My brain tumour diagnosis has opened my eyes to cancer care
Dr Velamail’s terminal diagnosis kicked him into action as a campaigner, but despite the fact brain tumours kill more people than cervical cancer, his words have fallen on deaf ears
Until 2009 I worked as a GP in Wickersley, Rotherham for over 18 years, until the day I was diagnosed with a brain tumour.
I was diagnosed with Glioblastoma Multiforme (Grade 4 Astrocytoma) of the corpus callosum. This ruled out surgery (open or stereotactic). I have had all the treatment available in this country, and still the tumour remains.
I was 48 at that time. On the day of the diagnosis I gave up work and so did my wife, Sue, so that we could spend more time with each other and with our three children.
Whilst I was having treatment, Sue trawled the Internet for information. She came across Brain Tumour Research (BTR), a registered charity, which was raising awareness and funds for research into cures. They sent us leaflets with four facts which most of the public - and, shockingly, most GPs - are not aware of.
1. More children die from brain tumour than leukaemia or any other cancer.
2. More women under 35 die from brain tumour than breast or any other cancer.
3. More men under 45 die from brain tumour than prostate cancer or any other cancer.
4. More women die from brain tumour than cervical cancer.
Survival rates are much worse compared to other cancer survival rates, but even with all the best will in the world, BTR are not going to be able raise the £7 million required annually to keep its research centres running. There are no celebrities, famous patrons, or national media coverage, and charities do not share resources with one another. Everyone has heard of 'pink ribbon day' but not 'wear a hat day', and the many deaths from brain tumours go largely unreported.
As a GP and a patient, I had insight into how the NHS works. I became determined to use my knowledge of the system to raise awareness of brain tumours and to ensure all my colleagues knew the symptoms.
But I fear to date I have largely hit a brick wall. I was told by BTR soon after my diagnosis that there was an All Party Parliamentary Group on Brain Tumours set up. The aim of this APPG was to raise public awareness of brain tumours. And yet, no one I ask has heard about the problem. In other words, the APPG has not made any impact on the general public.
All GPs in the UK still receive a printed Chief Medical Officer (CMO) bulletin. I e-mailed the CMO, who in turn said she was going to pray for me but wasn't willing to do anything to raise awareness of brain tumours or their common symptoms with GPs. I also e-mailed the Secretary of State for Health Mr Lansley but he is too busy trying to re-shape the NHS, again no-one listened.
At the last APPG meeting in January, which the Secretary of State attended, there was a lot of GP bashing. I tried to defend my profession, saying that GPs need access to the information and access to MRI (with set criteria).
One encouraging initiative was explained at the meeting though, and all GPs need to be aware of this. We were all given ‘Headsmart' cards by David Walker, professor of paediatric oncology at the University of Nottingham.This lists the signs and symptoms of brain tumours in patients aged under 5-years-old, 6-11and 12-18. (Remember brain tumours kill more under 14s than any other cancer).
These are similar to the meningitis cards, meant for use by the general public and health professionals. It was also felt that these cards should also be circulated amongst school children. Like meningitis, early diagnosis of brain tumours in young people can improve a patient's prognosis.
I e-mailed the CMO again about Headsmart but she simply replied that the information I mentioned about brain tumours is already on the NHS Choices website. But I have checked the website and it does not offer the same advice as Headsmart. Furthermore, the website is not a resource for GPs use as a symptom checker.
Meanwhile, I have also been giving out Headsmart cards to some of the local schools and others are also doing the same in their areas. Unfortunately the patchy nature of this campaign will lead to a postcode lottery on early diagnosis, and thus rates of mortality. I sent an e-mail to Mr Gove at the Department for Education, so that all schools may be informed about the campaign, but again the response has been disappointing. The Department advised me to contact each headteacher myself individually.
Politicians at present are not paying attention and those who should advise them do not appreciate the nature of the issue – fortunately, few have experienced anyone close to them suffering from a brain tumour.
I have three children and my eldest son, Matt, and his friend- both keen sailors - raised £11,000 for the charity. But brain tumours are not a popular cause, and fundraisers like Matt's are a once-off. I strongly feel that funding research into cures needs to be government-funded. Given that £7 million a year is a very tiny percentage of UK GDP, and just 0.7% of the total amount spent on cancer research nationally, it makes financial sense.
Dr Vetri Velamail is a retired GP in Rotherham.