Campaigners for children with long Covid say they are "profoundly disappointed" after being refused official status to participate when the UK Covid inquiry focuses on the consequences of the pandemic on children and young people. Long Covid Kids and Long Covid Kids Scotland had applied for core participant status for Module 8 of the inquiry, which promises to "examine the impact of the pandemic on children and young people in England, Wales, Scotland and Northern Ireland". Public hearings for the module are unlikely to take place until 2026, but the inquiry opened to applications for core participant status in May.
READ MORE: Why some scientists are saying it's time to stop talking about 'long Covid' From long Covid to PANDAS - are we finally starting to unravel post-viral illness? The Covid inquiries: The highs, the lows, and the revelations so far 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. Following their application in June, the inquiry found that the charities had met the legal test of having “significant interest” in the matters being investigated. However, 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.
The UK Covid inquiry says it has not yet finalised its list of core participants for Module 8 and stressed that individuals and organisations do not require core participant status to provide evidence to the inquiry. A spokesman for the inquiry said Baroness Hallett did not want the inquiry "to run and run". It comes ahead of the publication on Thursday of the UK inquiry's first report, covering Module One 'Resilience and Preparedness'.
Long Covid Kids and Long Covid Kids Scotland - which represent 11,000 families in total - intend to appeal the decision. In a joint statement, Sammie McFarland of Long Covid Kids and Helen Goss of Long Covid Kids Scotland said they were "profoundly disappointed" by the decision, adding that children and young people with long Covid "have been consistently ignored, dismissed, and forgotten" throughout the pandemic. The decision sends a "troubling message that their experiences are not valued by the Inquiry, echoing the UK government's disregard throughout this crisis", they added.
Helen Goss is currently suing NHS Grampian in relation to her daughter, who has been sick with long Covid since 2020 Evidence seen by the UK Covid inquiry last year included documents relating to long Covid on which then-Prime Minister Boris Johnson had scrawled the words "b*****ks and branded the condition "Gulf War syndrome stuff". Giving evidence to the Scottish Covid inquiry, Ms Goss said she had also been shocked to overhear the Scottish Government's then-national clinical director, Professor Jason Leitch, refer to campaigners seeking greater mitigations to prevent the spread of Covid in schools as "extremists" . Ms Goss, a long Covid sufferer from Aberdeenshire, is also suing NHS Grampian for medical negligence in relation to her 11-year-old daughter, who has been unable to return to school since developing long Covid in 2020.
She alleges that she has incurred "substantial expenses" paying for private treatment which "should and could have been provided by NHS Grampian". Ms Goss and Ms McFarland said it was "crucial for the inquiry to make recommendations that will better safeguard children in future public health crises", adding: "We believe this is impossible until the Inquiry demonstrates an understanding of the impact of Long Covid on children and families. "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.
” Baroness Heather Hallett is chairing the inquiry The Office for National Statistics currently estimate that there are around 56,000 children aged three to 17 in Scotland and England with long Covid - defined as symptoms persisting beyond 12 weeks. These can include pain, extreme fatigue, and post-exertional malaise. In some cases symptoms are so debilitating that patients are in wheelchairs or bedbound.
Jane Ryan, the solicitors for the Long Covid Kids groups, said: "I am puzzled that at this final and vital stage for children and young people with Long Covid the Inquiry has chosen to close the process to them, shut the door and deny them the special rights core participants have. "If this decision stands it is shameful." A spokesman for the UK Covid-19 Inquiry said: “It is not a requirement to be a Core Participant to provide evidence to the UK Covid-19 Inquiry.
"The Chair, Baroness Hallett, received many Core Participant status applications for the Inquiry’s eighth investigation, ‘Children and Young People’. "Around half have been granted to groups covering a wide range of perspectives and areas of expertise. “The public deserves a serious, thorough and comprehensive examination of the UK’s planning and response to the pandemic.
"However, the Chair does not intend for this inquiry to run and run. "She believes that the scope of topics covered by the 21 groups so far granted Core Participant status for this investigation is broad and therefore sufficient, while this number of groups will enable the Inquiry to conduct its work efficiently and at pace.".
