Blog

We are pleased to welcome and introduce members of our growing trustee team, bringing together expertise across education, governance, research, safeguarding, operations, children’s rights and social impact.

A Covid infection in the middle of my studies and suddenly life is turned upside down. Difficulty concentrating, headaches, extreme fatigue. Diagnosis: Long Covid. How to manage law studies despite restrictions with the help of disadvantage compensation is explained by Sophie Aylin Keller as a victim.

An exhibition of art and photographs exploring life before and after Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome, Fibromyalgia and Long Covid.

At Long Covid Kids, everything we do begins with one simple belief: every child deserves to thrive and look forward to a bright, positive future.

Long Covid Kids attends PoTS conference in London.

Over recent months, Long Covid Kids has contributed to the Department for Education consultation on proposed updates to the statutory guidance Supporting pupils with medical conditions at school. This work aimed to ensure that the experiences of children, young people and families living with Long Covid and overlapping illnesses meaningfully informed the consultation process and were represented throughout.

“Attendance pressure created a PEM boom–bust cycle, worsening health and preventing GCSE access.” — Parent contributor. This briefing summarises the key themes and recommendations raised through member participation and lived experience during the consultation process. Our findings reflect the experiences of children and young people living with Long Covid and overlapping illness, while also highlighting wider systemic issues affecting children.

he session focused on answering questions submitted by families in advance and helping parents feel more confident navigating what can often be a complex and challenging system. By the end of the discussion, many parents reported feeling better informed, more empowered, and reassured that they are not facing this journey alone.

The Long Covid groups are now calling on the Government and devolved administrations to urgently address the ongoing failures in care. They warn that Long Covid remains a significant public health challenge, affecting millions today with new cases emerging with each new wave.

Long Covid Kids, Long Covid SOS, Long Covid Physio and Long Covid Support issue their core demands ahead of the release of the UK Covid-19 Inquiry’s Module 3 landmark report today, 19th March.

The Covid Made Long project is a research partnership led by the London School of Hygiene & Tropical Medicine (LSHTM), in collaboration with Long Covid Kids, Imperial College, Long Covid Support, and Positive Negatives. At its heart, this project has always been about making sure that the voices of young people with lived experience of Long Covid are not just heard, but truly centred.

Over 1,000 messages sent to UK politicians. Our campaign “Invisible to Policy, Visible in Children’s Lives” is gathering momentum. 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. If you haven’t yet taken part, you can join the "Invisible to Policy, Visible in Children’s Lives" campaign here.