Long Covid in Children: New Healthcare Guide, 8 Consultation Prompts and Printable Think CHILD Poster
Long Covid Kids & Friends is pleased to launch Long Covid in Children: A Practical Guide for Healthcare Professionals, a free resource supporting child-centred care for children and young people with Long Covid.
Long Covid can affect multiple body systems, fluctuate over time and significantly affect a child's development, functioning and participation in everyday life.
While 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, including Myalgic Encephalomyelitis (ME). Children with these conditions may experience similar symptoms, fluctuating capacity and difficulties accessing appropriate healthcare and support, regardless of diagnosis or whether a previous COVID-19 infection was identified.
The impact of these illnesses may not be apparent during a healthcare appointment. A child may appear well or manage an examination, conversation or activity, but experience significant symptoms or deterioration afterwards.
Our new guide brings together clinical evidence, professional expertise and lived experience to help healthcare professionals recognise and understand children's needs and provide appropriate care and support.
When a child may have Long Covid, Think CHILD
At the heart of the guide is Think CHILD, a practical clinical prompt for recognition, assessment and support:
C · Consider Long Covid
H · Hear the child and family
I · Investigate appropriately
L · Look beyond the appointment
D · Do what helps now
CHILD encourages healthcare professionals to recognise changes in a child's health and functioning, listen to children and families, investigate appropriately and look beyond what is visible during an appointment.
It also reinforces that appropriate care and support can begin while assessment or investigation is ongoing.
The Think CHILD poster is available as a standalone printable resource for consultations, clinical teams and professional learning.
Listening to children and families matters
The launch of our Healthcare Guide comes as NHS England announces the rollout of the National Paediatric Early Warning System (PEWS) across emergency departments in England. Importantly, the system recognises that concerns raised by children, parents and carers should prompt clinical escalation, even when a child's early warning score is low.
Although designed to identify acute deterioration, rather than the fluctuating and sometimes delayed impacts of Long Covid, this approach reinforces an important principle at the heart of our guide: children and families must be heard, and clinical decisions should not rely on measurements or observations alone.
Understanding what a child can do, what it takes to do it and what happens afterwards can help build a fuller clinical picture.
Eight practical consultation prompts
The guide includes eight practical consultation prompts to help healthcare professionals build a fuller picture of a child's health and everyday functioning.
They encourage conversations that explore not only what a child can manage, but what it takes to do so, whether it is sustainable and what happens afterwards.
Used alongside clinical assessment, they can help identify fluctuating symptoms, delayed deterioration and needs that may not be apparent during an appointment.
The prompts are also available as a standalone printable resource for clinical practice.
What's inside the LCK Healthcare guide?
Designed to support everyday clinical practice, the guide offers practical guidance on:
Understanding symptoms and functioning, including PEM/PESE, fluctuating capacity and protective strategies.
Providing care while assessment is ongoing, including symptom management, treatment where clinically indicated and practical support.
Making healthcare more accessible, through adjustments to appointments, communication, environments and infection prevention.
Connecting care across services, including education, overlapping conditions and ongoing support.
Why is this Healthcare guide needed?
Six years on, children and young people living with Long Covid continue to face gaps in recognition, understanding and access to appropriate healthcare.
Through our work with children, young people and families, we hear how difficult it can be to have symptoms taken seriously, explain fluctuating needs and access care that considers the impact of illness on everyday life.
There is still much we need to learn about Long Covid in children, including effective treatments and longer-term outcomes. Significant gaps in research, treatment and care also remain for children living with ME and other overlapping prolonged, fluctuating and energy-limiting illnesses.
But children cannot wait for all the answers before their needs are recognised and addressed.
This guide aims to help bridge the gap between emerging evidence and everyday clinical practice, bringing together what we currently know, professional expertise and the experiences of children and families.
However, practical guidance alone is not enough. Long Covid Kids & Friends continues to call for:
Sustained, dedicated research funding, with children, young people and lived experience partners meaningfully involved in shaping research priorities, design and delivery.
Mandatory education and training on Long Covid and overlapping illnesses within medical and healthcare professional training, supported by ongoing Continuing Professional Development (CPD).
Clear, sustainable clinical pathways and multidisciplinary services, with access to appropriate specialist assessment, treatment and coordinated care, while protecting existing expertise.
Equitable access to healthcare and support, regardless of diagnosis, geography or socioeconomic background.
Meaningful involvement of children, young people and families in decisions about healthcare, service development and policy.
This guide is not a substitute for the research, training and specialist services children need. It is a practical contribution towards more informed, responsive and child-centred healthcare now, while we continue to advocate for the investment and systemic changes needed for the future.
Our recent work with the All-Party Parliamentary Group (APPG) on Long Covid highlights the wider changes needed to improve recognition, research, healthcare and support for children and young people.
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 the guide's development, and to the following individual contributors and reviewers:
Dr Danilo Buonsenso, Dr Jo Greer, Dr Binita Kane, Sammie McFarland and Dr Nigel Speight.
Part of a growing resource suite
Our Healthcare Guide is the second publication in our Long Covid in Children practical resource suite, developed to help professionals better understand and respond to the needs of children and young people.
Already available:
A Practical Guide to Education, with a Key Messages Poster to support understanding, inclusion and participation in education.
Further resources are in development. We're publishing each one as it becomes ready, rather than waiting for the complete suite, because children and families need practical support now.
Childhood doesn't wait.
All resources are free to download, use and share.
We hope this guide helps more children and young people access the healthcare they need and provide the professionals in charge of their care with more tools to help them support the individual needs of children and young people affected.
Help us keep showing up for children
Long Covid Kids & Friends provides free resources, support and advocacy for children and young people living with Long Covid, Myalgic Encephalomyelitis (ME) and other prolonged, fluctuating and energy-limiting illnesses.
Our work is free to access, but it isn't free to deliver.
If you value what we do, please consider becoming a supporter. Every donation helps us continue creating resources, opportunities and meaningful change for children and young people.
Every child deserves a childhood they can participate in.
