Long Covid Kids

⚠️ This article in The Guardian highlights a tragic story that underlines the importance of listening to parents and carers. Though it’s a difficult read, there’s a powerful message here. https://lnkd.in/eM3ZnSHf Parents and carers know their children best. They can often spot subtle signs that may go unnoticed by others—things only a parent would sense. As Dr Ron Daniels BEM, CEO of The UK Sepsis Trust, explains, children sometimes hide symptoms differently from adults, meaning their illness might not be recognised until later stages. That’s why it’s so essential to take families’ concerns seriously. Raising concerns about your child’s health is an act of love and advocacy. If you’re worried, speak up and keep seeking the support you need. The introduction of #MarthasRule across hospitals in England is a positive step, but there’s still more work to be done to ensure that families have the right to request a review when something doesn’t feel right. Patient led organisations, including Long Covid Kids support this need, reminding us that every concern matters. Let’s remember: It’s okay to seek reassurance and medical attention. No one knows your child like you do, and your voice can be vital in their care journey. As part of our commitment to children and young people, we are calling for the UK Covid-19 Inquiry to ensure that any future pandemic recommendations recognise, accept, and consider the weight of patient evidence for any emerging health condition. Let’s work together to ensure that every voice is heard and every child receives the attention they deserve. #PatientAdvocacy #ParentsKnowBest #MarthasRule #LongCovidKids #ListenToFamilies #LongCovid #LongCovidKids #PatientSafety #Patients #ChronicIllness #CovidInquiry

📢 New Book Release! 📢 We’re excited to share a new publication by a close friend and advocate of our community. This heartfelt book explores the author’s journey into the world of Long Covid—a complex and still-misunderstood condition that has deeply impacted millions globally. Danilo Buonsenso shares his personal and professional experiences, and sheds light on the challenges, moments of isolation, and incredible resilience involved in piecing together this medical puzzle. This book promises to be an insightful read for healthcare workers, families, friends, teachers, and anyone interested in understanding what lies behind the name “Long Covid” and how it might transform our view on infectious diseases. Special sections also discuss work with children and young adults facing this challenge. 🌱✨ If you pick up a copy, we’d love to hear your thoughts on the book! Your insights and perspectives are invaluable in fostering a better understanding of this journey and its impact. 📖💬 Available on Amazon. https://a.co/d/h5TzKQN Stay tuned—the Spanish edition will be available soon! 💫  #LongCovidAwareness #BookRelease #InvisibleIllness #LongCovidKids #Children #ChildHealth #Paediatrics #Childhood #Kids

It’s wonderful to see Eden Byrne shortlisted for Volunteer of the Year. Good luck to everyone shortlisted. Thank you for all your #volunteering work.

For children and young people with Long Covid, returning to school often means not returning at all. Our thanks to Nicole Karlis for highlighting this fact. At Long Covid Kids , we continue to hear heartbreaking stories like Fergus Robertson's—facing prolonged illness after contracting COVID-19 and struggling to rejoin the classroom. Fergus, like many others, is homeschooled due to the lack of safety measures in schools, which continue to put vulnerable kids at risk of repeat infections. Further, without proper ventilation, air purifiers, or masking policies to reduce the risk of infection and reinfection, families feel abandoned. Sammie McFarland, CEO LCK, stresses that educators' understanding of Long Covid is crucial. Children dealing with this illness are not only suffering physically but also emotionally, feeling isolated from their friends and missing the joy of school life. The current education system is not designed to support them, and as a result, many children are falling through the cracks. It’s time for change. Schools must adopt flexible and hybrid learning opportunities, like those shared in our FREE training and solutions videos to ensure children with Long COVID are still connected to their classmates, and offer the accommodations they need to thrive. https://lnkd.in/eQhH6YAZ We owe it to these children, and all children to make schools safe and inclusive spaces for everyone. 🧡 Support us in raising awareness, advocating for better education policies, and providing crucial resources for families. Together, we can ensure that children with Long Covid are not left behind. Visit https://lnkd.in/dYAv2fGj to learn more and donate today. #LongCovidKids #BackToSchool #LongCovid #Education #ChildrensHealth #Inclusion #SupportLCK Read the article in here. https://lnkd.in/ezJ_QHNi

Mark reminds us that individuals had different experiences during the early stages of the pandemic. Please take a moment to share your experience with the UK Covid-19 Inquiry by taking part in Every Story Matters. https://lnkd.in/eMVZjPNq #LongCovid #Teachers #Education #Children #History #Experiences

Can you help the UK Covid-19 Inquiry document and understand the pandemic experiences of young people? If you know a young person who is now over the age of 18, who was under the age of 18 during the earlier part of the pandemic, please share this information with them. #LongCovidKids #LongCovid #CovidInquiry Long Covid Support Action for ME PANS PANDAS UK PoTS UK

We’re excited to highlight the incredible and creative ways our amazing community contributes to Long Covid Kids. Following the triumphs of The Big Push and The Big Push 2, Libby is gearing up for another challenge on September 28, 2024. She will be asking people to push her the length of a marathon around Worcester to raise crucial awareness and funds for Long Covid Kids. As Libby puts it, LCK "offers vital support for children and their families navigating the complexities of Long Covid." Join us in supporting Libby and help LCK support the children and families who need us. https://lnkd.in/etWcPbkN? #FundraisingFriday #LongCovid #Charity #Worcester #TheBigPush3

⚠️It has been a difficult day of listening at the UK Covid-19 Inquiry today. Module 3, UK COVID Inquiry, 26th Sept 2024 On the topic of risk, Chief Medical Officer, Prof Sir Chris Whitty spoke about the risks that became apparent during the pandemic. He reflected on the initial data that suggested children were relatively unaffected compared to adults: "The bit we were a bit more cautious about saying, but fortunately did prove to be the case, was the other end of the age scale where initial data suggested that children were relatively unaffected, in contrast to something like pandemic influenza, which would definitely hit children as well, particularly the youngest children. That did fortunately prove to be the case. That doesn't mean there weren't children who became very sick acutely, chronically, and some tragically died, but it was a much lower risk in that group." While the acute risk to children was lower than adults, it’s important to remember that children were not completely spared from the long-term impact of the virus. Children should not be compared to adults, the experiences and challenges they face are unique. Long Covid continues to affect more than 100,000 children and young people (ONS Data from England & Scotland). Symptoms can severely impact their quality of life, education, and overall well-being. We encourage everyone to share their experiences with the Inquiry through the Every Story Matters project. The Inquiry is keen to hear from young people who were below the age of 18 during the early pandemic but have since turned 18. Your stories and voices matter, and this is a critical opportunity to ensure they are heard. 👇🏽👇🏾👇🏻 https://lnkd.in/eMVZjPNq The experiences of children and young people with Long Covid are a reminder that COVID continues to have lasting effects on all age groups, and the need for ongoing support and research remains critical. #COVID19Inquiry #LongCovid #PublicHealth #ChildrenAndCovid #PandemicImpact #CovidInquiry #LongCovidKids Watch the full hearing on YouTube in comments below.

Today at the UK Covid-19 Inquiry – 24th September 2024 Shanthi Sivakumaran of Doughty Street Chambers questioned Prof. Sir Michael McBride, Chief Medical Officer for Northern Ireland, regarding the care provided for children and young people with Long Covid in Northern Ireland. In his response, Prof. McBride emphasised that paediatricians are the recognised experts in child health. However, we are deeply concerned that no paediatric experts have been appointed to provide their critical insights on Long Covid in children. Long Covid Kids strongly believes that the inquiry cannot be truly comprehensive without expert paediatric testimony. We hope the inquiry will address this gap in Module 8, the Children’s Module, and seek this essential expert input. This is a vital step to ensure the needs of young people affected by Long Covid are properly understood and addressed. #CovidInquiry #Paediatrics #LongCovidKids #ChildHealth #PublicHealth

This looks amazing and thank you to everyone involved. Your support means everything to us. #longcovidkids #fundraising #charityoftheyear