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A decision to refuse Long Covid Kids and (LCK) Long Covid Scotland core participant status in the UK COVID-19 Inquiry module concerning children and young people, has been branded “shameful”.
The two charities – who represent approximately 11,000 children and families suffering from Long COVID – met the legal test of having “significant interest” in matters being investigated on 9 July and it was thought that meant they would be delegated core participant status. The status allows those afforded it to make opening and closing statements, suggest lines of questioning, and have the right to apply to the inquiry to ask questions of witnesses.
The charities, according to an open letter sent on 14 July and backed by over 50 charities, organisations, clinicians, ministers, and other backers, were “shocked and disappointed” by the decision, made by Chair Lady Hallett. She is confident the inquiry can explore the Government’s understanding of the risk that children might acquire Long COVID without their being core participants.
The decision, which campaigners argue is further evidence of key voices being dismissed, comes after organisations came together earlier this year to express concern at the lack of new investment into Long COVID, the announcement of landmark legal action in Scotland regarding medical negligence towards a child with Long COVID, and ongoing complaints regarding graded exercise therapy being suggested for Long C patients despite evidence this can worsen symptoms.
Jane Ryan solicitor for the charities says she is “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”. She branded the decision, “shameful”.
Until now, Ryan continued the inquiry “has consistently sought my clients’ input…recognising their unique experience and role”.
Diane Fisher, a parent of a child with Long COVID, said in the open letter: “LCK has fought for us since 2020, they understand the struggles experienced by children suffering with Long COVID, and their families, better than any other organisation.
“They stand out as a beacon of hope, support and information in an otherwise disappointing and distressing quagmire of gaslighting, denial and ignorance from medical, educational and political bodies. They will know the right questions to ask to help the inquiry understand how our children have been so badly let down.”
The charities have engaged with the inquiry since 2022 including: Providing witness statements, meeting with the inquiry team, providing support and attending Every Story Matters events, sharing the inquiry’s work with members and supporters, participating in impact films, being members of the Children and Young People’s forum, and being core participants in the Scottish COVID Inquiry, Module 2 and Module 3 of the UK Inquiry.
Children and young people with Long COVID suffered the dual burden of the social and educational disruption, and loss of learning that all children suffered as well as long-term injury to their health. For many children and young people with Long COVID those impacts persist, resulting in chronic illness, substantial and long term impairment.
ONS statistics reveal that while the prevalence of Long COVID in children is lower than in adults, a substantial number are impacted; 111,816 children aged 3-17 year in England and Scotland were estimated to be affected in March 2024, when the survey was conducted. Almost 21,000 children describe their Long COVID as limiting their ability to undertake day-to-day activities a lot, while a further 60,744 were limited a little.
When the ONS last estimated Long COVID prevalence was published in March 2023 through the COVID Infection Survey (CIS), the estimated number of children impacted was 62,000 – suggesting an upwards trend in this age group.
The lack of interest the Department for Education (DfE) has shown so far in Long COVID means it appears to not be in a position to inform the inquiry.
A DfE document “School attendance data collection impact assessment” published in January 2024 states the effects of COVID-19 and Long COVID are, “as as yet unknown and will need to be kept under review as it is likely to have a long-term impact on the education of children”.
Current guidance states there is no need to test children, making it impossible for the Government to monitor the impact.
Lady Hallett’s decision comes after five organisations representing those with Long COVID released an open letter criticising the previous government for its response to pleas for additional funding for research into the illness as statistics recently showed that two million people were experiencing it – the majority for two or more years. The lack of new funding makes the UK an outlier compared to other countries like the US which recently allocated another $515 million in research funding for what it called an “urgent healthcare crisis.” The UK equivalent would be around £80 million.
Meanwhile, in Scotland authorities are facing increasing criticism from Long COVID sufferers, including a landmark legal case challenging the failure of authorities to provide adequate care.