CHILDREN’S CHARITIES ANNOUNCE SUCCESSFUL APPEAL
CHILDREN AND YOUNG PEOPLE WITH LONG COVID
GRANTED CORE PARTICIPANT STATUS IN MODULE 8 OF COVID 19 INQUIRY
Long Covid Kids and Long Covid Kids Scotland have been granted Core Participant status in Module 8 of the Covid-19 Inquiry investigating the impact of the pandemic on children and young people.
This follows a shocking provisional decision on 9 July 2024 to refuse their first application for Core Participant status in the Covid-19 Inquiry. The Chair Lady Hallett granted the charities an opportunity to make a renewed application which was submitted on 16 July 2024.
The renewed application to the Chair was supported by an Open Letter endorsed by charities, politicians, clinicians and NHS paediatric post-Covid leads. Following publication, the letter was further supported by nearly 1000 members of the public within 48 hours, who stood in solidarity with children and young people who have suffered substantial impairment and harm to their health following SARS-CoV-2 infection.
Long Covid Kids and Long Covid Kids Scotland directly represent approximately 11,000 children and families suffering from Long Covid. Children and young people with Long Covid have experienced the dual burden of the social and educational disruptions, including the loss of learning during the pandemic that all children have experienced, as well as the long-term injury to their health.
It is incredibly welcome that Lady Hallett has recognised the importance of the effective representation of children and young people with unique experiences, perspectives, and insights so that changes can be made to protect all children. It is hoped that the children’s module will make specific recommendations relating to disease transmission, with a particular focus on considering long-term risks from Covid-19 and ensuring children and young people are included in all aspects of pandemic preparedness and decision-making.
QUOTES
Sammie McFarland, CEO & Founder, Long Covid Kids
"The voices of children and young people with Long Covid have been largely absent from conversations throughout the pandemic, allowing opportunity for misinformation, adding to their burden of stigma. I am relieved and thankful that Baroness Hallett recognised the 1 importance of giving these doubly affected young individuals the opportunity for effective representation in Module 8 through Long Covid Kids, Bhatt Murphy and our legal team. We can do better for young people with Long Covid"
Dr Jeremy Rossman, Chair, Long Covid Kids
“We welcome the news that children and young people with Long Covid will now have their voices heard at the Covid Inquiry Module 8. However, it is still concerning that it required petitioning to get their voices heard on the module that specifically pertains to them. We hope that moving forward, we are able to work constructively together to ensure that the Inquiry has an accurate assessment of how the pandemic impacted children and young people so that they can receive the accountability and political change they so desperately need."
Margaret O’Hara, Trustee, Long Covid Support
“Long Covid Support are very pleased to see that Long Covid Kids are core participants in Module 8 of the Covid Inquiry. The lives of children and young people with Long Covid, and their parents, have been devastated by the condition. It would be unthinkable for the Inquiry to not hear directly from the people who have been so badly affected. Long Covid Kids does an invaluable job of supporting them and giving them a voice.”
Sonya Chowdhury, Chief Executive, Action for M.E.
“Ensuring the voice of children and young people in the inquiry is critical. Action for ME welcomes the decision to involve Long Covid Kids to represent those that have been doubly affected by Long Covid and Covid-19 to ensure needs are better met in the future.”
Professor Stephen Griffin, School of Medicine, University of Leeds
“Throughout the pandemic, children and their families affected by SARS-COV-2 infection have been overlooked because of a flawed narrative whereby kids are somehow exempt from harm. This applies to acute disease, but also to Long Covid. Long Covid Kids has been a beacon of support for so many families since 2020. Many of the volunteers have direct experience of children afflicted by this devastating condition, giving their time in abundance. It has been a pleasure to have played a small part supporting them, and it's only right that they are a clear voice throughout the Covid inquiry.”
Notes to editors
The latest ONS statistics (released on 25 April 2024, relating to a period from November 2023 to March 2024) show that there are currently an estimated 55,801 children in England 2 and Scotland (defined as 3 to 17 years old by ONS) who have Long Covid and have had symptoms persisting for at least 12 weeks.*
“Long Covid in Children and Young People (CYP) Education Experiences and Attendance Survey” was submitted evidence to Department of Education’s Inquiry into School Attendance (2023) 2 . The survey found that a child with Long Covid will lose an average of 20.6 learning hours per week. 40.2% of respondents thought that the school lacked an understanding of the impact that Long Covid has had on their child or young person’s education. 81% of CYP did not require support with their learning before COVID-19, since covid 59% need support most or all of the time.
The Inquiry’s report from Module 1, in which the Long Covid Groups were refused core participant status did not specifically refer to preparedness for long term sequelae of infection despite this being foreseeable from previous coronaviruses and nor did it refer to Long Covid, chronic illness and impairment as a consequence of Covid-19*. There are no recommendations made relating to the need to prepare for the consequence of long term illness caused by disease. It is essential given the vast and growing numbers of people with Long Covid that core participation is granted to the Long Covid Groups in all relevant modules of the Inquiry.
Even considering the high variability in estimated prevalence rates, the large number of covid-19 infections in children and adolescents means that large numbers will also develop Long Covid, many with debilitating symptoms with undetermined duration.
References
https://www.longcovidkids.org/post/how-does-long-covid-impact-attendance-and-educational-experiences
Further information
For further information please contact: Anthony Burr, anthony@burrmedia.co.uk / +44 7766 459469, smcfarland@longcovidkids.org or hgoss@longcovidkids.org
Ends.
Our Mission
We believe all children should be able to thrive and look forward to a positive future
The charity focuses on raising awareness of how Long Covid presents in children and young people and we do this by co-producing quality research with leading Long Covid researchers. We support children, young people and their families through, peer to peer and expert knowledge sharing, and through active representation at meetings with key stakeholders including those in government, healthcare and education.
We work collaboratively with other charities and services supporting children and young people with conditions associated with Long Covid or Post Viral Illness. We strongly believe that this inquiry can capitalise on lessons learned from Long Covid but also by comparison with past experiences of other post viral illness. It’s time to make sure we approach any future pandemics from a standpoint of awareness of and knowledge of how to prevent and treat post viral illness.
Our Added Value
Being party to the thousands of stories of day to day life living with Long Covid, and combining this with the empathy of having a Lived Experience led team means that we know what is important to children, young people and their families. We also hear what worked well, and conversely what didn’t in terms of the government, healthcare and education response to the acute pandemic. More importantly we can also represent experiences and insights of the here and now.
We conducted key surveys with the University of Derby on the experiences of Healthcare and Education that meant that we were able to share this with key representatives from these areas in order to address challenges and inequities, as well as sharing experiences of good practice.
https://www.longcovidkids.org/post/how-does-long-covid-impact-attendance-and-educational-experiences
Having children and families willing to contribute to the resources we develop such as our award winning support guide and the educational toolkit video series means that the voices of lived experience bring to life how small changes in attitude and practice can have an immeasurable effect on the lives of those living with Long Covid.
Our Youth Advisory Panel is an opportunity for young people to contribute to developing opportunities for peer support and giving vital input and insight to researchers who work with the charity. We have been so impressed with how much these young people are willing to give of themselves in order to raise awareness - and more importantly with the aims of preventing their peers having to experience the challenges they have faced.
You can read more about our work in the first annual review
About the Children We Represent
Long Covid is a unique experience for each individual child or young person. We acknowledge and represent that difference in our advocacy and campaigning, seeking to ensure that those who struggle to be heard are. We share stories of hope and recovery as well as those that represent the very real and sometimes devastating effects that Long Covid have on families.
Ella’s school didn’t understand how severe an impact Long Covid was having until she received the support from Long Covid services (services that Long Covid Kids was involved in campaigning for in the early stages of the pandemic). https://www.longcovidkids.org/post/ella-it-s-all-in-her-mind-long-covid-kids-real-life-stories
Simon’s family perfectly express the caution with which families now approach ‘good days’ because of the fluctuating nature of the condition.
Read other real life stories - https://www.longcovidkids.org/real-life-stories
