LCK In The News

Nation Cymru reports on a meeting of the Senedd in July, attended by Long Covid Kids Wales Rep Kate Davies and her daughter, Bethan. Three Senedd Members from Plaid, the Conservatives, and Labour listened to stories from Long Covid patients which underlining failures in the current systems of care in Wales.
The paper reports that Bethan was only 16 when she got Covid-19, and when her symptoms persisted, she found that she was not able to be referred to an adult Long Covid specialist, and that no paediatric care offered Long Covid support. “There’s just no provision for kids with Long Covid in Wales.” said her mum, Kate Davies. After listening to these stories, the MSs agreed to co-sign the letter which will be sent to incoming Health Secretary Mark Drakeford in September. “People with Long Covid need to be treated seriously.” said Mr David.
Our team would like to thank Kate and Bethan for attending this meeting and for representing children across Wales struggling to access support for Long Covid.

We are so delighted that the Worcester News was able to report on Libby Parker's excellent set of GCSE results. As they note, Libby has been battling this long term illness and yet managed the incredible results, despite only being able to spend spend limited time in school.
Well done Libby and thank you for your continuing efforts to support and fundraise for Long Covid Kids!

Kaye O'Docherty reports that around the world, millions of people have long Covid (defined as recurring or new signs and symptoms three months after a patient falls ill with COVID-19). In the UK alone, two million people self-report long Covid symptoms. The NHS continually faces criticism for its delayed approach to helping people with long Covid symptoms, more than four years since the pandemic began.
Long Covid affects people of all ages, both adults and children. In 2021, the charity Long Covid Kids (LCK) was set up to advocate for young people living with long Covid.
We thank Victoria Priest, Merel Van Der Knoop and Dr Binita Kane for sharing their experiences here.
As Merel reports, "We desperately need clinical trials and paediatric research… We’re more than four years in and there is nothing for long Covid. No new treatment centres. Some of the paediatric long Covid hubs are actually closing down.” Merel also has long Covid, and describes it as feel like you have been "knocked down multiple times - every time you try to get up you get knocked down again".

Campaigners for children with long Covid say they are "profoundly disappointed" after being refused official status to participate when the UK Covid inquiry focuses on the consequences of the pandemic on children and young people.

In a joint statement, Sammie McFarland of Long Covid Kids and Helen Goss of Long Covid Kids Scotland said they were "profoundly disappointed" by the decision, adding that children and young people with long Covid "have been consistently ignored, dismissed, and forgotten" throughout the pandemic.

The decision sends a "troubling message that their experiences are not valued by the Inquiry, echoing the UK government's disregard throughout this crisis",

More than 110,000 children in England and Scotland are still suffering., Sam Wollaston reports for The Guardian.
Toby got Covid in January 2022 and hasn’t been well since. His symptoms include pains, crushing fatigue, dysautonomia (racing heart on standing), often the inability to walk more than 50 metres or stand for long (they now have a wheelchair). And worst of all is post-exertional malaise (PEM), so that any activity he does manage – physical or mental – will come back and knock him out later, for days or longer.
The charity Long Covid Kids has been a lifeline for the family. “It has helped in two ways: advocating with one voice for awareness, understanding and action; and two, connecting us with people who are going through similar challenges. We are out of kilter with the rest of society.” Sarah would like to see the long Covid charities, which operate on shoestrings, granted funding to put forward recommendations for action.