Updated: Nov 20, 2022
Signed by 140 professionals including paediatricians, scientists, virologists, medics, charities, organisations, children living with Long Covid and their parents.
In reply to a disappointing response from the Prime Minister’s office, Long Covid Kids has published an open letter summarising their concerns regarding the current state of government support for children and young people living with Long Covid in the U.K.
Open Letter to The Prime Minister
Signatures in Support of Open Letter
Download your free copy of the Support Guide we delivered to No 10 Downing Street.
Dear Prime Minister
Open Letter to Boris Johnson
Thank you for your email dated 1st June 2022.
On the 1st of April, twelve children living with Long Covid travelled to No. 10 to deliver an account of their experiences. Each child represented 10,000 young people in this country who have been seriously impacted by the condition, and they had come from every corner of the UK with letters describing the toll this illness has taken on their lives.
The visit was planned in coordination with staff at Downing Street, and the children were assured that their letters would be received by you personally.
Several of these children have been disabled by a ‘mild’ SARS-CoV-2 infection, to the extent that they must now use wheelchairs, but for everyone involved, the visit to Downing Street required significant effort. Their journey was fuelled by hearts full of hope and resolve for a brighter future. Their accompanying parents and siblings have become carers whilst these children now observe life rather than participate.
Our charity supports all children who suffer ongoing harm from SARS-CoV-2 infection and their carers, as detailed in our new Support Guide which outlines the currently proposed mechanisms for Long Covid, the differences between COVID-19 and flu, and the challenges and impacts faced by those who we support. This Support Guide was also hand-delivered to your offices.
Post-exertional symptom exacerbation, or PESE, is common in those living with Long Covid. This means that activity can cause a worsening of symptoms. Many of these children spent days recovering from the physical efforts required to make that journey yet chose to participate because it gave them hope. The suffering of children with Long Covid has been routinely ignored, and they were eager to bring their personal stories to your attention in the belief that their voices would make a difference.
We were therefore deeply shocked and upset by the response to their letters from the Department of Health and Social Care, writing on your behalf. Instead of any recognition of the children’s experiences, or the work of our charity led by volunteers, we received what appeared to be a standard letter on the impact of Covid-19 on children’s mental health.
Youth mental health is a serious issue, and we are glad that the government is taking steps to address it. However, it is entirely unrelated to the mechanisms of Long Covid. Long Covid symptoms are the result of a pathophysiological disease process triggered by SARS-CoV-2 infection. It can cause significant and measurable damage to the body, including the lungs, muscles, and cardiovascular system. Tens of thousands of previously healthy children are now living with symptoms that profoundly impact their quality of life, and 26,000 of them have experienced symptoms for more than a year. It is insulting in the extreme that accounts of this illness have been met with a description of improved access to psychological therapies, helplines, and treatment for eating disorders.
The content of the DHSC’s letter suggests that the children’s messages were not read and that the government believes Long Covid is primarily a question of mental health. This apparent lack of awareness of the medical facts is profoundly troubling and highlights the degree to which this illness has been misunderstood, and why it was necessary for us to hand-deliver our Support Guide and the children’s letters to Downing Street.
We remain committed to improving the health and learning outcomes of children and young people and trust that this letter - and the letters delivered on the 1st of April - will receive an appropriate reply.
We would also welcome the opportunity to meet you and your advisors in person and to introduce you to the medical and academic experts who support Long Covid Kids.
On behalf of the ten thousand children, parents and carers that we represent,
Sammie McFarland CEO and Founder
Long Covid Kids
Signed in support by
Children who visited London and wrote letters to the Prime Minister
Kitty McFarland Age 16 living with Long Covid since March 2020
Jacob Parish Age 11 living with Long Covid since March 2021
Victoria Priest Age 12 living with Long Covid since July 2021
Jasmin Kane Age 11 living with Long Covid since January 2021
Eva Peters Age 16 living with Long Covid since January 2021
Emily Saville Age 10 living with Long Covid since September 2021
Lilianna Jackson Age 17 living with Long Covid since September 2020
Corbin Whapshott Age 16 living with Long Covid since November 2020
Eva Whapshott Age 14 living with Long Covid since September 2020
Anna Hendy Age 9 living with Long Covid since March 2020
Charities & Organisations
Long Covid SOS
Long Covid Support
Long COVID Physio
Occupational Therapy For Long Covid
Patient Safety Learning
Clinically Vulnerable Families
Pans Pandas UK
PIMS-TS UK Community
Dr Charles Shepherd, Honorary Medical Advisor to the ME Association.
Dr Nigel Speight, Hon Paediatric Medical Adviser, ME Association.
Dr Terry Segal, Consultant Paediatrician, Clinical Lead adolescent specialities UCLH, Co-Lead Pan London Post COVID-19 Service
Dr Daniel Munblit MD MSc PhD, Honorary Senior Lecturer, Inflammation, Repair and Development Section, The National Heart and Lung Institute, Imperial College London
Dr Danilo Buonsenso Paediatrician Dept of Woman and Child Health and Public Health Rome
Professor Daniel Altmann, Professor of Immunology
Dr Louise Sigfrid, MD, PhD, FFPH, Clinic research fellow, Public Health Specialist, Epidemic disease & Long Covid researcher, Centre for Tropical Medicine and Global Health, University of Oxford, Oxford, UK
Dr Elisa Perego MA PhD, Honorary Research Fellow, University College London, person living with Long Covid, Long Covid researcher and advocate, and Long Covid Kids Champion
Dr Stephen Griffin MA, PhD. Associate Professor of Viral Oncology & Long Covid Kids Champion
Professor Amitava Banerjee, Professor of Clinical Data Science and Consultant Cardiologist, UCL & Trustee, Long Covid SOS
Dr Binita Kane, Consultant Respiratory Physician, Manchester University & Long Covid Kids Champion
Dr Rae Duncan Consultant Cardiologist, Long Covid Cardiovascular Consultant and LC Researcher & Long Covid Kids Champion
Dr Deepti Gurdasani Clinical Epidemiologist and Statistical Geneticist & Long Covid Kids Champion
Dr Nathalie MacDermott PhD MRCPCH, NIHR Clinical Lecturer King's College London & & Long Covid Kids Champion
Dr David Strain Senior Clinical Lecturer and Honorary Consultant NHS and Long Covid Kids Champion
Dr Susannah Thompson GP with Long Covid, former NHSE. PPV for Long Covid and Long Covid Kids Champion
Clare Rayner Long Covid Kids Champion and Consultant Physician in Occupational Medicine
Dr Asad Khan FRCP FRACP Consultant Respiratory Physician, Manchester. Long Covid sufferer & Long Covid Kids Champion
Dr Tom Lawton MBE, Consultant Critical Care
Dr Janet Scott BMBCh (Oxon) PhD MRCP (UK) DipRCPath Clinical Lecturer in Infectious Disease. Medical Research Council - University of Glasgow Centre for Virus Research
Dr Lesley Kavi Visiting Professor Birmingham City University RCGP Syncope Clinical Champion Trustee and Chair, PoTS UK
Dr Joe Pajak, CSci, NHS Foundation Trust Governor & parent of Long Covid sufferer
Dr Alison Twycross RN, Chair of Long Covid Nurses and Midwives UK & Editor-in-Chief Evidence-Based Nursing
Dr Teresa Kelly, Consultant Obstetrician, Manchester
Dr Lucy Cheke, Associate Professor, University of Cambridge
Dr Shaun Peter Qureshi, Specialist Registrar in Palliative Medicine
Dr Ian Jackson, Clinical Safety Officer
Dr Sterghios A Moschos FIBMS, FRSC, FHEA, MRSB, Associate Professor of Cellular and Molecular Sciences, Northumbria University
Dr Kelly Fearnley, Foundation Doctor, Bradford Royal Infirmary
Leslie Channon MA, CIHCM - Former PPV4 NHSE LongCovid TaskForce
Dr Daniel Goyal, Consultant Physician, NHS Scotland
Dr Katherine McConkey MBChB MRCGP General Practitioner
Dr Claire Taylor, GP Partner with a special interest in Long Covid
Professor Peter Boyle, Physics, University of Edinburgh
Mr Darren Brown MCSP BSc MSc MRes Chair Long COVID Physio
Ondine Sherwood, Co-founder Long Covid SOS - Former PPV4 NHSE LongCovid TaskForce
Damon Broad, Chair of Trustees, Long Covid SOS
Sandra Edwards, Co-founder Long Covid SOS
Helen Lunt Davis, Long Covid SOS team member
Claire Hastie, Founding Member, Long Covid Support
Nathalie Pearson Founding Member of LCK and Chief Operations Officer
Dr Sue Peters, Educational Psychologist and Education Lead LCK
Kirsty Stanley Occupational Therapist & Health Lead LCK
Helen Goss Senior Lead Representative for Long Covid Kids, Scotland
Sarah Priest Lead LCK Support Service Moderator
James Neill Long Covid Kids Consultant Data Analyst
Kate Davies Lead Representative for Long Covid Kids, Wales
Sarah O’Connell Lead Representative for Long Covid Kids, Republic Of Ireland
Colin Pidgeon Lead Representative for Long Covid Kids, Northern Ireland
Dr Jenny Ceolta-Smith Occupational Therapy for Long Covid
Claire Higham Long Covid Advocacy
Robin Gorna, Former PPV4 NHSE LongCovid TaskForce, trying to recover from Long Covid
Asim Ilyas - Recovering Long Covid & Former PPV4 NHSE LongCovid TaskForce
Davine Forde, trying to live with Long Covid
Victoria Parish Parent of a child living with Long Covid
Louise Saville Parent of a child living with Long Covid
Jo Daniow on behalf of Long Covid Support
Lucy Griffith, Children's Nurse, LCK Moderator
Dr Jo Greer Mum of a child with Long Covid and Educational Psychologist
Nick Greer Dad of a child with Long Covid
Sharon Humphries, Primary School Teacher, LCK Volunteer
Lou Whapshott Parent of two children with Long Covid
Angela Ravenscroft, Parent of a child with Long Covid, LCK volunteer
Harbinder Dhaliwal Parent of a child with Long Covid
David Graham Parent of a child with Long Covid
Ann Boniface Grandmother of a child with Long Covid
Scott McFarland Parent of a child with Long Covid for 27 months
Vicky Collins Parent & carer of a child with long covid
Phil Collins Parent of a child with Long Covid
Juliet Taylor Parent of two children with Long Covid
Shelley Spence Parent of a child with Long Covid
Sharon Oliver Parent of a child with Long Covid
Lucy Smith Parent of a child with Long Covid
Victoria Newton Parent and carer of a child with Long Covid
Emma Chilvers, Parent of a child with Long Covid
Steve Parish Dad of a son with Long Covid
Beverley Allen Grandparent of a child with Long Covid
Joanne Pound Parent of children with Long Covid
Debbie Lightman Parent of child with Long Covid
Rachel Willis Parent and carer of two daughters with Long Covid
Gill Boast Parent of a child with Long Covid
Sophie Morris Parent and carer of a child with Long Covid
Catherine Pereira-Wray Parent of a child with Long Covid
Gary Ralph Parent of a 9-year-old daughter with Long Covid
Yvonne Miller Parent of a child with Long Covid
Karen Martin Parent with Long Covid to a son with Long Covid
Lucy McDonnell Occupational Therapist Mum with Long Covid caring for a son with Long Covid
Hannah Guy Parent of 11-year-old child with Long Covid for 2 years, 2 months
Sarah Macdonald Mum of a daughter with Long Covid
James Macdonald Dad of a daughter with Long Covid
Carrie Gittins Parent of a 9-year-old with Long Covid.
Paul Gittins Parent of a 9-year-old with Long Covid.
Fraser Keep Parent of a child with Long Covid.
Jane Keep Parent of a child with Long covid.
Karen Shaw Parent of a child with Long Covid
Caroline Sharp Parent of child with Long Covid
Jacara Brookes Parent of child with Long Covid
Cathy Pidgeon Parent of a 17-year-old daughter with Long Covid
Philip Bailes Parents of a daughter living with Long Covid.
Paula Bailes Parents of a daughter living with Long Covid
Fardos Parent of two children living with Long Covid
Arran Macmillan Parent of two children living with Long Covid
Ting-Li Su Parent/carer of 11 years old living with Long Covid 12 for months
James Taylor Parent/carer of 11 years old with Long Covid 12 months
Vicky Martin Parent of a 17-year-old daughter with Long Covid for 20 months
Mrs Sharon Harvey Parent of a son with Long Covid
Jana Mikusova Touati Parent of a child with Long Covid 9 months
Leigh-Anne Elmer Parent of a 12-year-old child with Long Covid
Samantha Liebenberg Parents of a 16-year-old son who has been fighting Long Covid since Jan 2021
Mr Rian Liebenberg Parents of a 16-year-old son who has been fighting Long Covid since Jan 2021
Jack Liebenberg Age 16 suffering from Long Covid since Jan 2021
Amanda Jelley Parent of a child living with Long Covid
Ruth Yates Parent of a child living with Long Covid
Lee Botterill Parent of 13-year-old fighting with Long Covid since Dec 2020
J Crouch Parent of a teen who had to do GCSEs with Long Covid
Debbie Joyce Parent of Caspar Joyce with Long Covid for 8 months
Sacha Goring Parent of two children with Long Covid since 2020
Manuelle Nwachukwu Parent of child with Long Covid.
Symona Maciejewski Parent of a 10-year-old son fighting Long Covid since January 2022
Craig Maciejewski Parent of a 10-year-old son fighting Long Covid since January 2022
Dr Amy Boylan Parent of a 10-year-old with Long Covid for 22 months and a 6-year-old with Long Covid for 6 months.
Philippa Nicholson Parent of 15-year-old with Long Covid who had to cancel GCSE
Find out more about our visit to No 10 Downing Street on 1st April 2022 to launch the new Long Covid Kids' Support Guide.
SKY FYI - FYI episode 166 - Shown on SKY news.
In 2021 Long Covid Kids became the first UK-based, international registered charity advocating for families, children and young people living with Long Covid.
The charity focuses on recognition, support and recovery and has already received recognition from the NHS and the Centre for Disease Control in the USA, as well as being a recommended resource in the NICE Long Covid guidelines.
We believe all children should be able to thrive and look forward to a positive future. That is why we represent and support children and young people living with Long Covid and related illnesses and the parents and caregivers that look after them.
To achieve recognition, support and recovery for Long Covid and related illnesses in children and young people
Support Our Work
While children are living with life-changing symptoms and families struggle to seek support, we need to be here. Your donation will be used directly to support families living with Long Covid. Find out more about our Impact.