Campaigners for children with long Covid say they are 'profoundly disappointed' not to be part of the next phase of the UK Covid inquiry.
Former health and wellbeing coach Sammie McFarland, from Weymouth, set up charity Long Covid Kids in 2020 after she and her daughter Kitty contracted Covid and both developed long Covid.
The inquiry will next focus on the consequences of the pandemic on children and young people.
Long Covid Kids currently represents 11,000 children and young people who suffer with the condition.
The charity has been among the participants speaking at the inquiry, which began in 2022.
But Sammie said she has been left 'distressed' after her charity and sister charity Long Covid Scotland were denied core participant status for the next step of the inquiry.
Core participants are legally represented during proceedings and have the right to review relevant documents, ask questions of witnesses, or make submissions in an opening and closing statement to the inquiry.
READ: Weymouth woman tells how her battle with Long Covid goes on
But the inquiry's chair, Baroness Hallett, has provisionally refused to grant the groups' core participant status, arguing that it is not necessary to be able to explore the UK and devolved governments' understanding about the risk long Covid posed for children.
Sammie and Helen Goss from sister charity Long Covid Scotland issued a joint statement that said: “We are profoundly disappointed by our provisional exclusion from the children and young people module of the UK Covid Inquiry, especially after being emailed directly by the inquiry about applying.
"Our distress is compounded by the recognition of Long Covid Kids in Scotland
as a core participant in the education and impact on children and young people module, highlighting the disparity in acknowledgment of our important contribution.
READ: Weymouth woman's fight against long Covid amid inquiry
"Children and young people with long Covid have been consistently ignored, dismissed, and forgotten since the pandemic began.
"Excluding their voices sends a troubling message that their experiences are not valued by the inquiry, echoing the UK government's disregard throughout this crisis.
"The devastating learning loss due to debilitating post-viral illness should be addressed in a module focused on children and education.
READ: Weymouth mother develops resource for kids with long Covid
They added: "We have supported the inquiry in good faith and are disappointed that our legal team will not have the opportunity to raise important questions on behalf of children injured by Covid.”
Kitty McFarland, Sammie's daughter, was 14 when she developed long Covid and now has to use a wheelchair to help her get around.
Now 18, she said she has been left 'astonished' by the decision not to give the group core participant status.
READ: Dorset Long Covid campaigner backs NHS doctors plan to sue
She added: “Long Covid Kids and Long Covid Kids Scotland are the only charities supporting kids with long Covid. The fact that they have been turned down after everything they have done for us is astonishing.
"No-one else is going to be able to speak with lived experience from our perspective which is the whole point of the Inquiry isn’t it?
No-one else is going to be able to relay what we have gone through, no-one else has listened.”
Over 50 charities, organisations, clinicians, politicians including members of the Scottish Parliament and House of Lords have signed an open letter to Baroness Hallet supporting a renewed application and urge her to revisit her approach to the applicants.
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here