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Long Covid Kids

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Long Covid Kids
FoundedOctober 2020
FounderSammie McFarland
Legal statusCharitable Organization
Websitewww.longcovidkids.org

Long Covid Kids is a UK-based charity that advocates for families, children and young people affected by Long Covid and related illnesses.[1][2] Founded by Sammie McFarland in October 2020,[3] the organization aims to raise awareness, provide support, and advocate for research and policy changes in favour of those impacted by long COVID.[4][5][6]

Background

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The charity was established in response to the growing number of children experiencing prolonged symptoms following a COVID-19 infection.[7] Sammie McFarland founded the charity with the support of a team of volunteers after her own daughter’s struggle with long COVID.[2][7][8] The group began with seven families, and once established, 300 more quickly reached out.[9] By January of 2022, the group involved more than 5,500 families, with around 100 to 120 new families joining them weekly.[9] As of July 2024, the group's two chapters represented 11,000 families in the UK.[10]

Helen Goss serves as the COO and Scotland Representative for the charity.[11] She took legal action against the NHS for what she claimed was medical negligence towards her daughter suffering from long COVID.[12][13][14]

Activities

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The charity raises awareness about the symptoms and impact of long COVID in children to aid early diagnosis and intervention.[1][15] It also provides educational materials, online meet-ups, and signposting to healthcare professionals and support to children, young people, and their families.[16][17]

In a survey conducted by psychologist Frances Simpson of Coventry University, also a co-founder of the group, parents were presented fifty symptoms to select which their children presented.[18] Parents returned over 100 symptoms in their responses.[18] The group advocated for more studies into the effects of long Covid in children, as well as trials to benefit children for medicine that had been shown to improve the condition of adults suffering with long Covid.[19]

The charity aids the development of research through patient and public involvement and also advocates for an increase in funding for research to understand the long-term effects of long COVID on children and to develop effective treatments.[6][20] Along with Long Covid Support, they published the first research available on reinfection effects in patients already treating long Covid, and have worked with Long Covid SOS and Pandemic Aid Networks to expose the flaws in research highly-publicised by the media which suggested long Covid patients can recover within a year.[21] The group requested the Scottish Government in 2022 allocate funds specifically for the care of children with long Covid, and noted the failure of medical professionals to treat the condition seriously.[22]

It also advocates for informative public health campaigns, including appropriate mitigations in schools.[23] The charity has supported the UK COVID inquiry and were core participants in Module 2.[24][20] They applied for core status for Module 8, which is likely to be in 2026, but were denied in July 2024 by Baroness Hallett.[10] McFarland and Goss have both stated the decision was not only disappointing but "echoes the UK government's disregard" for children with long Covid.[10] That decision was later overturned.[25]

References

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  1. ^ a b "Long Covid: Children affected take fight to Downing Street". BBC. 1 April 2022. Retrieved 1 August 2024.
  2. ^ a b ""An absolute tsunami of need": a conversation with Sammie McFarland, founder and CEO of Long COVID Kids". WHO (Press release). 12 September 2022. Retrieved 1 August 2024.
  3. ^ Jones, Harrison (25 January 2021). "Children battling symptoms of Covid months after being infected". Metro. Retrieved 21 September 2024.
  4. ^ "Devastating impact of Long COVID on children revealed in MDX exhibition". Middlesex University London. 27 April 2023. Archived from the original on 1 August 2024. Retrieved 1 August 2024.
  5. ^ Jones, Andy (19 October 2023). "Campaigning mum's help for children with long Covid". Dorset Echo. Retrieved 1 August 2024.
  6. ^ a b "Long Covid kids: Mum's 'heartbreak' over children's illness". BBC. 5 February 2021. Retrieved 1 August 2024.
  7. ^ a b Miles, Christine (9 June 2023). "In the shadow of long Covid". Church Times. Retrieved 1 August 2024.
  8. ^ "Life as a young person with long COVID: "You go through so many phases of up and down, it's like being on a rollercoaster forever"". WHO (Press release). Retrieved 1 August 2024.
  9. ^ a b Harden, Kari Denique (22 January 2022). "The kids are not alright: Data suggests 10% of children with COVID-19 become "long-haulers"". Salon. Retrieved 21 September 2024.
  10. ^ a b c McArdle, Beth (14 July 2024). "UK Covid inquiry: Long Covid Kids denied 'core' status". The Herald. Retrieved 21 September 2024.
  11. ^ Mitchell, Jenness (19 January 2024). "Aberdeenshire mum launches legal action against NHS Grampian over daughter's long COVID treatment". Sky News. Retrieved 6 August 2024.
  12. ^ Hosie, Louise (18 January 2024). "Long Covid: NHS legal action launched by family of girl". BBC. Retrieved 6 August 2024.
  13. ^ "Children with long Covid in Scotland 'dismissed and ignored'". BBC. 2 November 2023. Retrieved 6 August 2024.
  14. ^ Forbes, Nick; Roberts, Lizzie (24 May 2024). "Information about Covid-linked condition deliberately suppressed, inquiry told". The Times. Retrieved 6 August 2024.
  15. ^ Connor, Chloe; Kranert, Michael; Mckelvie, Sara; Clutterbuck, Donna; Mcfarland, Sammie; Alwan, Nisreen A. (15 April 2024), A Critical Analysis of UK Media Characterisations of Long Covid in Children and Young People, doi:10.1101/2024.04.13.24305152, retrieved 6 August 2024
  16. ^ "Scottish Children's Futures Are At Risk as Long Covid Takes Hold". Deadline News (Interview). 17 November 2023.
  17. ^ Zapata, Tomas; Gosling, Justine; McFarland, Sammie (25 July 2024). "We can do better for young people with long covid". BMJ. 386: q1664. doi:10.1136/bmj.q1664. ISSN 1756-1833. PMID 39053941.
  18. ^ a b Lovett, Samuel (3 March 2021). "Long Covid in children has to be studied, scientists say". The Independent. p. 10. Retrieved 21 September 2024 – via Newspapers.com.
  19. ^ Lovett, Samuel (17 March 2021). "Vaccination could seriously reduce the severity of long Covid". The Independent. p. 16. Retrieved 21 September 2024 – via Newspapers.com.
  20. ^ a b "Written evidence submitted by Long Covid Kids". Parliament of the United Kingdom. February 2023.
  21. ^ An incomplete picture: understanding the burden of long Covid (PDF). Economist Impact (Report). The Economist. 2024. p. 68. Retrieved 21 September 2024.
  22. ^ Campbell, Jolene (5 June 2022). "Long Covid in children: 'It's been a struggle to be heard'". The Scotsman. Retrieved 21 September 2024.
  23. ^ Farden, Josh (9 May 2021). "COVID On Air #11: Aiding The Young with Sammie Mcfarland" (Podcast). EndCoronavirus.org. Retrieved 1 August 2024.
  24. ^ "INQ000280195 - Witness statement of Sammie McFarland on behalf of Long Covid Kids, dated 25/09/2023 UK Covid-19 Inquiry Archives". UK COVID-19 Inquiry. 13 October 2023. Retrieved 1 August 2024. Note: Document must be downloaded to be viewed.
  25. ^ Jones, Andy (6 September 2024). "Weymouth campaigner welcomes charity's inclusion in Covid Inquiry". Dorset Echo. Retrieved 21 September 2024.