Reduced diagnosis times for children from 13 to 6.5 weeks
Completed research to identify a set of recognised symptoms in adults which will form the basis of a future awareness campaign
Invested in clinical research to improve the accuracy of diagnosis
HeadSmart raises awareness of the most common signs and symptoms of brain tumours in children and teenagers
Visit the HeadSmart website
Increased parental awareness of HeadSmart has helped to reduce the childhood diagnosis time to 6.5 weeks in 2016, improving the lives of children like Luke Wright
Fay Wright had spent weeks worrying why her six-year-old son Luke wasn’t quite himself. Following the standard tests, the GP had said to bring him back if things didn’t improve or deteriorated.
“I started looking on the internet and very quickly came across the HeadSmart website. The HeadSmart information crystallised everything. It made me think about all of his symptoms differently. It gave me what I needed to go back to the GP and say: ‘I’m really worried.’”
The scan confirmed Fay’s worst fears: Luke had a brain tumour. He was transferred immediately to a specialist unit where three days later neurosurgeons were able to remove the tumour completely.
Luke will have to undergo medical surveillance including scans for the next 20 years. “Luke is a real inspiration,” says Fay. “He’s faced some hurdles since the operation but he takes everything in his stride and is well on the road to recovery.”
Support HeadSmart
Increase parental awareness of HeadSmart from 20 to 25%*
Reduce average diagnosis time for children/young people from 13 to four weeks†
Measure the average adult diagnosis time by 2017 and halve by 2020
of parents are aware of HeadSmart
an average of the diagnosis time for babies (4.1 weeks), children (6.9 weeks) and teens (10.3 weeks) measured in 2018, down from 13 weeks prior to 2015
In 2018, research suggested that diagnosis in adults took less than four weeks, on average. However, this data was skewed by emergency diagnoses. We know many people have a poor and lengthy path to diagnosis so will launch an awareness campaign in 2021
Evidence from INSTINCT – our funded research programme into high-risk paediatric brain tumours – has led to a change in diagnostic practice: every child diagnosed with a brain tumour will receive a molecular diagnosis on the NHS
Improving accuracy of diagnosis is an increasing priority for The Brain Tumour Charity as tailored treatments evolve
Four-year old Alex Hobbs was the first patient in the PNET5 trial, co-funded with Oscar’s Paediatric Brain Tumour Charity
We will use our improved understanding of adult symptoms, and the diagnosis pathway, to raise awareness in a campaign post COVID-19 and measure the impact of that campaign in BRIAN
Teens remain a challenge to reach, with the average diagnosis time still over two months
*Previously increase public awareness from 15 to 30% but changed to parental in 2018. †Previously five weeks, changed in 2018.