LCK In The News

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).

Becky Diamond's article describes the complex nature of Long Covid, the psychologising of the condition that her family has experienced, despite research showing viral persistence, inflammation, fibrinogen microclots and muscle damage and how families who have a child with Long Covid need more support and recognition from medical professionals.
Ms Diamond's article also signposts families to the Long Covid Kids Support Services.

The online choir has fifteen children from several countries, including the Netherlands. It was set up by Merel van der Knoop (42), pianist and music teacher in London, who also has long covid herself.
The children (8-16 years old) have often been ill for years, says Van der Knoop. Their physical condition is poor and they are much more at home than they would like. The very things they want so badly as a teenager are not in it: sports, music, having carefree fun with friends.
But the choir hour on Sunday evening between six and seven o'clock Dutch time is something to look forward to. An hour of singing, laughing, forgetting for a moment that you have long covid. The children are among people who know what they are going through. Not only do they sing, but they also do breathing exercises ("and now the dragon blows out!") and mindfulness.

Helen discusses how referrals to Neurology and Immunology were rejected four times and Anna was also discharged from CAMHS, who had been providing her with some physiotherapy care.
Anna has had no NHS medical care since then and her health has declined due to Covid reinfection as well as a norovirus infection. NHS Cardiology said they can not treat Anna's POTS and the family are now paying to see a private Paediatric Cardiologist.