Navigating without a map: the impact of Long Covid on children, young people and their families

Helen Goss reflects on the difficulties of accessing support for children and young people with Long Covid.

“Childhood is the best of all the seasons of life, and the longer it lasts with happy memories, the stronger the emotional stability in adulthood.” (Venugopal Acharya)

In Scotland, we have set ourselves the ambition of getting it right for every child, and we are working hard to embed the UN Convention on the Rights of the Child into day-to-day life. We want the best for Scotland’s children. We want them to be happy and healthy, to thrive and succeed in whatever path they choose. We want to support them to overcome the challenges and adversities they face. When they cry, we comfort them. When they get sick, we do our best to provide treatments and services to help them recover.

But imagine taking a child to the doctors because they are in pain, experiencing fatigue so severe that their body and brain feel like wading through treacle, suffering nausea, and they are unable to learn due to cognitive impairment, only to be told, “we don’t know anything yet” or “I can’t understand why they’re still like this”. This is the reality for some families who are finding out that, as with adults, for children and young people the impact of a COVID-19 infection doesn’t always end when their isolation period does.

We are only starting to see what lies ahead for children and young people infected by SARS-CoV-2 and to understand the damage that it can cause to young bodies. How many children will be affected by Long Covid is not yet known. Current prevalence estimates vary between 1% and 51%. We do not yet know what the impact of reinfections will be.  We do not yet know if, like Polio, further problems may occur in years to come. There is still much we need to learn, and the World Health Organisation has identified it as an area for priority research.

My own daughter first had COVID-19 in March 2020. Since then, we have been desperately trying to navigate a strained health and social care system not equipped to deal with the complex presentation of symptoms that can arise in children after a COVID-19 infection. In July 2021, we contracted Covid-19 for a second time, which knocked her recovery back to square one. Currently, she is so unwell that she has not had any formal education since September 2021 and my now 9-year-old, who was previously fit and healthy, requires the support of a wheelchair on the rare occasion we are able to leave the house.

It’s now been 23 months since she first became ill and yet, it was only 2 weeks ago that the diagnoses of Long Covid and Paediatric Acute-Onset Neuropsychiatric Syndrome (PANS) triggered by COVID-19 infection were officially confirmed. We had to fight hard to get a diagnosis and we have struggled to access the support we need. Waiting lists are long, staff are overstretched and the nature of her illness can make it difficult to attend scheduled appointments outside the house. Although her school has been exceptionally supportive and the digital technology now exists to support online learning, the Local Authority are unable to offer home tutoring provision. In order to ensure her right to education is met, we have resorted to paying for independent provision. Many families would not be able to take on this additional financial strain.

With no clear map, we have had no choice but to keep trudging forward, seeking answers ourselves whilst the media, and even some medical professionals, downplay and minimise the risk of COVID-19 to children and young people, often bypassing the topic of paediatric Long Covid entirely. It’s been a frustrating, exhausting, and arduous journey which, at times, has tested our resilience as individuals and as a family.

We are a family in crisis, and yet, our situation is by no means unique – we are just one family out of tens of thousands of families in the UK struggling to navigate the reality of caring for a child or young person with new chronic illness and varying degrees of disability. The most recent Office for National Statistics (ONS) estimates suggest that 117,000 children and young people in the UK are suffering from Long Covid (this link will take you away from our website). This is likely a conservative figure as the recent preliminary data from the world’s largest study into Paediatric Long Covid, the CLoCK Study led by UCL and Public Health England (this link will take you away from our website) suggests that up to 1 in 7 (14%) of children who are infected by SARS-CoV-2 will go on to develop Long Covid. COVID-19 is not a low risk disease for many and Long Covid is not a benign condition.

For the parent of a child or young person with Long Covid, the future can be a painful contemplation whilst we wait for the research to catch up with our lived experience. Will they recover? Will they be able to play with friends again? Will they manage to sit school exams? Is this their life now? Who can help us? What could I be doing to make this better? As we find ourselves in unchartered territory, the obstacles and challenges that families have to face are numerous and unrelenting.

I discovered Long Covid Kids Support Group in January 2021 during one of many desperate Google searches looking for answers as to why my child was still so very unwell. Whilst my family’s experience has presented us with monumental challenges, untold stress, and moments of utter defeat with ugly crying on the bathroom floor, I am strengthened and bolstered by the incredible Long Covid Kids team around me.

In June 2021 I took on the role of Long Covid Kids Lead Representative for Scotland and am now working with others to improve awareness and understanding of the impact that COVID-19 can have on children, young people and families, to ensure their rights are upheld and that children, young people and their families receive the support and services they so desperately need.

Long Covid Kids work with multi-disciplinary teams to help them gather better research data to increase scientific knowledge and understanding of the effect that Covid-19 infection is having on children and young people. The knowledge and experience of the 7000+ members in our peer support group is helping to shine a light for other families who follow behind, who are now also finding themselves lost in the fog, searching for services and support. Our support groups offer a safe, welcoming space for families to come together to share experiences of what may work to aid recovery, to discuss issues and challenges and to explore ideas for overcoming these. Increasingly, we are also responding to queries from professionals who are working with children, young people and families. They too are struggling to find answers. More and more professionals across health, social care and education are keen to learn about this illness and to better understand the challenges that children, young people and their families are facing in order to improve their own practice and be able to provide better support to those they are working with.

The route ahead for children and young people with Long Covid is unclear but we are determined to find answers and a way through this together.  If “living with Covid” is to be inclusive, we must ensure these children and young people are not left behind and that their rights are upheld. We also need to take more preventative action to stop children falling in to the icy Long Covid waters in the first place. This means making use of evidence-based public health measures and addressing the issue of unclean air so that our environments are safer for everyone. Whilst the last two years have felt long, we know we are still only near the start of the Long Covid expedition. As time goes on, we will discover and learn more, and we must not stop until every family and every child has the care and support they need.

“Childhoods never last. But everyone deserves one.” (Wendy Dale)

For more information on Long Covid Kids, and the support they offer, visit the following sites:

Long Covid Kids Website (this link will take you away from our website)

Facebook Support Group (this link will take you away from our website)

Facebook Scotland Support Group (this link will take you away from our website)

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