My son died at 14 years old so I’m campaigning to prevent misdiagnosis | UK | News

Fred Bennett was a happy, healthy teenager who was always on the move – whether that be on his bike, his skateboard, or climbing up a tree. So when the 13-year-old started feeling tired and off his food, his family thought it was due to typical teenage changes and the end of the school year. Then, when his glands began to swell, they took him to the GP thinking it was probably glandular fever.

But a blood test revealed he had acute lymphoblastic leukaemia, and within hours, he was being prepared to start treatment to fight the disease. Despite the best efforts of doctors, the treatment did not work, and he died in May 2020, just nine months after his diagnosis.

His family is campaigning with the children’s cancer experts at CCLG: The Children and Young People’s Cancer Association to try and reduce the number of families that have to suffer like they have.

They are urging parents and carers to recognise patterns of change in their child’s health, and warning that the risk of developing childhood cancer is comparable to other serious childhood conditions, including diabetes, epilepsy and bacterial meningitis.

Fred’s mother Louise said: “We were so informed about the signs of meningitis or the signs of sepsis or signs of all of those other childhood illnesses, whereas cancer symptoms can often be quite vague and can often be quite wide-ranging, so it’s not something that parents or actually GPs necessarily automatically go to.

“And obviously it’s the last thing that parents want to think is the matter with their child, but it’s just recognising those symptoms.

“With Fred, although his leukaemia did come on quite suddenly, all of the symptoms that he had could very easily have been explained away. It’s only looking back when you put all of those symptoms together as a group that you can see, ‘Oh, actually, yes, of course’.

“I think doctors see all sorts of children with all sorts of different pain thresholds and personalities, but you know yourself when your child is not right. And just having that confidence to just keep going back and saying, there’s something, something amiss here, I think is really important. And to not feel embarrassed about it.”

Dr Sharna Shanmugavadivel, a paediatric emergency medicine doctor and the Child Cancer Smart Lead at the CCLG said: “While childhood cancer is uncommon, it is important that families understand it is not as rare as many people may think.

“Many people will be surprised to learn that the risk of a child developing cancer is comparable to the risks of other childhood conditions.

“Unfortunately, childhood cancer can be difficult to recognise because many symptoms, such as headache, vomiting or changes in behaviour, are also common in everyday childhood illnesses.

“Rather than focusing on a single symptom, we are encouraging parents and carers to look out for patterns of change in their child’s health that may need investigating.

“Parents know their child better than anyone. Our aim is not to cause concern, but to empower families with the knowledge and confidence to recognise when something feels different, speak to a healthcare professional when needed, and support earlier diagnosis that can improve outcomes for children with cancer.

“If symptoms don’t go away after two weeks or something doesn’t feel right, trust your instincts and see a doctor.”

CCLG: The Children & Young People’s Cancer Association is raising awareness through its Child Cancer Smart Campaign, a health awareness campaign designed to help parents, children and teenagers, young adults, and healthcare professionals recognise the early signs of cancer.