LCK In The News

Living with long Covid for four years has been "horrible", a teenager has said.
Molly, who lives in Weymouth, is now 16 and said she rarely goes out. When she does she needs the help of a wheelchair as she gets tired easily.
Without dedicated NHS support in Dorset, she is planning to travel to Liverpool to attend a private clinic.
In the absence of specialist support, Molly and her family have been doing what they can. A support dog called Woody now helps around the house. But in July, Molly will travel 300 miles (480km) to Liverpool to a private clinic, because the family cannot find help nearby.
Molly said she hoped a treatment for long Covid would be found but in the meantime she wanted "doctors and hospitals to be actually educated on it, and for us not to be judged".

Kaylee, 17, a once promising gymnast who hoped to represent her country, developed the virus on her 12th birthday and still experiences symptoms including dizziness and shortness of breath, causing her to miss school and give up on the sport she loves.
Kaylee has now not seen a specialist NHS doctor for two years. "I have tried to get in touch recently and didn't get a response," Sarah said. Sarah said she thought there should be a "thorough investigation" into the cause of long Covid, "instead of just treating the symptoms".
"There's a real lack of research into how it affects children in comparison to how it affects adults and there's real lack of support for children,"

Bethan, 20, from Pontardawe in Neath Port Talbot, was 17 and just beginning sixth-form when she caught Covid in 2021. She said she had all the "classic" symptoms of a heavy cold, but after two weeks did not recover. Bethan, who has asthma, described barely being able to lift her head from the pillow for days at a time, and said her sixth-form attendance suffered.
The charity Long Covid Kids has called on the Welsh government to ring fence money for specialist long Covid services. It said setting up a "surveillance scheme" could also help to accurately find out how many people are affected in Wales. A spokesperson said: "The services that the GPs are referring into are mainly paediatric, so there are no doctors who are familiar with long Covid, no doctors who are able to put the pieces of the jigsaw together."

New research has revealed alarming gaps in Long Covid care, with a Weymouth campaigner calling for clinic closures to 'stop immediately'. Sammie McFarland, who founded the Dorset-based charity Long Covid Kids (LCK), has reiterated her stance after the publication of a new report.

Despite NHS England confirming funding for Long Covid services through 2025/26, responses to FOI requests and direct communications with services suggests that a number of them are already closing or facing an uncertain future, the charity said.

It has already been confirmed that Dorset's own service will close on June 30 meaning anyone living with Long Covid in the county will no longer be able to get specialist care.

McFarland said: “Clinic closures must stop immediately, experienced staff must be retained, and closed clinics must reopen. Many people have endured devastating symptoms for over five years, while new cases continue to emerge".

The Independent reports on a study conducted by the University of Southampton, published in the Health Expectations journal, analysing NHS England data. The study found that 9.1% of individuals suspect they have the condition and 4.8% of people reported actually having long Covid, with higher rates observed in more deprived areas, among specific ethnic groups, parents, carers, and those with other ongoing health issues.

LCK Founder, Sammie McFarland is quoted in this article
“Pacing is a useful strategy, but isn’t curative, and takes time to learn, and even then the goal posts can change and it doesn’t doesn’t always work,” recognises Sammie McFarland, CEO and founder of Long Covid Kids. “The aim is to avoid energy crashes by balancing activity with rest.”
Sometimes medication is prescribed to help with symptoms.
Factors like sleep, nutrition and hydration are also important.

The article advises "Don’t take no for an answer, you know your body best".
“If fatigue is severe or affecting daily life, consider seeing apaediatrician or long Covid specialist (if available) or a cardiologist or neurologist for POTS or autonomic symptoms,” advises McFarland.
“Also seek guidance from an immunologist or allergy specialist if MCAS is suspected or a sleep specialist if sleep disorders contribute to fatigue.”

Journalist Emma Batha reports on the impacts of Long Covid in children, stating that five years after the World Health Organization declared a pandemic, these families feel invisible.

LCK, which now supports more than 11,000 families - predominantly in Britain, but also in countries including Canada, Greece, Italy and the United States - regularly hears of parents having to quit work.
"Families have been evicted for falling behind on their rent, and others are using food banks," McFarland told Context.
Single mum Louise eventually had to give up the job she loved.
"My savings have long gone. I'm maxed out on my overdraft and have debts," said Louise, who withheld her full name to protect her son's privacy.
One mother sent her sick son to live with her parents in the Caribbean to avoid losing her job.

Whilst the UK has the NHS, which is free at the point of use, all nine parents interviewed had been forced to pay for private treatment.
"The health inequalities are vast," McFarland added. "In 10 years' time we're going to clearly see these inequalities play out in the trajectory of these young people's future independence and work opportunities."