We were delighted to be invited to participate in the Round Table Meeting again this month. Lived experience is essential to understanding, planning and implementing support and policy.
During this month’s meeting we took the opportunity to raise all the following issues within the hour slot. The meeting moves at a pace & Sammie and Nathalie do their best to take concerns raised forward. Please forgive us if your specific point was not raised, we aim to follow up with a letter in due course.
We are grateful as always to Claire Hastie of Long Covid Support and also Ondine from Long Covid SOS who also spoke for children, teachers, GPs and adults with Long Covid.
1. The symptom list on the NHS and Government websites need updating
3. Statistics: 31% of all cases are currently in ages 5-14 years olds. 80% of hospitalised children are admitted "due to" Covid. 60% of those have no underlaying medical condition.
4. Children are unable to obtain referrals to Long Covid hubs.
6. Prevention needs to be a focus. We need mitigation measures in schools to protect NHS resources and the long term health of children and families.
7.The average age of children in our Long Covid support group is 10 & this age group has no protection.
8. There is no cure for Long Covid, prevention must be the focus. We need a child focused public awareness campaign.
We were pleased to hear confirmation direct from Mr. Javid that there are plans to update the COVID-19 symptom list soon, but we worry it will be too late.
LongCovidKids.org is a patient-led advocacy and support organisation led by Sammie Mcfarland for families of children with Long Covid. Our story started with a short film on the long-lasting symptoms of Covid in children.
We are supporting research with The Long Covid Kids Study with PeopleWith
Each Sunday we send out a newsletter providing a weekly round-up of statistics, the latest reports in the media, current research, and LCK news. Read previous issues and SIGN UP
If your child experiences any symptoms that indicate they are unwell, it COULD be COVID-19, and you should get them a test to help identify if it is a current Covid infection. Please see our Frequently Asked Questions page for more information.