LCK In The News

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.

Helen Goss says she just wants "accountability" over the alleged failings after four years of her daughter living with the condition.
Helen has since gone down the route of private healthcare for her daughter, which she explains should have been provided by NHS Grampian. Ms Goss' statement continued: "Despite repeated requests to the health board, the necessary treatment and care were consistently denied. "This failure on the part of NHS Grampian to fulfil their duty of care has resulted in medical negligence, causing additional harm and trauma to Anna and our family." Speaking with Northsound, Helen explained their referral for specialist in paediatric services was refused four times.

The action alleges the health board is responsible for “multiple failings” in Anna’s treatment and care. Helen Goss is seeking legal action against NHS Grampian. These include claims requests for Anna to be referred to the specialist paediatric services of immunology and neurology were denied.
It also claims no further help was offered after Anna was diagnosed with Chronic Fatigue Syndrome (CFS) and Paediatric Acute-onset Neuropsychiatric Syndrome (PANS)
In a statement to social media, Ms Goss said during those difficult times, the family “exhausted all avenues” within NHS Grampian to help Anna’s condition.