The All-Party Parliamentary Group (APPG) Meeting on Paediatric Long Covid | A Young Person’s Account
- Long Covid Kids
- 5 minutes ago
- 5 min read
All-Party Parliamentary Groups (APPG's) play an important role in today's democratic process. Long Covid Kids wanted to be a part of the APPG on Long Covid in order to tell your story, my story and the stories of over 11,000 families that we've supported over the last 6 years.
The APPG session on the 24th June 2026 focused solely on the experiences of children and young people living with Long Covid. We brought together young people’s testimony, clinical expertise and evidence gathered through six years of supporting families.
This blog highlights the stories at the forefront of the meeting, the work of the Long Covid Kids team, and our key asks/recommendations for the future.
What is an APPG on Long Covid and why does it matter?
All-Party Parliamentary Groups (APPGs) are informal cross-party groups which have no official status within Parliament. APPGs matter as they provide a neutral forum to debate ideas and launch research. In addition to this, they allow politicians to meet with outside experts and charities who share an interest in the cause. The APPG on Long Covid is chaired by Jo Platt MP, who helped provide the opportunity for children and young people’s experiences to be heard.
Long Covid Kids were fortunate to be joined at this meeting by Consultant Adolescent Paediatrician Dr Terry Segal. Dr Segal sought to highlight the significant unmet need, inequalities in specialist service provision and the importance of sustaining expertise for children and young people living with Long Covid and post-infectious conditions.
Long Covid Kids, bringing young people’s experiences into Parliament
Throughout the meeting, we sought to emphasise the long-lasting consequences of prolonged illness and how it can affect every area of day-to-day life. This includes education, social participation, future opportunities and life chances.
These consequences were reflected in the words of Kitty McFarland, Youth Advisor, Advocacy & Communications Support who attended the meeting:
“I wanted Parliament to understand what it has been like growing up with Long Covid, but I also wanted to represent the many children and young people who couldn’t be there. We deserve to be heard. Just because tests don’t always show what’s wrong doesn’t mean we aren’t ill. When our health, education and everyday lives are clearly being affected, we need people to listen and support us. I’ve grown up with Long Covid, and no young person should have to wait that long to be recognised or receive the support they need.”
“It shouldn’t take 6 years to get listened to for the first time”.
Kitty went on to share the impact Long Covid can have on children and young people’s everyday lives, including the lack of accessible education and employment opportunities and the isolation that can come with prolonged illness. For some young people, social media may be one of the only ways they are able to maintain friendships and create connections.
There was opportunity to read anonymous testimony shared by children and young people, these are shown below:
“We can’t fend for ourselves and have to rely on other people to do the things we can’t until we are older.” Young person with lived experience
“I would like parliament members to listen and fight for health support, research and no judgement from society.” - Age 16, Kent
“People will believe it is a medical condition that requires treatment … so I am not written off and my life taken away from me before it has even had a chance to start.” - Age 19, living with Long Covid since 2020
Health, education and everyday life
Many key themes were discussed throughout the meeting with an emphasis placed on the impact on health, education and everyday life.
Recent education data shows that more than 170,000 children in England are now severely absent from school, while Bright Futures UK estimates that approximately 279,000 children and young people across the UK are currently out of education due to prolonged illness.
It was important for us to stress that children and young people living with Long Covid form a part of this wider picture of educational exclusion associated with prolonged illness.
Young people and families played a vital role in shaping the meeting. Families consistently tell us that Long Covid affects every aspect of a child’s life. The challenges they describe extend far beyond healthcare alone and include:
Difficulty accessing appropriate support.
Variation in services and expertise.
Pressure to maintain attendance despite illness.
Challenges accessing appropriate adjustments on a long-term basis.
Missing friendships, activities and milestones.
Social isolation and loss of independence.
Moving between paediatric and adult services.
Barriers across school, college, university and employment.
From experience to policy
Good policy cannot be created if policy makers aren’t provided with good information. We sought to use this meeting to stress the importance of improved data collection, sustained specialist expertise and greater opportunities for children and young people to contribute directly to policy discussions which affect their lives.
Better data is needed to ensure that government guidance, briefing materials and information shared with decision-makers reflect current evidence, current service provision and lived experience, supporting better decision-making and more effective policy development.
When children disappear from the data, they risk disappearing from policy discussions too.
What needs to happen next?
This meeting was an important opportunity to lay the groundwork for further discussion and future policy development.
We concluded by setting out four key asks and recommendations:
Create ongoing opportunities for children and young people living with Long Covid and overlapping illnesses to be heard directly by policymakers.
Develop sustainable specialist health and education pathways for children and young people with complex, energy-limiting and fluctuating illnesses, ensuring equitable access regardless of diagnosis, geography or socioeconomic background, while retaining existing specialist expertise.
Improve data collection and ensure that government guidance, briefing materials and information shared with decision-makers reflect current evidence, current service provision and lived experience.
Enable access to appropriate support regardless of diagnosis, geography, socioeconomic background, ethnicity, sex, gender or level of disability.
These asks and recommendations are centred around one key message:
“Childhood doesn’t pause while a child waits to recover.”
Please swipe along to see our full APPG presentation below:
Why this matters to me
As a young person who was diagnosed with Long Covid aged 16 and who, at 21, continues to live with ongoing symptoms, it is particularly important to me that our voices are heard by those who have the power to influence change.
At this meeting, Kitty was able to give a voice to children and young people like us who could not be present but deserve to be heard.
I hope those who attended will take on board not only the messages shared during the meeting, but also hear the collective voice of children and young people and help us move forward.
We cannot do this without them.
Written by Bethan, Youth Advisor, Communications Support
