Long Covid in Children: New Practical Guide to Education and Printable Poster
What does good educational support look like when a child is living with a prolonged, fluctuating and energy-limiting health condition?
This month marks six years since Long Covid Kids began, and five years since we became a registered charity.
Those six years have been shaped by listening and learning. From children and young people, families, research, professional expertise, and increasingly from communities and organisations working across overlapping illnesses.
Today, we’re marking that anniversary by launching Long Covid in Children: A Practical Guide to Education.
The guide brings together evidence, lived experience and practical guidance to help education professionals translate understanding into meaningful support for children and young people living with Long Covid.
This free resource is designed to help education professionals understand and support children and young people with Long Covid, including how health can affect access to learning, participation and school life.
The guide focuses on Long Covid. Many of its principles may also be relevant to children and young people living with overlapping prolonged, fluctuating and energy-limiting health conditions. This includes children and young people living with Myalgic Encephalomyelitis (ME) and other conditions where symptoms, energy limitations and the impact of activity can affect access to education and participation.
A child may be able to attend or learn some days but not others. They may appear well in school but experience significant symptoms afterwards. They may manage something once but be unable to repeat or sustain it.
Sitting upright, travelling to school, concentrating, processing information, navigating a busy sensory environment or spending time with friends can all place demands on a child whose energy or functional capacity is limited.
Crucially, the full impact may not be visible at the time.
That is the reality this guide has been designed around.
A new resource, from understanding to practical support
Families have told us repeatedly how difficult it can be to explain a prolonged, fluctuating and often invisible illness across education, health and other systems.
Our new guide brings together evidence, lived experience and practical guidance to help education professionals understand what Long Covid can mean for the child in front of them and what they can practically do to help.
It explores the impact of Post-Exertional Malaise (PEM), also described as Post-Exertional Symptom Exacerbation (PESE), and translates that understanding into practical support for the individual child.
Access to education is not the same as physical presence
Access to education is not the same as physical presence in the school building.
Support may involve adjustments in school, flexible, remote or alternative ways of participating, and recognising that at times a child may be too unwell to engage at all.
Support should reduce demands, not simply help a child tolerate them.
That means listening to the child and family and considering whether participation is manageable and sustainable, including its impact beyond the school day.
A resource designed to be used and shared: free poster included
The guide is designed for busy education professionals, with clear key messages and practical adjustments that can be considered around the individual child. It can also be used by young people and their families as a self advocacy tool.
It includes a standalone poster, Key Messages for Professionals: Long Covid in Children: A Practical Guide to Education, to print or share in education settings, with a QR code linking directly to further information and resources.
We hope this helps the guidance reach beyond the person who first downloads it.
Developed with lived experience and professional expertise
The guide has been produced and funded by Long Covid Kids, drawing on the lived experiences of children, young people and families, alongside research, clinical guidance and professional expertise.
It is supported by the International Post Covid & Post Infection Conditions Society (IPIC), with thanks for input from the UCLH Post Covid team and the Treatment and Rehabilitation of Adolescents and Children with Complex Conditions Service (TRACCS) team.
We are grateful to the organisations and individuals who contributed their time and expertise to reviewing the guide.
Reviewing organisations included BACME (British Association of Clinicians in ME/CFS), COVID Long Enfants, Kinderen Met LongCovid, Long Covid UK, The Long Covid Clinic, Long Covid Physio, Mast Cell Action, PANS PANDAS UK, PoTS UK, SAPHNA (School and Public Health Nurses Association), the Temerty Faculty of Medicine at the University of Toronto, and the Rehabilitation Science Research Network for COVID.
We are also grateful to the young people whose lived experience helped inform its development, and the independent review panel;
Dr Danilo Buonsenso, Claire Daniel, Dr Jo Greer, Cath Kitchen OBE, Steve Lowe, Dr Nigel Speight.
Part of a growing resource suite
The Education Guide is the first in our new Long Covid in Children practical resource suite, with further resources for families, healthcare professionals, educational psychologists and others supporting children and young people coming soon.
We’re sharing each resource as it becomes ready, rather than waiting for the full suite to be complete, because children and families need practical support now.
Childhood doesn’t wait.
You can find all downloadable resources on our website.
Keeping the child at the centre
Education matters enormously, but it sits within a child’s wider life. Children also need friendships, family life, interests, rest, connection and the ordinary experiences of childhood.
A child who cannot attend in the usual way has not stopped wanting to learn, belong or be part of their school community.
We hope this guide helps more children and young people access education in ways that recognise their health, respond to their individual needs and make meaningful participation possible.
Download Long Covid in Children: A Practical Guide to Education
Every child deserves a childhood they can participate in.
