Children with Long Covid want hope for a brighter future. Their words in the images below remind us why the UK COVID inquiry has such a vital role to play in their future. We invite you to join us in a show of unity by supporting our campaign on Friday 13th October 2023.
This blog contains the information you need to support our Covid Inquiry campaign and amplify the message that the experiences of children who both endured the pandemic and were injured by COVID-19, must be considered throughout the UK Covid Inquiry.
Long Covid Kids are part of the Long Covid Group represented by Jane Ryan, Bhatt Murphy. The group comprises Long Covid SOS and Long Covid Support. We stand in solidarity together to represent the Long Covid community.
Long Covid Kids represent children and young people living with Long Covid and related illnesses including; PIMS, ME/CFS, POTS, and PANS.
Children with Long Covid are a minority group. The experiences of children are often inappropriately compared alongside adult experiences.
We feel strongly that this is wrong.
Long Covid is a significant childhood illness that can cause disability and life-changing disease.
Please help amplify our collective efforts by giving us your support on social media and calling for answers.
How To Get Involved.
Date: Friday 13th October
Time: From 0800 BST and all day.
Download campaign images to share on social media with the campaign hashtags, #ListenLearnHope #GiveUsHope.
Choose from one of the example posts below that align with our key asks from the inquiry, or create your own.
Remember to tag the inquiry, your friends, Long Covid Group partners, and key professionals in the image to stand firm with the Long Covid Group and help improve the reach of your post.
Covid Inquiry - @covidinquiryuk
Long Covid Kids - @LongCovidKids
Long Covid SOS - @LongCovidSOS
Long Covid Support - @long_covid
Long Covid Physio - @LongCOVIDPhysio
Please note these are for Twitter (X), tags may vary on different social media platforms.
Example Social Media Posts (Twitter-sized)
These examples have been created in line with our key inquiry requests or questions for this module. They can be adapted to suit your needs, or copied and pasted as many times throughout the day as you can!
1
I support the call by #LongCovidKids that the @covidinquiryuk appoint a paediatric Long Covid expert witness to help them understand what has happened to my child and all children and young people living with #LongCovid.
Families deserve answers.
2
I am asking the @covidinquiryuk to protect my child from #COVID and future pandemics
by recommending #CleanAir in schools.
Listen to the evidence provided by @LongCovidKids and help us protect our children.
3
My children want a safe place to learn & play. They understand #CovidIsAirborne.
I am asking the @covidinquiryuk to listen + learn from the evidence @longcovidkids present today & make clear recommendations to protect their health from #COVID & future pandemics.
4
We are asking the @covidinquiryuk to protect children from the risk of #COVID & future pandemics.
Listen + learn from the evidence & help us protect our children so they can have a positive healthy future with equal opportunities.
5
We implore the @covidinquiryuk to make clear #PublicHealth messaging a priority in future pandemics. Alert families to risk and preventable disease.
It isn’t a job for patients.
6
I am asking the @covidinquiryuk to understand that #LongCovid has changed my child's life and our advocacy was ignored.
That is why I support @longcovidkids and want the inquiry to give us answers.
7
These are the words children injured by #COVID use to describe their #LongCovid experience.
Please hear them @covidinquiryuk
If Long Covid was foreseeable, why was it not foreseen?
Further Information
Key Concerns;
The inquiry has not appointed a paediatric expert in Long Covid to help them understand Long Covid in children.
Children are not being given the opportunity to share their experiences directly with the inquiry through oral evidence, like adults.
Children are not being given the opportunity to share their experiences directly with the inquiry via Every Story Matters, like adults.
Children are not given the opportunity to share their experiences directly with the inquiry via alternative means that may be more suitable for them, such as video and artwork.
What do the Long Covid Group want the inquiry to answer?
The Long Covid Groups have six framework questions which must be answered in Module 2 of the Covid-19 Inquiry:
What the decision-maker's understanding of long-term sequelae and Long Covid was;
What was the role of patient advocacy in the recognition and response to Long Covid;
Was there data collection and modeling of Long Covid;
Was the prevalence and the risk of Long Covid taken into account when decisions, like the imposition and then easing of non-pharmaceutical interventions, were adopted;
How - and to what extent - did decision-makers warn the public about the risk of developing Long Covid and take the disease into account in public health communications; and
Whether nearly 2 million adults and children suffering from Long Covid today was avoidable?
Do Something Amazing Today
Please donate today and help children like Olivia receive support and hope for a brighter future.
£20 a month will help us continue championing the rights of children like Olivia whose lives have been turned upside down by Long Covid.
£10 a month could help us run weekly support sessions for children like Olivia who are immensely isolated by their illness.
£5 a month could help us moderate chat forums for young people like Olivia desperate to connect with others in the same situation.
Your gift can make a meaningful difference in the lives of these brave young people.
Thank you for your support in advance.
Long Covid Kids supports children and young people living with Long Covid and related illnesses, as well as the families and caregivers who look after them. We rely entirely on donations to fund our vital work.
If you are a young person who has been affected by the ongoing symptoms of COVID, support is available, with or without a diagnosis. More info here.
If you, or someone you know has had a change in their health following a COVID infection reliable support and information can be found here:
