Sophie was showing several red flag symptoms of childhood cancer—persistent nausea, ongoing stomach pain, and unexplained bleeding. By the time she was diagnosed, she had a 12cm tumour in her abdomen that could be physically felt.
As parents, we weren’t aware of the signs and symptoms of childhood cancer. Like many others, we believed it was rare and unlikely to affect our child. We now know that 1 in 320 children will be diagnosed with cancer before they turn 20. While each individual childhood cancer type is rare—there are over 88 different subtypes—collectively, childhood cancer is not rare.
Childhood cancer is the number one cause of death by disease in children under 15, yet alarmingly, there are no dedicated training courses on paediatric cancer for health professionals. GPs receive some training during their initial education, but once qualified, there are currently no official UK courses specifically focused on childhood cancer. Recent statistics show that, on average, a GP practice in the UK can expect to see a case of childhood or young person’s cancer every 1.8 years. We all know that the earlier cancer is detected, the better the outcome. That’s why we believe enhanced training on the signs and symptoms of childhood cancer, along with public awareness that childhood cancer is not rare, is vital to improving early detection.
We also want to see the launch of a national awareness campaign for parents to help them recognise the signs and symptoms of childhood cancer. For further information on early detection, we recommend visiting the Grace Kelly Childhood Cancer Trust’s signs and symptoms page.
We’ve heard countless stories from parents who, like us, made repeated visits to their GP or A&E, only to be reassured their child had a virus, constipation, or something minor. This has to change—especially when 53% of children with cancer are diagnosed via A&E, compared to just 22% of adults. (Source: Public Health England, National Cancer Registration and Analysis Service)
Through the work of the Children and Young People’s Cancer Taskforce, one of the key workstreams is focused on early diagnosis. We are hopeful that the recommendations from this group will lead to meaningful improvements in how and when children are diagnosed.
September is Childhood Cancer Awareness Month, and it’s an especially poignant time for us, as it was the month Sophie was both diagnosed and passed away. Each September, we focus on educating our community about all aspects of childhood cancer—from signs and symptoms to the chronic lack of funding. We encourage individuals, schools, and businesses to “Go Gold” to raise awareness, as gold is the colour symbolising childhood cancer.
My advice to any parent is this:
Sophie wanted the following things changed and this will be her legacy in memory of a remarkable young girl who touched so many lives.
During Sophie’s many hospital stays, we came to understand the vital role play specialists play on children’s hospital wards.
Sophie was passionate about improving hospital food for children. She described it as “disgusting”—a powerful statement from a child who genuinely loved food.
Feeding parents of children in hospital was one of Sophie’s top priorities. She never understood why a parent staying with their sick child wasn’t also provided a meal.
Childhood cancer is the number one cause of death by disease in children under 15, yet there are no dedicated training courses on paediatric cancer for health professionals.
Childhood cancers are rarely linked to lifestyle or environmental factors, yet this area continues to receive the least amount of funding and research attention.
