HeadSmart is raising national awareness of the common signs and symptoms of a brain tumour in children and young people by equipping parents, the public and healthcare professionals with information they need.
Our goal is to reduce average diagnosis time to four weeks or less in line with NHS targets. Identifying tumours early reduces the chance of a child developing long term disabilities and can ultimately save their life. 62% of children who survive a brain tumour will be left with a life-altering, long-term disability.
Brain tumours are the leading cause of childhood cancer deaths in the UK. Around 500 children and young people in the UK are diagnosed each year and 58% of children aged 0-14 are diagnosed with a high grade brain tumour as an emergency. By raising awareness of the signs and symptoms, the campaign aims to reduce these figures.
The idea behind the HeadSmart 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.- Neil and Angela Dickson
Following this, 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 received NICE NHS Evidence accreditation in 2011. The Accreditation Mark is a recognised sign of high quality processes used to produce guidance and advice, and 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 partnership developed between the CBTRC (University of Nottingham), The Brain Tumour Charity and RCPCH and the HeadSmart campaign began.
Today, HeadSmart is supported by leading organisations including the Royal College of GPs, the Royal College of Ophthalmologists, the College of Emergency Medicine, the Royal College of Radiologists and the Children's Cancer and Leukaemia Group. HeadSmart is endorsed by the RCPCH and the guideline for healthcare professionals has received NHS Evidence accreditation.
Our impact so far
Before the launch of HeadSmart, average diagnosis times for children with brain tumours in the UK was 13 weeks. After publication of the guidelines for healthcare professionals in 2011, this was reduced to 9.1 weeks, most recently this has been reduced down to 6.5 weeks. We will continue to drive change to reduce diagnosis time to under 4 weeks in line with NHS guidelines and other countries around the world.
HeadSmart is an award winning campaign, receiving accolades from the following:
- NHS Innovation Challenge Prize
- Third Sector Excellence Award
- Charity Times Award
- AMRC Science Communications Award
- QiC Excellence in Oncology Award
Who is 'Sam'?
Each of the ten symptoms is represented by a different, easily recognisable, version of Sam. Sam plays an important role in helping parents and teenagers understand the signs and symptoms of a childhood brain tumour.
Sam is called 'Sam' in memory of Samantha Dickson whose parents developed the idea of HeadSmart with Professor David Walker, Paediatric Oncologist and HeadSmart Clinical Lead.