'Children who have become ill with Covid and not recovered need to be made a priority'

What will your webinar cover?

This webinar will raise awareness of Long Covid in children, providing practitioners with an overview of this phenomenon – what we know so far and what we don’t, what may support people (and what really won’t!). It will provide some examples of real-life situations and feedback from the lived experience of members of LongCovidKids. It will briefly touch on the need for practitioners to be client centred and validate the lived experiences and knowledge of the families, with care taken not to reduce the condition.

How did you first become interested in this area?

My family became ill with Covid at the very start of the pandemic, and my children and I did not make a full recovery. Having relied on online support groups to help make sense of my condition, I formed a campaign group called LongCovidSOS to raise awareness of the condition. However, I quickly realised that children were not being considered in this, so wrote a blog piece for the BMJ entitled ‘Counting Long Covid in Children’, which led me to join forces with another mother – Sammie McFarland – to start the support and advocacy organisation to LongCovidKids. LongCovidKids provides a website with comprehensive information on Long Covid in children, as well as a Facebook group in which parents and carers can share their experiences and be supported by others in the group. We are currently applying for charity status in order to gain funding to be able to provide more social support for the children and their families. Since we launched LongCovidKids we have supported over 3000 families internationally and campaigned to raise awareness through research and the media. 

What still needs to change in this area?

Although Long Covid is now being recognised as a condition that affects children, it is still not widely known about and is not being factored into decisions around children and education. The prevalence is still unclear, as there is still insufficient rigorous research into this phenomenon. Families are finding it difficult to access good support – both medical and social – and many feel that their concerns are being invalidated by professionals. There is a real need for better referral pathways for these young people that are based on a clear understanding of the condition and how best to support them with all the factors involved, physical, emotional, and psychological.

Could you tell us something that might surprise someone not familiar with this area of work?

The effect of having a child that is chronically unwell, with a condition that is little known and has no treatments or cure, is anxiety-inducing for the child as well as the wider family, and this is compounded by the sense of not being supported or even believed in some cases. Psychologists can play an important role in supporting these children and their families, but they must be prepared to understand the condition and validate their clients in living with the many unknowns of Long Covid in children.

What is the main message you hope people will take away from the webinar?

In the words of Nelson Mandela: “There can be no keener revelation of a society's soul than the way in which it treats its children". This generation of children have been affected by the pandemic in many ways, but children who have become ill with Covid and not recovered – whose lives are now blighted by a range of symptoms that can be incredibly debilitating – need to be made a priority. Their families need to be provided with respectful, validating support that will help them to live with the many unknowns that surround this condition, and it is for all of us to invest time to learn as much as we can about the condition in order to provide that support.

- Fran Simpson’s webinar is on Thursday 28 October from 12pm to 2pm – find more information and book.