There is a commitment to finding the 'ghost children' missing from schools in England. Many now equate these absences to the Covid-19 partial school closures alleging that these have also caused an overwhelming deterioration of mental health in children and young people (CYP).
But what about infection harm and clinically vulnerable families? It has been accepted for years that children can be profoundly affected by chronic post-viral illness. Did society really believe that SARS-CoV-2 would be different?
Long Covid Kids is determined that no child should be forgotten. We, therefore, raise awareness of and support all CYP and families affected by ongoing symptoms from SARS2 infection including morbidity and mortality.
This article follows our popular summary article containing analysis running from the beginning of the pandemic until April 1st, 2022, when final protections were removed in England.
Contents
Section 1
Section 2
Section 1
Infection. The missing piece
From as early as January 2020 the UK was reassured that SARS-Cov-2 infection in children was akin to a cold virus; children didn't appear to significantly transmit, and they didn't become ill or die. This narrative has been consistently backed by flawed and misrepresented research which has caused confusion and embedded it into the heart of communities. Paediatric research and funding have been slow and the myth that children are rarely harmed by infection lingers along with handwashing being the best defence. SARS-CoV-2 is airborne.
The fallacy of relative privation asserts that if something is worse than the current problem, then the problem being discussed isn't really important. Comparing adult with child data has led to this. The magnitude of adult COVID-19 hospital admissions combined with their publicity has ensured that the plight of adults has consistently overshadowed all child SARS-CoV-2 infection experiences with any reference to child harm usually framed as 'scaremongering'. Long Covid Kids has worked hard to counter this narrative by striving to be a voice for all children and young people impacted by SARS-CoV-2 infection.
From the very beginning of the pandemic, Long Covid Kids have presented the real story of lived experience on the ground as it has unfolded. In addition to this, since records began our data team have extrapolated child from adult data to analyse the effect of the pandemic specifically on and between children.
Children are not small adults
Children's bodies are designed for growth
Children don't usually become chronically ill or die
Two years on Long Covid Kids are now a Charity. Our mission is awareness, support, research and action. By removing adult data from that provided by the Government Dashboard, The UK Health Security Agency and The Office for National Statistics we ensure that we ‘see’ children. We look into child-specific official statistics, evidence impact of COVID-19 infection on the child population and present charts to illustrate that data.
Children Can Be Reinfected With SARS-CoV-2 Multiple Times
Children continue to be the age group most affected by reinfection. The latest Government data on vaccine uptake shows only 6% of children aged between 5-11 in England have had two doses of a Covid-19 vaccine. Data as of 15th September shows that 50% of cases in ages 5-14 are reinfections. The graph on the left shows us the percentage of possible Covid-19 reinfections experienced in different age groups in England. The graph on the right shows us the percentage of children in England reinfected with
SARS-CoV-2 after 90 days*.
*A positive test outside of 90 days is considered reinfection. Positive tests for any variant of COVID-19 within 90 days are considered part of the same case episode" UKHSA
Real-time epidemiological estimates from ONS Community Infection Survey data indicate that many children (ages 2-15) have been infected at least twice (note limitations in the method).
From this government data, we can summarise that children are predominantly unvaccinated, and many have already suffered repeated COVID-19 infections as we head into winter 2022.
The Effect of Covid Reinfection on People Living with Long Covid
One year after we released our first preprint, results from our 2020 Support Services research were formally published in Future Medicine's medical journal.
Long Covid Kids were able to offer an early insight into Long Covid which has proven to be an essential piece in the Long Covid jigsaw.
With these experiences in hand, we have now partnered with Long Covid Support for the first patient-led survey capturing the experiences of people living with Long Covid who have been reinfected with COVID-19. Insights can be found below while the full report can be found in our article here.
For 79% of child respondents, reinfections made at least some of their Long Covid worse. This is similar to all respondents including adults and highlights that infection and reinfection are not without consequence for our paediatric population.
Gavi, the Vaccine Alliance helps vaccinate almost half the world’s children against deadly and debilitating infectious diseases and featured our survey in a September 2022 article, summarising the situation perfectly:
"The researchers say this is one of the first published studies of the effect of reinfection on Long COVID and their findings indicate the need for more investigations. The findings indicate that, as most people get Long COVID after their first infection, avoiding infection, especially in children is critical. The results also underline the importance of avoiding reinfection even if people are fully vaccinated and have recovered from Long Covid"
Click the image to read the article
How Common Is Long Covid in Children?
Sadly, there has been a well-documented and consistent misrepresentation of child Long Covid data and research findings in research articles and mainstream media since early on in the pandemic. Often lowest prevalence figures are published with misleading headlines despite experts raising concerns about the methodology gaps used in the research. Subsequently, Long Covid is the legacy of this novel neurotropic virus.
"I challenge those who rubbish self-reporting of Long Covid. I say, there's no better way in the absence of a valid and reliable biomarker or specific imaging finding.
As a general rule, believe what people tell you about the difference in their bodies before and after infection"
February 2022
Explainer
Prevalence estimates vary. This is because different studies use different methods
● Researchers differ in their choice of symptoms to study
● Different studies look at a varied number of symptoms
● The symptom duration often differs
● How a case is determined can differ
● Calculations can be based on all children infected or all children in the population
● Definitions of relapsing and remitting symptoms vary
● Use of a control group and how robust the control group is can differ
The world’s largest study on Long Covid in children reports on Long Covid in children report a 14% prevalence.
There is now a World Health Organisation agreed definition for Long Covid in adults and a definition for the purposes of conducting research on Long Covid in children.
Definition for Long Covid in children
Until we have a worldwide agreed definition for paediatric Long Covid and formally count prevalence, the scale of the burden will remain unclear (1st April 2022).
Definitions for recovery
Each person's perception of recovery is individual to them.
Getting better is common and can include adapting lifestyle, the ability to identify and respond to triggers, and willingness or use of aids and appliances.
Pre-infection health is less common. Standard, universal definitions for both are urgently required.
ONS Schools Infection Survey Long Covid Data
In March 2022 the well-respected ONS released its COVID-19 Schools Infection Survey which reported that nearly 1 in 50 (1.8%) primary school children (years R-6) and nearly 1 in 20 (4.8%) secondary school children (years 7-13) reported experiencing LC since their most recent infection (48 in a school of 1000). Despite early indications that parents and carers were keen to vaccinate their children only around 11% of school-aged children have received one dose.
The Office For National Statistics Long Covid Data
In the UK we have also had the benefit from the robust and world-renowned ONS prevalence estimates. Data for the four weeks to the 1st of October 2022 versus the previous 4-week period is shown below:
87 000 children are living with Long Covid
78 000 for more than 3 months
30 000 for at least a year
A summary graph of the long-term symptom data published by the Office for National Statistics since data collection began in February 2021
This graph shows the number of children complaining of ongoing symptoms since their Covid-19 infection split into two age ranges and lengths of time (12 months, 3 months, any duration more than 4 weeks).
Long Covid Kids CEO and Founder, Sammie McFarland, said:
"If we take the lowest estimate for Long Covid of just 1%,
at least 5, 320 children in the UK in January 2022 alone will suffer persisting symptoms. The mechanism of what is causing them and their long-term consequences remain unclear"
26th January 2022
What Do We Know About Child Covid-19 Hospital Admissions?
Child covid hospital admissions are on the rise. This should alert caution not least because SARS2 is a disease affecting endothelium potentially impacting recovery. Children are not small adults. They have different immune systems, and their bodies are designed for growth.
Government research shows us that 80% of admissions in the first two waves of the pandemic, including the Alpha variant, were directly due to Covid-19 and 60% of those have no underlying conditions
Paediatric Covid19 Deaths
"COVID-19 now annually kills more children than other vaccines preventable diseases - including measles, mumps, rubella, and varicella. Apart from this it also causes long-term multi-system disease and Long Covid in children, increasing the risk of diabetes, clotting conditions, and kidney and lung disease. The consequences on children have been huge- with >15,000 children estimated to have been orphaned. I can't think of any infectious disease in children with a similar impact"
Dr Deepti Gurdasani, October 2022. Long Covid Kids Champion
Children & young people rarely die of anything, but Covid is a significant cause of death for CYP. ONS lists Covid as the 5th highest cause of death for females aged 5-19 and there have been more child Covid-19 deaths during the Delta & Omicron waves
150 child covid deaths have been confirmed and registered in the UK by the Office for National Statistics. These children would have died some time ago since child deaths are typically subject to a coroner’s inquiry and that takes time.
It is estimated that over 180 child covid deaths occurred up to mid-September following a positive Covid-19 test (UKHSA, 28 days, 0-19 years)
For context, an average of 18 children per year die from flu (ONS Nomis age 0-19 to 2020). We vaccinate children against the flu.
(Underlying conditions - 86 deaths aged 0-19 in the 12 months to July 2022, involved covid. Of which 62 had covid as the underlying cause = 72.1%)
Number of child COVID-19 deaths per week
since records began up until November 2022. England and Wales only
Misinformation: "Only 6 healthy children have died from Covid19"
A fact-check published in the BMJ explains the misrepresentation of data published in mainstream news under the title “Only 6 healthy children” have died from Covid-19.
An article led by Dr Tom Lawton looks at the issue in detail, with input from three of our Long Covid Kids experts, Dr Deepti Gurdasani, Dr Stephen Griffin and LCK Consultant Data Analyst, James Neill.
What Constitutes an 'Underlying Medical Condition' in the Data?
We often hear data reported with the caveat that the children had “underlying conditions”. But what constitutes an underlying condition?
The ‘pre-existing conditions’ category includes chronic conditions that would rarely cause death on their own, such as;
Any mental health diagnosis
Common conditions that can range from trivial to severely life-limiting
An ‘other’ label that appears to be any condition (e.g. eczema)
For context, UK data shows us that:
1 in 11 children is living with asthma. The UK has one of the highest prevalence, emergency admission and death rates for childhood asthma in Europe
36 000 children are living with diabetes
1 in 100 children has been diagnosed with autistic spectrum disorder
20% of children are living with eczema
Long Covid Kids consider the life, health and wellbeing of all children as of equal value.
COVID-19 and Child Mental Health
Orphanhood
Loss of a caregiver is associated with a risk of lifelong adversity. The infographic below taken from the Imperial College London Covid-19 Orphanhood calculator estimates that 18 600 children in the UK have lost a primary or secondary caregiver.
"Dr Juliette Unwin, lead author, from Imperial’s School of Public Health, said: “Sadly, as high as our estimates of orphanhood and caregiver deaths are, they are likely to be underestimates, and we expect these numbers to grow as more global data on COVID-19 deaths becomes available".
Dr Susan Hills, said “We estimate that for every person reported to have died as a result of the Covid-19 pandemic, one child is left orphaned or loses a caregiver"
Further, current data combined with future pandemic mental health data analysis should consider what is known about the links between depression, anxiety and some viral infections. Certain types of viral infections are associated with an increase in the prevalence of depression relative to the general population.
Further, Official Clinical Commissioning Group data from NHS Digital (England) currently shows that the increase in the number of under 18's being referred to mental health services is sadly part of a long-term trend but not directly attributable to the current pandemic. While headlines circulate regarding increases in antidepressant use in youths its prudent to note that this is also part of a long-term trend.
MHS32a Referrals (ages 0-18) to June 2022
Child suicide, per quatre, England
Data from the ONS shows: "no evidence suicides increased during the COVID-19 pandemic"
Celebrating Resilience
Finally, there is a tendency for some groups and sections of the media to focus on the negative effect partial school closures had on some children's mental health. We hear little of the remarkable resilience that children showed or the wealth of research shining light on the vast numbers of children simply thriving. While it is indisputable that some children and families suffered adverse effects from partial school closures, in this section our charity will showcase balance, brilliance and the resolve of the youth of today.
"Overall, however, the data collated in the report shows a positive picture of the experiences of most children and young people during the time period covered, given the unprecedented challenges faced."
Section 2
Recommended Reading
Asian Journal of Psychiatry. 2021.
Dr Nisreen Alwan MBE
Data Sources and Contact Details
Data Analysis, Charts and Statistics:
Long Covid Kids Consultant Data Analyst
Article Compilation:
Long Covid Kids Founding Member, Development & Strategy Lead
Admissions
Cases
Deaths
Contact Us
Data for Ireland, Scotland and Wales is not easily accessible or simply unavailable. Please contact Long Covid Kids with any queries or UK/ROI data to add to our article.
About
In 2021 Long Covid Kids became the first UK-based, international registered charity advocating for families, children and young people living with Long Covid.
The charity focuses on recognition, support and recovery and has already received recognition from the NHS and the Centre for Disease Control in the USA, as well as being a recommended resource in the NICE Long Covid guidelines.
Our Mission
Purpose
We believe all children should be able to thrive and look forward to a positive future. That is why we represent and support children and young people living with Long Covid and related illnesses and the parents and caregivers that look after them.
Our Vision
To achieve recognition, support and recovery for Long Covid and related illnesses in children and young people
Support Our Work
While children are living with life-changing symptoms and families struggle to seek support, we need to be here. Your donation will be used directly to support families living with Long Covid. Find out more about our Impact.
