By Dr Lesley Kirkpatrick
Last updated at 12:41 AM on 11th October 2011
When I was diagnosed with cancer, I was devastated — but sure I’d get the best possible treatment.
After 22 years as a GP, I felt strongly that the NHS was unbeatable when it came to major illnesses like this.
But I was wrong. Instead, this wonderful institution I dedicated my life to has let me down — and I am only alive today because I begged and battled for drugs and paid for scans and treatments privately. 'I insisted on an MRI scan, but my consultant said the NHS could only afford to do one without contrast, which is less sensitive than one with contrast,' said Dr Lesley Kirkpatrick
It was September 2006 when this nightmare began.
After I had experienced blurred vision and pinpricks of blue light, tests revealed I had a rare type of eye cancer — choroidal melanoma cancer, a tumour in the blood vessel layer at the back of my eye.
The tumour itself was highly curable with radiation treatment, but because this type of cancer was carried in the blood, I knew there was a strong chance it would travel throughout the body causing more tumours, most likely in the liver. And I knew it was a particularly aggressive form.
How did I know? I’d had three patients with this cancer and all had died from it.
It doesn’t make a difference if you’re a doctor — the moment you are told you have cancer is just mind-blowing.
My husband Terry, who’s a consultant anaesthetist, and I were shown into the comfy room, and we just burst into hysterical laughter from the sheer stress.
My consultant broke the news: I had a one in four chance of dying from metastases, or secondary tumours, within five years. I was 50.
Two weeks after diagnosis, I began four 30-second sessions of proton beam therapy — low-dose radiation accurately focused on the tumour to melt it away.
Dr Lesley Kirkpatrick had a rare type of eye cancer - choroidal melanoma cancer
After it was successfully treated, my local trust in Sheffield — I live in Doncaster —offered me ultrasound scans to check the cancer hadn’t spread. But I knew that these scans pick up only tumours that are 1cm or bigger, and by the time it reached that size it would be harder to treat.
I insisted on an MRI scan, but my consultant said the NHS could only afford to do one without contrast, which is less sensitive than one with contrast. In the year since I was diagnosed I’d thrown myself into researching my cancer, poring over endless journals and learning the statistics by heart.
I knew that patients live an average of 27 months after liver resection, but some could live up to ten years. I was determined to make the most of the life I had left: eight weeks after surgery, Terry and I were diving in Mauritius.
Back at home, I set out to fight this disease. I now needed vigorous scanning and treatments to get the cancer before it came back (for there was now a virtual certainty that it would).
But every onocologist I spoke to told me the NHS wouldn’t pay for such scans, and they couldn’t treat me while I was clinically free of disease.
And when it did come back, they would treat me with dacarbazine, a drug which I discovered had a response rate of under one per cent. I was basically being told to go home and die.
So, for the first time in my life, I went private. I got the results in September 2008 — they were clear. Finally I could start to live again.
But six months later, a second scan showed exactly what I’d feared: a 4mm tumour was growing on my liver.
A third scan in August, this time on the NHS, showed it had grown to 9mm.
If I’d stayed on the NHS and hadn’t had those scans, I’d have been months from death without knowing. Instead, the tumour had been picked up while it was still small enough to be removed with surgery.
However, the news got worse. The soonest the NHS could offer a date for an operation was six weeks away. An aggressive tumour could double in that time. So again I went private and paid £20,000 to have three small tumours removed from my liver.
I’d worked in the NHS all my life — and yes, I felt guilty. But being a patient made me see things differently. I felt alone, uncared for, and forced to make things happen myself.
I became acutely aware of the many patients out there who were suffering as I was, given no options. I confided in my colleagues at the surgery — they understood completely, and said they wouldn’t wait either.
'If I'd stayed on the NHS and hadn't had those scans, I'd have been months from death without knowing,' said Dr Lesley KirkpatrickAs predicted, in September 2010, scans revealed another liver tumour, so I had surgery on the NHS. I was very sick by now, and that month, I retired from my job at the age of 51.
Then, just three months after surgery, another tumour appeared. Soon, there were 17 of them on my liver. I’d kept up my research and got in touch with an NHS consultant, Professor Christian Ottensmeier at Southampton General Hospital. He made me feel human again, and was genuinely committed to finding a way to help me live.
He referred me to an interventional radiologist, Dr Brian Stedman, who talked to me about this amazing new treatment called SIR spheres, where they use radioactive beads to deliver radiation direct to the site of the liver tumours. It was available at only a few UK hospitals — I’d read about it, but I’d never thought I’d be suitable.
This was my last hope. So I paid £26,000 to have it at Spire Southampton Hospital. Amazingly, my PCT later agreed to refund the money for this, and for my earlier private treatment too, simply because I complained persistently.
Meanwhile, my consultant also applied for a drug called ipilimumab I’d discovered with the help of the Lance Armstrong Foundation, a charity set up by the American cyclist who famously beat cancer, which provides support and practical information to cancer patients. Ipilimumab, which is being trialled in the U.S., effectively takes the brakes off the immune system, so it can recognise the cancer and form antibodies to destroy it.
The results have been amazing. One year on, scans are now showing no growth or new lesions, so I’m hoping that ipilimumab and the SIR spheres are working.
I should be dead, but here I am still running 40 miles a week. and it’s all because I fought every step of the way. But I’m struck by the thought — what happens to patients who don’t have my medical training and determination?
NHS rationing is hurting the patients who need it, and the wrong areas are being cut. We have management and ethnicity surveys, while patients are denied proper scanning and fast responses.
If I’d had breast cancer, there would have been a clear care pathway with specialists — yet for patients with rare cancers like mine there isn’t.
They are led to believe they are cured, and slip through the net until suddenly they find they have months to live.
How has our great health service reached the stage where some patients have to fight to stay alive?
ocumeluk.org
Interview: CAROL DAVIS
Read more: http://www.dailymail.co.uk/health/article-2047602/Im-alive-I-know-beat-NHS-system.html
