How HeadSmart began
The idea behind the HeadSmart campaign (originally called Brain Pathways) grew from the concerns of families and healthcare professionals about the prolonged time it was taking for children and young people with a brain tumour to be diagnosed. This included Neil and Angela Dickson, founders of The Brain Tumour Charity (formerly Samantha Dickson Brain Tumour Trust), whose daughter Samantha died from a brain tumour at the age of 16:
"Having taken 9 months for our own daughter to be diagnosed with a brain tumour, and receiving many calls from parents who experienced similar delays, we have felt for some time that more should be done to reduce the time taken for a diagnosis."
You can see hear and read about some of the stories of people affected by these issues in the 'Our Stories' section of the website.
Evidence suggests that children and young people in the UK with a brain tumour may take longer to be diagnosed than children in other parts of Europe and in North America. A prolonged time to diagnosis can be associated with long term cognitive, visual and health problems in children and young people diagnosed with a brain tumour.
In 2007 the 'Diagnosis of Brain Tumours in Children' guideline was produced by the Children’s Brain Tumour Research Centre (CBTRC) in Nottingham, with funding from the Big Lottery Fund in conjunction with The Brain Tumour Charity. It advises healthcare professionals on the identification, assessment and investigation of children presenting with symptoms and signs that could be caused by a brain tumour. In 2008 the guideline was appraised and endorsed by the Royal College of Paediatrics and Child Health (RCPCH) and in 2011 it received NICE NHS Evidence accreditation. The Accreditation Mark is a recognised sign of high quality processes used to produce guidance and advice and, as such, gives users confidence in knowing that the information is produced to a high standard
Following the development of the guideline, it was agreed that a campaign, based on the guideline, was needed to raise awareness of the signs and symptoms. As a result, a four-way partnership developed between the CBTRC (University of Nottingham), The Brain Tumour Charity, RCPCH and The Health Foundation. Funding was provided by the Health Foundation and The Brain Tumour Charity. Brain Pathways was also renamed as HeadSmart.