positive for Covid. 

It will monitor them for up to three years to establish what the long-term consequences are on their health and quality of life.

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