Sacha Langton Gilks, lead champion for the brain tumour charity HeadSmart contacted Becky to help increase awareness of brain tumour symptoms during Childhood Cancer Awareness Month.
Sacha lost her 16-year-old son David to a brain tumour in 2012 and is now lead champion for The Brain Tumour Charity’s HeadSmart campaign http://www.headsmart.org.uk/
How common are brain tumours in children?
Every year in the UK, about 500 children and young people are affected by a brain tumour. On average, 130 of those will die. That means brain tumours kill more children in the UK than any other type of cancer.
Of the children who survive, 62 per cent are left with a long-term, life-altering disability.
As a mum who lost her son to a brain tumour, I knew none of these facts before he was diagnosed.
A brain tumour may be low grade (what used to be called ‘benign’) or high grade (malignant or cancerous). In either case, early diagnosis can make a significant difference. If surgery is the best treatment, taking out a tumour the size of a satsuma will obviously cause more damage than removing one the size of a sultana.
What is the HeadSmart Campaign?
HeadSmart was launched in the summer of 2011 to raise awareness of children’s brain tumour symptoms – particularly among parents, healthcare professionals, teachers and young people themselves. The campaign began after researchers found it took 14 weeks on average to diagnose a paediatric brain tumour in the UK – almost three times longer than in many similar countries.
Delays to diagnosis increase the risk of long-term disability among childhood brain tumour survivors and can cost lives.
The symptoms to watch out for
Two symptoms which often crop up together are vomiting (especially first thing in the morning) and persistent headaches. However, these are by no means the only possible signs of a brain tumour. Our pocket-sized HeadSmart symptoms cards – based on those which raise awareness of meningitis – will tell you what to watch out for www.headsmart.org.uk/
If your child has one of these symptoms, take the card to your GP and ask for advice. If your child has two or more of the symptoms on the card, ask for an urgent referral so the right tests can be done.
Is there anything I can do to reduce the risk of my child developing a brain tumour?
At the moment no-one knows why brain tumours develop. Research in this area is lagging behind, although brain tumours kill more children and adults under 40 in the UK than any form of cancer. The Brain Tumour Charity is urgently trying to change this with their five-year strategy Defeating Brain Tumours http://www.thebraintumourcharity.org/about-us/defeating-brain-tumours
The good news
Since the launch of HeadSmart, the average diagnosis time for childhood brain tumours has fallen from more than nine weeks to just under seven. We need to spread the word further to bring that average down to our goal of five weeks.
We know HeadSmart has already helped families to recognise the symptoms of childhood brain tumours. The card has given parents the confidence to seek the help they needed.
My son DD was determined to make sure that other young people would not suffer the battery of treatments that he did because his brain tumour was diagnosed late.
Before he died, he posted a YouTube video to raise awareness of brain tumour symptoms and the HeadSmart campaign, which was picked up by the national and international press [https://www.youtube.com/watch?v=Z_8rBYQLjZw].
DD would be so proud that his work continues to power ahead on social media, and that HeadSmart has won support from public health experts, schools and GPs across the UK.
To help us take HeadSmart further, and to save more lives, please share, share, share this blog and the free symptoms guide on your smart phone: text SMART to 81400
Thank you with all my heart,
Sacha Langton-Gilks, Mum of DD Langton-Gilks and Lead Champion for HeadSmart