Impact
What have we done?
Participation
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
Support
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.
Creation
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.
Research
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.