The UK Covid-19 Inquiry found that Long Covid Kids and Long Covid Scotland had met the legal test of having “significant interest” in the matters being investigated and therefore could be delegated core participants.
However, we are shocked and disappointed to share that, in her discretion, the Chair, Lady Hallett, declined to do so saying that she was confident that the Inquiry would be able to explore the Government’s understanding of the risk that children might acquire Long Covid without their being core participants.
In response to this surprising decision, Long Covid Kids and Long Covid Kids Scotland have written an open letter to the Inquiry, garnering support from over 50 signatories from charities, organisations, clinicians, ministers, and other backers.
Signed by:
Bruce Adamson, Professor of Practice, University of Glasgow’s School of Law, former Children and Young People’s Commissioner Scotland
Professor Danny Altmann, Imperial College London
Dr Theo Anbu, Consultant Paediatrician and Lead for CYP with ME/CFS and Long Covid, AlderHey Children’s NHS Foundation Trust, Liverpool
Dame Jackie Baillie MSP, Scottish Labour’s Health & Social Care Spokesperson, Co-convener of the Scottish Parliamentary Long Covid Cross Party Group
Dr Kezia Barker, School of Biological and Environmental Sciences, Faculty of Science, Liverpool John Moore's University
Baroness Brinton, House of Lords
Dr Josie Briscoe, Faculty of Life Sciences University of Bristol
Joanna Buckmaster, PIMS-TS Family Support Group UK
Danilo Buonsenso, MD, PhD, PGDip & Msc (Oxford), Paediatric Infectious Disease
Vicky Burford, Chair of Trustees, PANS PANDA UK
Eden Byrne, Long Covid Kids Youth Advisory Panel
Harriet Carroll, BA MSc MRes PhD, Long Covid consultant, Long Covid Scientific Consultancy
Sonya Chowdhury, Chief Executive of Action for M.E.
Dr Nicola Clague-Baker, Physios for ME and University of Liverpool
Alex Cole-Hamilton MSP, Leader of Scottish Liberal Democrats, Co-convener of the Scottish Parliamentary Long Covid Cross Party Group
Professor Sheena Cruickshank, University of Manchester
Stephen Crulley (Research Delivery Project Manager) - The Newcastle upon Tyne Hospitals NHS Foundation Trust
Dr Neil Davidson, General Paediatrician and Medical Lead for GNCH Paediatric Fatigue Service, Great North Children's Hospital, Newcastle upon Tyne
Professor John Drury, Professor of Social Psychology, University of Sussex
Professor Edward Duncan, Professor of Applied Health Research and Associate Dean of Research, Faculty of Health Sciences and Sport, University of Sterling
Dr Rae Duncan, Consultant Cardiologist & Long Covid Research/Clinician, Medical Champion, Long Covid Kids, Long Covid Advisory Team, World Health Network
Gareth Evans, Trustee of Long Covid Support
Dr Mark Faghy, Professor in Clinical Exercise Science, University of Derby
Dr Kelly Fearnley, Long Covid researcher and Chair of Long Covid Doctors for Action
Dr Jonathan Fluxman, Covid Lead, Doctors in Unite
Dr Ian Frayling, MA MB BChir PhD FRCPath, Hon.FFPATH (RCPI) FEBLM, Immediate Past – President, Association of Clinical Pathologists, Honourary Consulting Generic Pathologist to St Mark’s Hospital and St Vincent’s Hosptial Dublin, Honorary Senior Clinical Research Fellow, Inherited Tumor Syndromes Research Group, Cardiff University
Dr. Laura Mackinnon, Cambridgeshire University Hospital Trust Paediatric Consultant and (former) East of England Paediatric Post Covid Service Lead.
Professor Naomi Fulop, Professor of Health Care Organisation and Management, Applied Health Research, University College London
Helen Goss, Long Covid Kids Scotland, mother of a child with Long Covid
Professor Trish Greenhalgh, Professor of Primary Care Health Sciences, Oxford University
Professor Stephen Griffin, School of Medicine, University of Leeds
Rachel Hext, RN, Founder - Keyworker Petition Campaign UK.
Professor Catherine Heymans, Astronomer Royal for Scotland, Professor of Astrophysics at the University of Edinburgh, Director of the German Centre for Cosmological Lensing at the Ruhr-University Bochum, Germany.
Katy Hindson, PANS PANDAS UK
Sharon Humphries, Early Years/Primary Teacher and Long Covid Kids Team
Sharon Isaac-Upton, Head of UK Operations - Smart Air
Dr Binita Kane, Consultant Respiratory Physician with a special interest in post-viral illnesses, Manchester University Foundation Trust
Dr Lesley Kavi, Trustee and Chair, PoTS UK
Dr Asad Khan, Consultant in Respiratory Medicine, Manchester Long Covid patient and father of child with Long Covid
Long Covid Physio
Long Covid Scotland
Long Covid Support
Kamran Mallick, CEO, Disability Rights UK
Fulton MacGregor MSP, SNP MSP for Coatbridge and Chryston
Dr Carrie MacKenzie, Consultant Paediatrician and Clinical Lead for ME/CFS and Post Covid Services for Children and Young People at Sheffield Children’s NHS FT
Cass MacDonald, BSc (Hons) MA Gen Former Nurse and Founder of the Key Worker Petition Campain UK
Sammie McFarland, Long Covid Kids, mother of a young person with Long Covid
Associate Professor Helen McLaren, College of Education, Psychology and Social Work, Flinders University
Professor Martin McKee, CBE, MD DSc FMedSCi, Professor of European Health
Professor Susan Michie, Professor of Health Psychology, University College London
Ruairidh Milne, Emeritus Professor of Public Health, University of Southampton
Dr Pooja Mishra, General Practitioner
Dr Pauline Nolan, Head of Leadership & Civic Participation, Inclusion Scotland
Mike Omerod, Actionable Insight, Financial & Economic Impact Lead, Long Covid Support, living with Long Covid since September 2020
Dr Morwenna Opie-Morgan, Consultant Clinical Psychologist
Professor Christina Pagel, University College London
Councillor Oliver Patrick, Somerset Council
Elisa Perego MA PhD, University College London
Dr Sue Peters, Educational Psychologist and Education Lead, LCK
Professor Ann Phoenix, Professor of Psychosocial Studies, University College London
Amy Proal, PhD, President/Chief Scientific Officer PolyBio Research Foundation
Dr Clare Rayner, Long Covid Kids Champion and Society of Occupational Medicine, Long Covid Taskforce
Professor Stephen Reicher, FBA, FRSE, FAcSS, FBPS, Wardlaw Professor of Psychology University of St Andrews
Professor Tim Rhodes, London School of Hygiene and Tropical Medicine
Dr Jeremy Rossman, Honorary Senior Lecturer in Virology, Chair Long Covid Kids
Dr Helen Salisbury, GP and Medical Educator
Professor Pam Sammons, Professor of Education at the Department of Education, University of Oxford, Senior Research Fellow at Jesus College, Oxford
Monica Samuel, Physiotherapist, TRACCS & Post COVID, UCLH
Scottish Healthcare Workers Coalition
Professor Nick Sculthorpe, Professor of Clinical Exercise Physiology, School of Health and Life Sciences, University of the West of Scotland
Dr Terry Segal, Consultant General and adolescent paediatrician, University College London Hospitals, Clinical Lead adolescent specialist services, Clinical Lead Pan Children and Young people’s London Post COVID service, North Thames Paediatric Network Transition
Dr. James Sessford, University of Toronto
Dr Charles Shepherd, Hon Medical Adviser - ME Association
Ondine Sherwood, Long Covid SOS
Smart Air UK
Chloe Smerklo, Board Trustee, PoTS UK
Polina Sparks, Employment Rights Advocate, Long Covid Support parent of a young person with Long Covid
Kirsty Stanley, Occupational Therapist, Health Lead for Long Covid Kids
Professor David Strain, University of Exeter Medical School
Dr Claire Taylor, MBChB, RCGP (2017), BSc Neuroscience (Hons), Expert advisor on Long Covid to World Health Network
Dr Gilles Thoni PhD, APA & Covid19, Long covid, PEM & Pacing
Nuala Toman, Disability Action Northern Ireland
Richard Tozer, Consultant Paediatrician, South West Regional lead for Paediatric post-COVID service
Valerie van Mulukom BA, MPhil, PhD, Senior Lecturer in Psychology, Department of Psychology, Health and Professional Development, Oxford Brookes University
Dr Emma Weisblatt, Consultant in Development Neuropsychiatry
Sharon White OBE, CEO, School and Public Health Nurse Association
Dr Cervantée Wild, University of Oxford
Dr Sally Witcher OBE FRSA, Founder and Director Inclusive New Normal
Dr Kit Yates, Director of the Centre for Mathematical Biology at the University of Bath
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Our open letter to the Inquiry.
CHILDREN AND YOUNG PEOPLE WITH LONG COVID DISMAYED THAT UK C-19 INQUIRY REFUSES TO RECOGNISE THEM IN CHILDREN AND YOUNG PEOPLE’S MODULE
The Chair of the Covid 19 Inquiry has indicated that she intends to refuse the application of Long Covid Kids (‘LCK’) and Long Covid Kids Scotland (‘LCKS’) to be core participants in Module 8 of the Covid19 Inquiry investigating the impact of the pandemic on children and young people.
The charities directly represent approximately 11,000 children and families suffering from Long Covid. The decision means that they are closed out of the Inquiry process: they will not have the right to review relevant documents, ask questions of witnesses or make submissions in an opening and closing statement to the Inquiry. This is the only module dedicated to investigating the impact of the pandemic on children and young people and yet children and young people with Long Covid will not be represented.
Children and young people with Long Covid suffered the dual burden of the social, education disruptions and loss of learning that all children suffered as well as long-term injury to their health. For many children and young people with Long Covid those impacts persist to date, resulting in chronic illness, substantial and long term impairment.
It is essential that their voices and experiences are represented at the Inquiry. Their status as core participants will ensure that the Inquiry fully understands the perspective of children and young people with Long Covid in the course of the investigations in Module 8. If the Inquiry proceeds without LCK and LCKS present, there is a clear risk that the impact of Long Covid on children and young people will not be properly and fully explored.
Their members are now calling for the Inquiry to review this decision.
Parents and Carers of Children and Young People with Long Covid
Diane Fisher, Parent of a child with Long Covid
“LCK has fought for us since 2020, they understand the struggles experienced by children suffering with long covid, and their families, better than any other organisation. They stand out as a beacon of hope, support and information in an otherwise disappointing and distressing quagmire of gaslighting, denial and ignorance from medical, educational and political bodies. They will know the right questions to ask to help the inquiry understand how our children have been so badly let down.”
Becky O’Connor, Parent of a child with Long Covid
“My 12-year old son has been diagnosed with long covid this year, after an infection in March 2024, long after the Government decided the risk had passed. His sporty, academic and sociable life has been turned upside down in a matter of months. This is a direct result of public health policy failure. In being denied a core role in this Inquiry, it feels as though the experience of my child, and countless others who have been and will continue to be affected by repeated and avoidable failures, does not matter."
Kerry Simpson, Parent of a child with Long Covid
“This inquiry was our opportunity to have our and our children’s voices heard, acknowledged and hopefully used to learn lessons for the future. With LCK being the primary portal to convey so many of our voices, their being denied a vital role in the inquiry, is appalling! What message does this send my child about how much her life, her voice and her well-being matters”
Katie Antill, Parent of a child with Long Covid
“My son has had long covid for two and a half years, getting Covid just two months after starting secondary school. I would like to tell his story and ask questions to the Inquiry as I feel he and others like him are being completely forgotten about. The education and health system is ignoring their needs. Their futures are being written off and politicians and policy makers just don’t seem to care.”
Leila, Parent of a child with Long Covid
“So much of the current focus and rhetoric is on the way that lockdowns affected children. What about the children who have been harmed by the virus itself? Don’t the children who are still suffering from debilitating Long Covid symptoms deserve to be heard? To be given the opportunity to ask questions about why schools were not made safer by proven measures such as air filters? To ask why punitive Department of Education attendance policies encourage the continued spread of Covid in schools, whilst continuing to punish those who are already sick? These children’s lives have shrunk. My 14 year old watches his friends play sport, socialise, go to school, do Duke of Edinburgh and wonders when he will be well enough to ‘get back to normal’. I would like to know the date that Eton installed its HEPA filters.”
Anonymous, Parent of a child with Long Covid
“My daughter believes that she has been forgotten by society, every reinfection is debilitating, she doesn’t want to live anymore as she doesn’t believe anything will change. We keep reminding her that the Inquiry is listening and will make recommendations, that there is hope for her future. Long Covid Kids are her voice. What do I tell her now?”
Simon Craner, Parent of a child with Long Covid
“The children most affected by Long Covid (aside from those that have tragically died) are those now tens of thousands disabled by Long Covid. My own child has been disabled by Long Covid for several years and may remain so after several school caught reinfections. Not representing the children most harmed by the virus is an appalling disservice to them and adds to the growing impression that the children disabled with Long Covid are being intentionally ignored. Long Covid Kids charity is a lifeline for these children and they must not be excluded from the Inquiry.”
Children and Young People with Long Covid
EB, age 16
“It's like everyone's talking about the grown-ups who got sick, but what about us? We got sick too, and sometimes it feels like it's never going away. The grown-ups are talking about what happened with Covid, but they're not asking us how it feels. Is that fair? The Long Covid Kids charity is like our team, fighting so we can be heard. They should be part of the inquiry too, so everyone knows what it's like for kids like me."
TS, age 11
“I was sent in to school two years ago when covid was going through my class because I was told that children didn’t get that ill from covid but I got very ill. I was in lots of pain but some of the doctors I saw told my mum and dad that I was making it up and made me walk but I couldn’t even stand up. I haven’t been to school for two years. I can’t do all the things I did before like playing football and I have lost my friends. I don’t think it’s fair that children won’t get the chance to ask about what covid has done to them. It makes me feel angry and invisible and like I don’t matter.”
Kitty McFarland, age 18
“Long Covid Kids and Long Covid Kids Scotland are the only charities supporting kids with Long Covid. The fact that they have been turned down after everything they have done for us is astonishing. No-one else is going to be able to speak with lived experience from our perspective which is the whole point of the Inquiry isn’t it? No-one else is going to be able to relay what we have gone through, no-one else has listened.”
S, age 14
“Long Covid was preventable, Long Covid ruined my life, Long Covid stole my childhood.”
Sammie McFarland of Long Covid Kids and Helen Goss of Long Covid Kids Scotland said:
“We are profoundly disappointed by our provisional exclusion from the Children and Young People module of the UK Covid Inquiry, especially after being emailed directly by the Inquiry about applying. Our distress is compounded by the recognition of Long Covid Kids in Scotland as a Core Participant in the Education and Impact on Children and Young People module, highlighting the disparity in acknowledgment of our important contribution.Children and young people with Long Covid have been consistently ignored, dismissed, and forgotten since the pandemic began. Excluding their voices sends a troubling message that their experiences are not valued by the Inquiry, echoing the UK government's disregard throughout this crisis.The devastating learning loss due to debilitating post-viral illness should be addressed in a module focused on children and education. Our exclusion is a disservice to all children with Long Covid whose lives have substantially impacted; their voices deserve to be heard. It is crucial for the Inquiry to make recommendations that will better safeguard children in future public health crises. We believe this is impossible until the Inquiry demonstrates an understanding of the impact of Long Covid on children and families. We have supported the Inquiry in good faith and are disappointed that our legal team will not have the opportunity to raise important questions on behalf of children injured by COVID.”
Jane Ryan, Solicitor, Bhatt Murphy said:
“The approach of the Inquiry demonstrates that it does not understand and cannot possibly ask the right questions on behalf of children and young people with Long Covid. Up till now the Inquiry has consistently sought my clients’ input into matters relating to children and young people recognising their unique experience and role. I am puzzled that at this final and vital stage for children and young people with Long Covid the Inquiry has chosen to close the process to them, shut the door and deny them the special rights core participants have. If this decision stands it is shameful. I urge the Inquiry to listen to the concerns of parents, children and young people with Long Covid and grant their application.”
Background
The charities have engaged with the Inquiry since 2022 including:
Providing witness statements
Meeting with the Inquiry team
Providing support and attending Every Story Matters events
Sharing the Inquiry’s work with members and supporters
Participating in impact films
Being members of the Children and Young People’s forum
Being core participants in the Scottish Covid Inquiry, Module 2 and Module 3 of the UK Inquiry.
On 21 May 2024, the Inquiry emailed Long Covid Kids directly about applying for Module 8.
On 17 June 2024, they submitted their application.
On 9 July 2024, the Inquiry found that the charities had met the legal test of having “significant interest” in the matters being investigated and therefore could be delegated core participants but in her discretion the Chair, Lady Hallett, declined to do so saying that she was confident that the Inquiry would be able to explore the Government’s understanding of the risk that children might acquire Long Covid without their being core participants.
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 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 as evidence to the Department of Education’s Inquiry into School Attendance (2023). 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-19 59% need support most or all of the time.
Further information
Long Covid Kids and Long Covid Kids Scotland’s original application with supporting evidence is available here. A renewed application will be filed with the Inquiry next week.
For further information please contact: Anthony Burr, anthony@burrmedia.co.uk / +447766459469, smcfarland@longcovidkids.org or hgoss@longcovidkids.org
