Sophie's Legacy leads to groundbreaking childhood cancer task force

After two and a half years of relentless campaigning by Charlotte Fairall, CEO of charity Sophie’s Legacy, and MP Dame Caroline Dinenage, the UK government has announced the establishment of the Children and Young People Cancer Task force.

In September 2020, Charlotte’s daughter Sophie Fairall was diagnosed with a rare form of cancer, and tragically passed away a year later, at just 10 years old.

Sophie’s diagnosis followed weeks of illness, during which red flag indicators for cancer were overlooked. Her case highlights the urgent need for better awareness and early detection, Despite being the number one killer of children under the age of fifteen, there is a notable absence of teaching on childhood cancer for medical professionals.

Tragically, misdiagnoses persist, and child cancer treatment, designed for adults, is harsh, leaving survivors battling lifelong health and psychological issues. Limited advances in paediatric cancer research is primarily due to insufficient interest from researchers or scientists, exacerbated by lack of funding – only 3% of cancer research funds are allocated for children.

Charlotte saw that for children like Sophie to have a greater chance, more investment in research and enhanced health professional training was crucial. Achieving this required raising the profile of childhood cancer.

Ten days after Sophie’s passing, Charlotte met with her local MP, Dame Caroline Dinenage, seeking support. Caroline promptly joined forces with her proposing a taskforce that would include scientists, researchers, philanthropists, oncologists, parents, and childhood cancer survivors. Their goal was to create a Children and Young People’s Cancer Plan, encompassing research, prompt diagnosis, world-class treatment, quality survivorship, and excellent patient experience.

On 26 April, 2022, thanks to MP Dame Caroline Dinenage, Sophie’s Legacy secured the first-ever childhood cancer debate in the House of Commons, receiving cross-party support.

Since then, the charity tirelessly campaigned for action. Charlotte and Caroline have met with various Health Secretaries, working tirelessly to push this project forward. Therefore, it is with delight and relief that we can announce that the Children and Young People’s Cancer Taskforce will begin its work.

Charlotte has responded to this news by stating, "Through the collaborative efforts of Dame Caroline Dinenage and myself, we have tirelessly pursued meaningful change for children and young people battling cancer. In memory of the inspiring Sophie Fairall, whose courageous spirit and heartfelt bucket list ignited our mission, we’ve worked diligently over the past two years to transform her dreams into impactful change. We’re hopeful this taskforce will spark the vital changes needed for children like Sophie to survive cancer and lead fulfilling lives free from the burden of treatment impacts."

Dame Caroline Dinenage stated, "Sophie’s story profoundly touched the hearts of local people, and it’s been such an honour to work with Charlotte on our mission to improve the way we detect, treat, and care for children with cancer. Our journey has taken us to the heart of government, and I’m delighted that the Health Secretary has given us this once-in-a-generation opportunity to bring together experts from across the sector to drive the changes we want to see."