THE BLOG

We Must Demand More Funding for Brain Tumour Research

17/04/2016 20:02

sheila hancock

It seems all our lives will be touched by cancer. We hear on the news that over half of us will get cancer at some point in our lifetime; few of us will escape it, if not affecting us directly, but bringing worry and at worst devastation to our families. Fortunately, this bad news is balanced with good. We hear that advances in medical science have increased survival rates dramatically over the last 40 years. Cancer is not the death sentence it once was. But not all cancers are the same, not all cancers have benefited in medical advances. We discovered this when brain cancer hit our family 17 years ago.

Nothing can prepare you for the moment a child who hasn't even started school is diagnosed with a brain tumour. When he was four years old, my grandson, Jack, began having headaches and vomiting, Doctors ran neurological tests, including one for meningitis, but couldn't find any cause. They prescribed painkillers but they had no effect. Eventually my daughter convinced the doctor that there was something serious and Jack was sent for a CAT scan, which found bleeding on the brain, and an MRI scan, which revealed the brain tumour.

Our world was rocked by this news and we still faced further uncertainty. Jack had to undergo risky surgery to find out what kind of tumour it was - only then would they know how to treat it. After six hours in surgery, and two weeks of waiting for the pathology reports, we were told that the tumour was a particularly rare one, but they decided on no further treatment. Jack faced five years of regular scans before he was given the all-clear. Each scan was preceded by gut wrenching anxiety, for his mother and me, with Jack growing up under its shadow.

Now 21 years old and doing well at university, Jack is one of the lucky ones. But during that time we met other families going through similar experiences, families whose sons and daughters did not survive. At the time the shock of the diagnosis and the treatment filled our thoughts, but as time went on we started to ask questions. We heard from other families how they had to fight for a diagnosis, that once diagnosed experts knew little about this cancer and how it could be treated effectively. They were sobering times - we were fortunate - but it became clear the odds are stacked against brain tumour patients.

Brain tumours kill more children and adults under the age of 40 than any other cancer... yet over the past decade just 1% of the national spend on cancer research has been allocated to this devastating disease.

This is unacceptable.

Armed with statistics and facts the charity, Brain Tumour Research has used a government e-petition to campaign for increased research funding alongside the family of RAF Officer Stephen Realf who was lost at the age of 26. The e-petition attracted over 120,000 signatures and triggered the first report to be produced by a House of Commons Petitions Committee Inquiry. The report launched on 14 March highlights that successive governments had failed brain tumour patients and their families for decades.

This issue of funding for brain tumour research will now be debated in Parliament on 18 April 2016.

We need as many MPs as possible to join this debate. It's the job of MPs to raise issues of concerns for their constituents - they are accountable to us! I urge everyone reading this to write to their MP demanding their attendance.

My hope from all of this, is that one day the parent of a child diagnosed with a brain tumour, will be met by a consultant who can say, "Research breakthroughs have happened, much is known about the disease, and therefore it can be treated with confidence - if not a cure."

I want all children diagnosed with a brain tumour to be as lucky as Jack. For this to happen we need to see an investment in research, commensurate with other cancers.

Brain Tumour Research's Invest In a Cure manifesto calls on the Government and the larger cancer charities to increase national investment in brain tumour research to between £30m and £35m, in line with other cancers.

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