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Long Covid Kids Rebuttal Letter to U.K Prime Minister

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.



Blog Contents




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,


Yours sincerely

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

  • PoTS UK


Individuals

  • 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.








 


About

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.



Our Mission


Purpose
  • 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.


Our Vision
  • 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.








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