Hello 

Here we are at the end of a very busy week, with the APPG on Tuesday, the meeting with the paediatrician on Wednesday and the meeting with the NHS yesterday.

If you missed it you can catch it here.

It really feels like we are making some progress now, and this was demonstrated by the response of the Parliamentarians to our lived experience at the APPG. Hearing our stories was very moving for all of us, as we identified with the traumatic experiences of having children who are unwell, often in strange and scary ways, and the lack of medical care and support that many of us have faced.

In the powerful words of Lord Strasburger:

“This is a national scandal. You have been ignored, you have been marginalised you have been disbelieved, you’ve not been offered any treatment for you or your children, you’ve not been offered any support, you’ve not even been offered any interest…it’s an outrage’. 

Many of our group, whether present or watching on YouTube, were in tears at this first validation of the awful situation that we find ourselves and our families in. This has now been viewed online by a great many people, including those with the power to change things, so we are hopeful that this will start to lead to greater awareness and better care.

 Certainly, we had a long meeting with a paediatrician on Wednesday, in which a number of very interesting ideas have been discussed, including the publishing of our Long Covid Kids survey. We have 250 surveys now, which is brilliant and we appreciate every one of of our members  who has taken the time to fill it in. It would be even better to reach the 300 mark, so if you are in our group and haven’t done it, please do.

This data will be the first clear evidence of long covid in children, and scientists need evidence! One of the main obstacles to our care right now is a lack of empirical evidence, it allows doctors and policy makers to dismiss us – please be part of the solution!

The other projects that are being discussed are not quite ready to be announced yet, but very soon we will be able to let you know more. Likewise, in the meeting Sammie attended with the NHS some very interesting ideas have been discussed, and these will be announced as soon as they are firmed up. 

Sammie also dropped into the Independent Sage Briefing to ask;

"According to ONS figures 15% of children who get Covid go on to suffer with long Covid, which equates to 40,000 children today with potentially many more unidentified due to testing issues. Long Covid kids represents over a thousand children who have failed to recover from their initial Covid infection. Covid is airborne so what can individual schools do in the absence of government support to protect children and communities when they are forced to return to school."

Listen in here....

Finally, just to say a big welcome to all of those who have found us. We all know the power of the collective and how helpful it is to feel part of something, particularly with others in the same situation. We notice the support and care that you give to each other and are very grateful that people are using this group in such a positive way. Unfortunately, our numbers will continue to grow as more and more people find themselves in this position, so please keep up the kindness!

Warm wishes 

LCK Team x

How Safe is Your School?

With this weeks announcement that schools may return around the 8th March, now is the time to start raising any concerns with your school.  In the absence of strong leadership supporting support schools seems the least we can do.

Watch out for our School pack coming soon that will help!

Please Watch & Share

How safe is your school? Practical advice & a simple scientific explanation.

Latest Stats

We are regularly asked for the source of our data.

It is from the Uk Government Dashboard, we just publish in a clearly.

Primary school outbreaks up until the 3 rd of January were as significant as secondary school outbreaks. The narrative that secondaries and universities are of greater concern is inaccurate according to the Governments own Weekly Flu and Covid-19 Surveillance Report.

Early Years children are significantly overlooked. Hospitalizations of young children due toSARS-CoV-2 are equally as prevalent as school aged children and adolescents.

Children’s hospital admissions due to SARS-CoV-2 were 13 x higher in December than those in August. January’s figures have exceeded December’s despite three days of the month remaining.

Support Our Petition 

Our Petition Asks

Promptly create an awareness campaign detailing the effects of COVID19 on children.

Create a clear campaign that informs parents of the COVID symptoms children present with. This should include the criteria for a child to get a test and the long-lasting effects COVID can have on children.

What We Wanted Our Petition To Say

Remove barriers to children accessing a free test by changing the wording on the government website to reflect the symptoms children present with.

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But for it to be approved for publication we had to change the wording.

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About Us

Long Covid Kids Support & Campaign Group started in the autumn & represents over 400 children.

Our children got COVID19 in Lockdown 1/2 & are still ill.

We receive emails from parents who tell us that by the time they realised their child needed a test it was 'too late for testing', they didn't 'know what to look for'.

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This Is Important

These children are not included in the statistics.

Children must be counted so informed decisions can be made in education and healthcare.

Children may also need Long Covid services and without being counted how can we evidence that?

We are self-funded and run by volunteers.

Donations of time, skills or money gratefully received.

Every donation counts and will enable us to keep going.