My amateur attempt to emotionally bully politicians, along with a load of other generally important people, into raising awareness and funding for brain tumours by forcing them to listen to my 10 minute speech (where I got to talk about myself a lot) at the recent APPG (All Party Parliamentary Group), at The Houses of Parliament, London. I have to say, I was slightly terrified at the prospect, it was the first time I’d ever done anything like it – I mean talk about chucking yourself in at the deep end! I had to keep pinching my hand to stop myself from getting emotional during the upsetting bits, and I confess I did get a bit watery eyed, but suffice to say the applause at the end would seem to indicate that I bloody nailed it, even if I do say so myself!
Unfortunately I was just putting on some lip balm when they took the photo of the speakers, typical. I like to think it makes me look like I’m constructing some evil plan… to take over London….and then the world…..
“In November 2008, at the age of 27, I was diagnosed with a Pontine Glioma Brain Tumour, an inoperable tumour that to this day remains in just about the most crucial part of my brain stem. Brain stem Gliomas largely affect children and teenagers, 75%of those diagnosed are children and young adults under the age of twenty. The prognosis for young pontine glioma patients is often poor. For those diagnosed with diffuse intrinsic pontine glioma the median survival rate is less than 1 year and less than 20% of young sufferers are still living after 2 years. Locked in syndrome, in which the body and most of the facial muscles are paralysed but consciousness remains, is common amongst pontine glioma patients before death, and can last for months. I will leave you to judge the experience this means for many young sufferers.
This condition is rarely found in adults and, thankfully for me, behaves very differently. My tumour has now been confirmed benign and has not grown since treatment, but every day I hope for a cure, knowing that, if the tumour was to turn malignant, my prognosis would not be positive. In my quest to raise awareness of the need for funding into research and treatment, I am now a volunteer fundraiser and ambassador on behalf of The Brain Tumour Charity.
It took 2-3 years for my GP to refer me for an MRI in order for me to be diagnosed. During that period I attended my doctor countless times complaining of severe, agonising headaches which became progressively worse to the point where I sometimes writhed on the floor in agony. I did my best to live with the headaches and get through a high pressure job by taking excessive amounts of painkillers; at the time this seemed to be my only option. Eventually, after being put on blood pressure tablets in a misguided attempt to deal with the headaches, I was referred for an MRI scan. At diagnosis, given the size of my tumour, the consultant’s comments were that he was impressed that I was still able to walk, let alone work full time in a challenging job. As my tumour is benign, late diagnosis did not, thankfully, affect the prognosis for my particular condition, but my experience highlights concerns about early diagnosis for those with more immediately life threatening tumours.
Recent reports by The Telegraph, The Guardian and the BBC that certain Clinical Commissioning Groups are offering financial incentives to GPs in order to discourage outpatient referral do not fill me with confidence that things are going in the right direction. Surely CCGs should ensure that GP clinical judgment is regarded as acceptable reasoning for referral? I fully support The Brain Tumour Charities recommendation that NHS England should mandate that GPs have direct access to key investigative tests for suspected cancer.
Once diagnosed and referred, things moved fairly quickly and I was admitted to hospital. I cannot fault the dedication of the frontline staff; however, an incident took place that deeply affected my level of trust in the actions and recommendations of senior medical staff.
During my first stay in hospital I was told that I had to have a biopsy to determine the nature of the tumour. I was not given a choice on the issue and was made to feel that this was an imperative part of the treatment. It was made clear to me by medical staff that there were high risks involved, given the tumour location. This included a significant risk of severe disability, and even death. It was only on doing my own research that I found out that, given the fact that my treatment would be the same regardless of tumour type, and the substantial risks involved, many medical practitioners recommended against carrying out a biopsy for Pontine Glioma patients.
On seeing the registrar, I appealed against it, she responded to me in a rather authoritative way and insisted that the biopsy was imperative, as the board would not allow further treatment without it. My answer to her was that, if the Board did not agree, I would continue to appeal against their decision. She was rather put out by my rebellion against the status quo, but then an hour later she returned and rather sheepishly apologised. It turned out that my surgeon (her direct senior) had actually argued against the Board’s verdict but had been overruled, he was apparently overjoyed about my decision! If I had not carried out my own research and appealed, the biopsy would have gone ahead, further to the Board’s ruling. The potential consequences are unthinkable.
I wrote to the hospital to complain, voicing my concerns: Why was I not given the option? Why was I made to feel that this was an essential part of the procedure and there was no choice to opt out? What if I had been a more vulnerable or severely ill patient that had gone along with the advice of the medical team without questioning it?
In response to my complaint letter, I was promised a full response from the Chief Executive, 7 years later I have still not received the response as promised. This experience highlights to me the importance of keeping a patient fully informed, the benefits of shared decision making and the ability of the patient to be an active and equal partner during the treatment process.
As my tumour is inoperable I was treated with 6 weeks of radiotherapy which caused brain damage and, in the years following, led to moderate hearing loss. I now wear hearing aids in an attempt to recover some of the hearing I once had. Knowing the detrimental effects that even mild hearing loss, and Tinnitus, can have on everyday life (for example your ability to socialise and be in successful employment), I watch with fear and trepidation as I see reports that CCGs in some areas are proposing to cut funding for hearing aids, and I wonder how those affected, particularly those no longer capable of full time employment, will find the money to privately fund their own hearing aids.
A week before my diagnosis, I had been offered a promotion to a regional manager position. Suffice to say that the consequent brain damage, caused by the radiotherapy, which includes memory issues, a lesser ability to concentrate, and slower brain processing ability, has put paid to the promising career prospects I once had. I was not offered any form of rehabilitation to learn to deal with the consequences of the brain damage, the only advice I have ever obtained from medical professionals in this regard is to practice online brain training. This only assists to a degree.
Whilst I still have good skills and experience, I have found that many employers do not have the time or the inclination to allow for someone like me to take the time I need to learn new practices and processes. After 2 years of returning to work, I was signed off for stress and I resigned. Since then I have bounced from temporary work to self employment and I am now signed up with Remploy in the hope of finding an employer that will be sympathetic to the fact that it might take me a little longer than most to come to fully understand the role. I feel that if rehabilitation services had been on offer, and I had been assisted in learning to live with my condition, I would not have suffered so severely from the subsequent depression and lack of confidence I suffered as a consequence.
Despite all of this, I very much consider myself one of the luckier ones and I am able to live a high quality of life in comparison to many other brain tumour sufferers.
It was only on joining The Brain Tumour Charity that I learnt how significantly underfunded research into brain tumours is in comparison to most other cancers, and yet, in my view, it is by far the most devastating, affecting a large proportion of children and teenagers.
Whilst survival has doubled across all cancers, changes in survival rates for adults with a brain tumour have improved little compared with other cancers in over 40 years.
Since 1971 there has been an overall increase in survival of less than 10% for people with a high grade brain tumour, one of the poorest improvements across all cancers.
Without an escalation in funding, I firmly believe that there will be a continued increase in inequality for brain tumour patients in terms of efficient diagnosis, treatment and outcome. As I read news reports about a struggling NHS I wonder if things are only going to get worse for brain tumour sufferers before they, hopefully, one day, get better.”