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In February 2024, after two and a half years of dedicated work and campaigning by Charlotte Fairall, CEO of Sophie’s Legacy, and MP Dame Caroline Dinenage, the UK government announced the launch of the Children and Young People Cancer Taskforce. Despite significant progress, the newly elected Labour government has ‘paused’ this crucial, life-saving initiative.
In September 2020, Charlotte’s daughter, Sophie Fairall, was diagnosed with a rare form of cancer. Tragically, just a year later, Sophie passed away at the age of 10. In the weeks leading up to her diagnosis, Sophie had been unwell, and despite her family repeatedly contacting the GP and presenting red-flag indicators of cancer, her condition went undiagnosed. By the time her cancer was discovered, Sophie had developed a 12cm tumor in her tiny abdomen. The possibility of a better outcome, had her cancer been diagnosed earlier, remains a painful question for those who loved her.
Unfortunately, stories of misdiagnosis like Sophie’s are far too common. For children who do receive a diagnosis, treatment, designed primarily for adults, is often harsh, leaving many survivors with lifelong health and psychological issues. The lack of advancement in pediatric cancer treatment is largely due to limited research interest and insufficient funding. In fact, only 3% of funds raised for cancer research are allocated to childhood cancers.
Charlotte recognised that to improve treatment options and outcomes for children like Sophie, there needed to be greater investment in research and enhanced training for health professionals. Raising awareness of childhood cancer was key to achieving this goal.
In February 2024, following years of campaigning, the Conservative government launched the Children and Young People’s Cancer Taskforce. Comprising representatives from the NHS, scientists, researchers, philanthropists, oncologists, parents, and childhood cancer survivors, the task force aimed to create a comprehensive Children and Young People’s Cancer Plan.
The taskforce has now developed an action plan focused on research, early diagnosis, world-class treatment, quality survivorship, and excellent patient care, with the goal of improving outcomes for young cancer patients. The plan also sought to optimise the use of existing resources, ensuring that minimal extra funding would be necessary. For example, by promoting collaboration among research funders to minimise duplication of efforts. In May 2024, this action plan was approved by the Conservative government.
However, in July 2024, the Labour government came to power and in September 2024, Childhood Cancer Awareness Month in the UK, announced that they would be ‘pausing’ the work of the Children and Young People’s Cancer Taskforce—a devastating decision.
Given that approximately ten children and young people are diagnosed with cancer every day in the UK, with one in 450 children receiving a cancer diagnosis by the age of fifteen, and with over eighty-eight subtypes of childhood cancer making it collectively common, this work is more important than ever. It is critical that this initiative is reprioritised. For the sake of our children, we cannot afford to let this effort fail.
Sophie’s Legacy remains steadfast in its commitment to advancing pediatric cancer research and treatment. The charity will continue campaigning to ensure the taskforce can resume its vital work.
You can support this cause by downloading our letter, and sending it to your local MP urging them to take action. Together, we can create change.
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