LCK In The News

In September, the Guardian published a reader callout asking for Long Covid stories. Journalist Sam Wollaston calls the response extraordinary and the stories heartbreaking.
In this article, Lucy Keighley describes her life with Long Covid and Dr Binita Kane is also interviewed. Dr Kane is a consultant respiratory physician from Manchester with a special interest in Long Covid. Her 10-year-old daughter, Jasmin, became very unwell with Covid and later developed long Covid. Jasmin didn’t leave the house for a year and missed a lot of school. Kane wasn’t satisfied with some of the advice they were getting, so she consulted doctors in Germany and South Africa who were pioneering new treatments. These helped Jasmin, slowly – over the next two years, she improved. Now 13, Jasmin is at secondary school and about 95% recovered.
Kane has witnessed the virus at all stages and from all angles. She explains that long Covid is an extension of acute Covid. “Some people don’t agree with that, but that is what those of us who are interested in it believe,” she says. And it’s not true that little is known about it. “It’s the most-studied disease in history – something like half a million papers have come out in four years. There’s never been anything like that for any other condition.”

Parents of children with long Covid claim they have been accused of faking or exaggerating their child’s illness, leading to social services’ involvement and, in some instances, court cases and the threat of the child’s removal from the home.
Doctors struggle to diagnose the condition due to its complex range of symptoms and often treat it as a psychological rather than physical disease, with parents telling i they have been accused of child abuse and of fabricating the illness as a result.
Experts have compared the situation to the way professionals have previously dismissed ME (myalgic encephalomyelitis), an almost identical disease in terms of the variety of debilitating symptoms and lack of universal diagnosis or treatment.

LCAI says there are many people who developed Long Covid following infection during the very first wave in 2020 and have had no recovery.
Sarah O'Connell, co-founder of LCAI, told the Oireachtas Committee on Health this week that some people continue to worsen, and their lives are utterly devastated.
The organisation said that those affected feel neglected and dismissed by the health system.
Along with health issues, they face problems with employment, finances, limited clinic services, plus a lack of staff and GP and public awareness.

AN ADVOCACY GROUP for people suffering from symptoms of Long Covid is calling on the Government to urgently review how people with the condition are cared for.
Long Covid Advocacy Ireland (LCAI) says there are ‘huge inconsistencies’ in how people are being treated at the dedicated Long Covid clinics across the country, and a lack of knowledge among both GPs and consultants about the condition.
“What we are hearing is that patients are not receiving symptom management from clinics,” LCAI’s Sarah O’Connell told The Journal.
“There is no ‘silver bullet’ treatment for Long Covid yet. However, there’s a huge amount that can be done to help patients manage their symptoms and improve their quality of life. For example, if a patient has issues with sleep, you can prescribe melatonin. If a patient has pain issues, you could prescribe anti-inflammatories. None of this is controversial, but for some reason, almost all the patients we speak to have not had any medication prescribed by the Long Covid clinics they attend.”

Authorities in Scotland are facing increasing criticism from Long COVID sufferers, including a landmark legal case challenging the failure of authorities to provide adequate care.
In December, Thompsons Scotland solicitors formally notified NHS Grampian on behalf of the family of Anna, a child suffering with Long COVID, of their intention to pursue legal action against the health board. In January, it issued a formal letter informing NHS Grampian of the decision to initiate legal proceedings for damages stemming from medical negligence.
UK Long COVID charities have also issued a joint statement criticising a guidance update by the Scottish Government on the NHS Inform website, via the official @scotgovhealth X channel (formerly Twitter).
The groups Long COVID Kids, Long COVID Scotland, Long COVID SOS, Long COVID Support and Long
The children represented have struggled to have their conditions recognised. Those who have, have been offered cognitive behavioural therapy (CBT) and graded exercise therapy (GET).