125 children a year are dying from brain tumours because the UK is 50 percent slower at diagnosing children's brain tumours than similar countries worldwide.
Sacha Langton-Gilks, whose own son David died as a result of a brain tumour in 2012 has joined the HeadSmart project to raise awareness of the symptoms of brain tumours in children and young people. Today she is meeting with the Department of Health in a bid to further the cause.
In a blog for ITV News, she writes of the importance of the project:
I was first made aware that brain tumours are the biggest killer-illness of our children and young in the UK and the UK was 50 percent slower at diagnosing children's brain tumours than similar countries globally after my son, David, had finished the huge cancer protocol used to treat the commonest cancerous brain tumour in children - a medulloblastoma.
Although he was apparently cancer-free he was not enjoying remission but rather enduring another nine brain operations for brain pressure problems and feeling ghastly. So was the little three-year-old with the same cancer who was following us at our hospital and for the same reasons.
When The Brain Tumour Charity launched the HeadSmart Campaign in 2011 and I first saw the little symptoms card (see below) I felt physically sick as I instantly realised how much more quickly I would have gone to the GP had I seen it and that he probably would have avoided all those extra operations.
From that instant I was determined to get one of the symptoms cards into the hand of every parent in the country.
Sadly David eventually died during the Olympics with spinal tumours and full dementia at the age of 16 but not before standing up in the press to raise awareness of the campaign whilst he was dying.
I cannot move on from his death or the suffering of the other children I have met over the years, until we have achieved the five-week diagnosis time target set by the campaign, which would bring us in line with similar countries.
It would not just cut some of the 125 deaths every year but help prevent some of the six coach loads who are disabled every year by brain tumours, some of them horrendously so.
Today I will be asking the Minister for Public Health, Jane Ellison, to urge county councils to send out a card to every parent in their county via schools and nurseries - all costs and administration covered by The Brain Tumour Charity. This has already been done in four counties and started to cut our diagnosis time.
Then to ensure future parents are kept aware, I will ask that health visitors are made aware of the campaign and that from now on a HeadSmart card should join a Meningitis card in every baby's red book - both illnesses represent the same risk to a child.
Similarly secondary school heads need to be aware it is the biggest killer of their students and our UK teens are currently diagnosed for all cancers more slowly and consequently suffer and die more compared to their counterparts elsewhere.
To address this the Heads can then invite the Teenage Cancer Trust to do their one hour cancer prevention/awareness talk which has proven results over a decade. The latter currently reach about quarter of our secondary schools but clearly we need to do much better and get them in to all of them every year.
These asks can be achieved easily now that the Heads of Public Health for our counties are within the county councils and they meet all the professionals I have mentioned.
We must get our children and young people to the right doctors faster and we can only achieve this with health education.
I am appalled that the UK, with its incredible NHS who cared for David so wonderfully, can have fallen to the bottom of the World Health Organisation's mortality league for the whole of western Europe because child health has not been a priority.
The Minister has a fantastic opportunity to address this today and I pray she does. Then David and the thousands of children and young people like him will not have suffered in vain.
For the HeadSmart app: Text SMART to 81400
Sacha Langton-Gilks views do not necessarily reflects those of ITV News. Find out more about HeadSmart on their website.