The UK Covid Inquiry
This page outlines Long Covid Kids’ involvement in the UK COVID-19 inquiry, sharing how we’ve represented children, young people, and families affected by Long Covid and related conditions at a national level in the UK.
Why the UK COVID-19 Inquiry Matters
The UK COVID-19 Inquiry was established to examine the UK’s preparedness for and response to the pandemic and to learn lessons for the future. It covers a wide range of areas, including healthcare, education, inequalities, and the impact on children and young people.
Long Covid Kids committed to supporting the inquiry from the outset, to ensure that the experiences of children and young people impacted by SARS-CoV-2 infection, and living with Long Covid, are recognised and considered as part of this national investigation.
Our evidence draws on the lived experiences of our team, our members and wider community to highlight how children, young people and their families have been affected, and what needs to change now, and for the future.
Our Role as a Core Participants
Long Covid Kids is proud to have been recognised as a core participant in the UK COVID Inquiry.
We contributed by ensuring that the experiences of children and young people with Long Covid, and their families, were represented at the highest level.
As the only UK charity dedicated to children and young people with Long Covid, we brought forward evidence and insights rooted in lived experience to help shape the Inquiry’s understanding of how the pandemic affected health, education, relationships, and emotional wellbeing.
Long Covid Kids was granted Core Participant status for three modules of the UK COVID Inquiry:
Module 2
Core UK decision-making and political governance.
Opened August 2022.
Module 3
Impact of COVID-19 pandemic on healthcare systems in the 4 nations of the UK.
Opened November 2022.
Module 8
Children and Young People.
Opened May 2024.
Further Information
We contributed as part of the Long Covid Groups, working alongside Long Covid charities and organisations to highlight the experiences of people living with Long Covid and the systemic challenges they face.
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Long Covid Support
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Long Covid
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Long Covid Physio
Ondine Sherwood, Co-Founder, Long Covid SOS gave oral evidence on behalf of the group in Module 2.
Natalie Rodgers, Trustee, Long Covid Support gave oral evidence on behalf of the group in Module 3.
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We participated independently, bringing forward evidence and insights uniquely focused on children and young people.
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Sammie McFarland, Founder & CEO, Long Covid Kids & Helen Goss, Long Covid Kids Scotland, provided written evidence.
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Sammie McFarland, will give oral evidence on behalf of Long Covid Kids.
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In the UK COVID Inquiry, some people and organisations are given the special status of core participant.
This means they are recognised as having a direct and important role in what the Inquiry is investigating. Core participants might be individuals, charities, or groups who represent people affected.
Being a core participant gives them certain rights, such as:
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See evidence before it is made public,
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Submit written and oral (spoken) evidence,
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Suggest questions for the Inquiry to ask witnesses,
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Make formal statements,
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Attend hearings and take part in discussions,
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Have their lawyers represent them during hearings,
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Influence how the Inquiry engages with children and young people,
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And ensure that families affected by Long Covid are meaningfully represented.
A core participant is someone the Inquiry listens to closely, because their experience and perspective are essential for finding the truth and making recommendations. Core participants play an important role to help shape the inquiry.
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The Pandemic Impact on Children and Young People
Click the images to view the summaries.
Full Report.
Our Evidence and Insights
During the course of the inquiry, we submitted a series of evidence-based reports, combining first-hand accounts from our team, case studies from families, and research conducted with our wider membership.
These submissions focus on key areas such as healthcare, education, access, caregiving, stigma, barriers, financial impact, mental health, and the challenges of navigating support systems.
Downloads or Links:
We are committed to ensuring that the voices of children, young people, and families are heard at the highest level.
Below, you can view the public list of witness statements, evidence and associated documents we have submitted to the Inquiry. Alongside this, Long Covid Kids has worked closely with the Inquiry’s Engagement Team, contributing to the Every Story Matters process and supporting the Children’s Voices Project, so that lived experience directly shapes the Inquiry’s understanding and recommendations.
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DfE Misinformaion Document - INQ000542722 – Paper from the Department for Education titled What we know about Post-acute/Long COVID and how it could impact educational and children’s social care settings, dated 05/05/2021.
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Dr Ladhani - "any incident of unwell will be blamed on covid and children should not be labelled with Long Covid" INQ000542824 – Minutes of the Permanent Secretary Stakeholder Group Meeting, regarding update on scientific data, vaccination progress, NHS pressures and systems of control and paths ahead for education and care, dated 9 June.
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Viner email on PIMs and public confidence in schools INQ000069216 – Email chain between Chris Whitty (CMO), Jeremy Farrar (Wellcome Trust) and other colleagues regarding Paediatric Multisystem Inflammatory Syndrome (PIMS), dated 12/05/2020.
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Content Warning: The following video contains themes of bereavement, Long Covid and child illness.
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Module 8 - coming soon
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Little Comfort This work explores some of the emotions and experiences associated with Long Covid. It is an expression of the abandonment and displacement experienced by so many, and an attempt to communicate this through gestures and marks while still retaining a subtle sense of hope. It is one artist’s interpretation of the subject and not a universal representation of this complex and debilitating condition.
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Created by Daniel Freaker, following conversations with members of Long Covid SOS, Long Covid Support, Long Covid Kids and Long Covid Nurses and Midwives.
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Scottish COVID-19 Inquiry's Health and Social Care Impact Hearings
Helen Goss
Impact hearing - Health and social care
23 May 2024
Our Involvement
Amanda Jelley
Impact hearing - Health and social care
22 May 2024
Our Involvement
Helen Goss
Impact hearing - Health and social care
2 November 2023
Our Goals
We want the Inquiry to:
Recognise
that Long Covid in children is real, serious, and ongoing.
Aknowledge Harm
including the impact of repeated infection, lack of protection, and inadequate healthcare and education support.
Ensure Representation
that the most severly affected children, often too unwell to give evidence themselves, are not forgotten
Drive Change
so that lessons are learned and acted upon, ensuring better protection for children now, and in any future public health crisis.
Jane Ryan
Our Legal Team
Long Covid Kids is represented by a specialist public‑law team led by Jane Ryan of Bhatt Murphy Solicitors.
Counsel support was first provided by Anthony Metzer KC of Goldsmith Chambers and later headed by Sarah Hannett KC, of Matric Chambers with additional expertise from Sangeetha Lengar of Garden Court Chambers and Shanthi Sivakumaran of Doughty Street Chambers.
Together, this team provides extensive experience in health, policy, and public‑inquiry work.