It's a slightly ranty one this week but having spent over 5 hours hanging around waiting for late appointments I've had plenty of time to get riled up.
So here it is...
Lies, damned lies and statistics
Statistics apply to populations and not individuals as both Dr C (my brilliant oncologist) and Ailsa (my brilliant friend from the Beating Bowel Cancer Forum) have reminded me. However statistical knowledge impacts on individuals as well as highlighting why remaining a feisty individual is pretty vital to this whole process.
Recent numbers from the States show that in the best medical facilities, with access to premium healthcare, survival rates for metastatic cancer (advanced or spread to distant organs - all a bit Starship Enterprise) have improved dramatically in the last 15 years. Whereas previously only 6% of people with stage IV cancer survive past 5 years, now thanks to new medicines such as cetuximab and avastin those numbers have increased to closer to 20% with projections of up to 30% for those diagnosed past 2004. All good, and excellent news if like me, you have advanced cancer and that 6% figure has been flashing through your mind every day since 8th August 2012. However not so good if you're poor and black. In fact for these individuals the outcome rates are nowhere near as dramatically improved and this is primarily due to the care they can afford.
So what does this mean for the wonderful NHS where it's all free (unless you're in Scotland in which case it'll be £720 a week for cetuximab, thank you very much). Well in my experience it means you have to be question everything, be prepared to be pushy and unpopular, and you never, ever assume that the ubiquitous 'they' have got it right.
Since cashing in my national insurance contributions in a big and major way last August I have been amazed at the high standard of medical care I have received and by the kindness of some healthcare professionals. I have simultaneously been let down by crappy admin on several occasions and most recently just forgotten about all together.
The examples range from the ridiculous letter where I was referred to as an 'unfortunately 41 woman'. What as opposed to being 'fortunately 40' or 43 or a man? To the district nurse who failed to replace the sterile dressing covering my PICC line ( that leads to my HEART) because she was 'worried that her car wouldn't start'. To forgotten drugs and long trips to out of hours doctors to get them, to no-one turning up on 2 occasions to flush through the PICC line. And it goes on; typos in letters, mistakes that leave me waiting around the hospital for hours, missing sterile dressings from the district nurses and then there's the big one.
Last month I fell out of the health care system all together. I had my scan and waited and waited and waited. Nearly three weeks went by before I called and asked why I didn't have a follow up appointment. 'Oh did they forget to book you one?'. Yes they did. Luckily this isn't a life threatening conditioning or that serious...or that I am not now in constant pain that an earlier start to chemo might have avoided.
Where I am lucky is that I am young (in cancer terms), relatively articulate, happy to be pushy (no shock revelations here), English is my first language and I don't have blind faith in much, and especially not in the admin systems of the NHS. Imagine how a frail, old, frightened, non-english speaking person might navigate this big beast of a system? Would they have questioned the missing dressing? Would they have waited even longer for an appointment? Could they have died waiting? Seriously, how many people die because they wait?
Statistics do not apply to individuals, and they do assess populations but it seems to me that a huge baring on the outcomes recorded in those statistics rests upon the individual's ability to drive the system. This is a sad inditement of a service set up by a post-war government who recognised the importance of individual care. Aneurin Bevan (the quite wonderful founder of the NHS) stated that;
"Not even the apparently enlightened principle of the ‘greatest good for the greatest number’ can excuse indifference to individual suffering. There is no test for progress other than its impact on the individual."
I love the NHS. It's saved my life. I am only here 10 months after diagnosis because we have free at the point of delivery health care. It's brilliant, wonderful and full of some of the most dedicated and kind people you could hope to meet. If you ever think it's a waste of money, you try valuing what an extra year with their mum is worth to my children, my life is to my family - my individuals. But like many a good organisation it has it's flaws and we have to be open enough to address them.
All of us who enter the NHS are individuals and some of our stats get fed into a great statistical machine and churned out into prophecies of doom or hope. What needs to be factored into these numbers and acted upon is how much responsibility patients can/should have to take for their own care. At the moment outcomes are not a true reflection of the scientific application of medicine, but (to some extent) as in the USA instead mirror how much power people are able to exert. For the sick and the vulnerable, already challenged with this most deadly of diseases this could well be a test too far.
For me, it's been a lot of waiting around, in pain and getting a bit worked up.
Anyway. the ranting is over (for now). I'm back on the chemo ward on Friday so there will be more tales of surreal moments from the haze of the chemo infusion to come. And I promise to at least to attempt to be funnier.