Invisible to Policy, Visible in Children’s Lives | Long Covid Kids | March 2026
- Long Covid Kids
- 10 hours ago
- 3 min read
Over 1,000 messages sent to UK politicians. Our campaign “Invisible to Policy, Visible in Children’s Lives” is gathering momentum.
Our campaign “Invisible to Policy, Visible in Children’s Lives” is gathering momentum.
Over 1,000 people across the UK have now written to their elected representatives, calling for greater recognition of Long Covid in children and young people. Families, clinicians, educators and supporters are coming together to make sure that children affected by Long Covid are not overlooked in policy, services and data.
The campaign asks policymakers across Westminster, Holyrood, the Senedd and Stormont to recognise the impact of Long Covid on children's health, education and future opportunities.
For many children living with Long Covid, everyday activities, including attending school, can become extremely difficult due to debilitating fatigue, loss of mobility, cognitive difficulties and fluctuating health. Yet too often their experiences remain invisible in the systems designed to support them.
At the same time, the issue is beginning to gain attention in Parliament. Recently, Oxford East MP Anneliese Dodds asked what assessment has been made of the impact of Long Covid on young people who are not in education, employment or training.
This growing conversation shows why it is so important that the voices of families and children are heard.
Every message sent to an elected representative helps ensure that policymakers understand the reality children are living with, and the need for recognition, research, and appropriate support.
Children who are unwell today need supportive policy now, and future children will too.
If you haven’t yet taken part, you can join the campaign to improve policy for children with Long Covid here:
Families, educators, clinicians and anyone who cares about children’s wellbeing are encouraged to take part and share the campaign.
The numbers with these post-infectious chronic illnesses has jumped from 250,000 to 1.35 million since Covid. Tessa Munt MP said;
“current estimates of the cost are upwards of £22 billion per year. Compared with other health conditions, that’s huge."
Help us keep the pressure on
Campaigning, policy work and awareness do not happen by accident.
They happen because supporters like you make them possible.
If you believe children cannot afford another year of inaction, please consider making a donation today, or becoming a regular supporter so we can sustain this fight for the long term.
Long Covid Kids, the first and longest-serving charity dedicated to raising awareness of Long Covid in children, says the response demonstrates growing concern among families and clinicians that children with the condition are still not adequately reflected in policy, data and support services.
A spokesperson for Long Covid Kids said:
"Children and young people living with Long Covid are too often missing from the data and from policy conversations, despite the very real impact the condition has on their lives. This campaign shows the strength of feeling across the UK that children must not be overlooked."
One parent supporter said:
“The government claims to want to get children back to school and adults back to work but is failing to consider the health impacts of the pandemic. I had to give up work to care full time for my son who is bedbound with Long Covid and M.E. and unable to access education or home healthcare. Germany is apparently investing €500 million in research but the UK is closing all the long covid services and our children remain largely unsupported and invisible!”
Learn more about Young People with Long Covid :
COVID Made Long
A dedicated group of peer collaborators and young people have been working alongside researchers to share their experiences, shape the direction of the project, and co-produce three resources that we are incredibly excited to now share with the world.
Three New Resources
Co-produced by young people affected by Long Covid.
A 3 part graphic series called ‘Long Covid Lives’ which highlights a range of experiences based on the lives of young people and their families living with Long Covid.
Long Covid: A Young Person’s Guide, which is an illustrated guide with practical information, case studies and tips and tricks about navigating Long Covid.
Living with Long Covid: A Young Person’s Glossary which helps to explain any medical terms used in the other resources. These are accompanied by descriptions from young people experiencing these symptoms.
Long Covid Kids and Friends is a UK-wide community representing children, young people and families affected by Long Covid and overlapping illnesses, including ME, PoTS, PANS and MCAS. We support 11,000 families whose children and young adults experience prolonged, fluctuating and often disabling symptoms following COVID-19 infection.
We are members of the Health Conditions In Schools Alliance and Overlapping Illness Alliance.
To read further blogs and information visit out website.
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