What have we done?


World Health Organisation (WHO) Long Covid Panel - defining Long Covid. 

Ministerial Round Table on Long Covid chaired by Lord Bethel / Matt Hancock / Sajid Javid / Maria Caulfield - representing the experiences of children and young people.

National Institute for Health and Care Excellence (NICE) Expert Long Covid Panel representing the experiences of children and young people.

NICE - Contributing to the Long Covid Guidelines. 

National Institute for Health Research (NIHR) - Long Covid Expert Group. 

International Severe Acute Respiratory and Emerging Infection Consortium (ISARIC)-  representing the experiences of children and young people.

NHS Long Covid Task Force - presenting & representing the experiences of children and young people.

Clinical Commissioning Groups - consultation for the development of the Paediatric Long Covid Hubs.

Westminster Forum - presenting the experiences of children and young people. (March 2022)

All-Party Parliamentary Group, UK Parliament (APPG) on Long Covid in Children - providing evidence.

Families Healthtalk Advisory Panel Oxford University - representing the experiences of children and young people.

Catherine Peckham Symposium - presenting the experiences of children and young people. (Jan 2022)

The Clock Study - Delphi Process for a research definition on Paediatric Long Covid.

The Children and Young People’s Commissioner for Scotland - children's rights.

Royal College of Occupational Therapists National Guidance -  development of OT national guidance.

Center of Disease Control - referenced as a patient support resource.

NICE - referenced as a patient support resource.

National Voices Webinar on Long Covid - networking & collaboration.

Long Covid Europe - Membership, information sharing and coproduction.

Labcorp Drug Development Webinar USA - Engaging Patients in Long COVID


Peer to Peer Support Group - 5000 members - information sharing, validation and connection

Patient Signposting - improving the lived experience

LCK Connected - Online hangout sessions provide a connection for children and young people living with Long Covid.

LCK Occupational Therapist Group Support - funded access to professional guidance.



Patient Support Resources - including Cautious Tortoise, Pacing Penguins, Teachers Tips

NHS GP 'Think Long Covid' - co-production of GP awareness leaflet

NHS My COVID Recovery Website - consultation on the pediatric page 

Long Covid Kids Website - with a visitor every 45 seconds 

Long Covid Kids Awareness Video - to raise awareness and change the narrative early in the pandemic

Long Covid Education & Awareness Pack - for schools & families 

Long Covid Europe - school guidance

Published Articles - research, opinion pieces, and discussion including BMJ, The Lancet, Nature, The Conversation, New Science Magazine, National Geographic

Campaigning For Prevention

CoSchools - Supporting schools by delivering tools to help make them healthier

Schools Freedom of Information Requests - highlighting experiences in England and Scotland.

International Webinar of Pediatricians - bringing together expert clinicians and patients.

Technology 101 Prevention Webinar - hosted with industry experts to look at the options available.

Social Media Campaign - the only way to avoid Long Covid is to avoid Covid.

Social Media Campaign - CO2 Monitors in schools.


Campaigning For Awareness

Long Covid Kids in the News - participation in documentaries and press interviews. 

Social Media Campaigns  - consistent messaging across multiple platforms - Kids get Covid / Long Covid / PIMS

National & International Representatives - England, Scotland, Ireland, Wales, Isle of Man, USA, Canada, Greece.



Pediatric Covid Research Library - a useful resource for families and clinicians. 

Paediatric Research - independent research.

Connections - connecting participants and researchers for UK & International research. 

Social Media Campaigns - sharing lived experiences to raise awareness and interest.

Polls & Surveys - to assist policy creators and service providers.