What’s your postcode and what does that say about you? If I asked a healthy person about the importance of their postcode I suspect they’d tell me about local schools, crime rates and jobs. If I asked a stage 4 cancer patient, their postcode has a very different meaning. It can literally mean the difference between life and death.
Now of course you should never ever share your postcode on public platforms like blogs. Doing so can lead to unpleasant consequences like identity theft. But for the purposes of this blog I will ignore that sensible advice and reveal my postcode starts GL. Yep I live in Gloucestershire! That means my local oncology unit is in Cheltenham.
Cheltenham is a decent unit. Far too small for the number of patients, but decent enough. Some really nice staff – especially the receptionists. But not much in the way of clinical trials and research. Well not if you’re me anyway. A quick look at the Cancer Research UK trial website shows 16 trials, nearly all for anal, blood and lung cancers. Now those are important trials but not much cop if you have secondary breast cancer. Cheltenham has secondary breast cancer patients. They’ve even recruited a secondary breast cancer nurse who is amazing (to put it mildly). So there are quite a few of us, but clearly we aren’t deserving enough to get a local clinical trial for our killer disease.
Now clinical trials are important when you have stage 4. They can be the only thing standing between patients and death or between patients and quality of life destroying treatments. So not having any trials at my local oncology unit is a blow. But never mind I can travel 3-4 hours each way to reach either the Royal Marsden, Cambridge or the Christie in Manchester as they all have secondary breast cancer trials! Lucky me!
Luckily I have a well paid job with special paid leave for medical appointments. I have a nice car and a husband who is able to drive me across the country at a moment’s notice. If I didn’t have those things I’d have a problem. But luckily I can overcome my postcode. I guess those who can’t just die quicker as they are stuck with standard treatments at their local oncology unit.
Here’s where I try and think of a solution instead of just moaning about the problem. And guess what I have some ideas (come on you knew I would!). Well it is World Cancer Research Day!
Cancer Research UK and other research groups could work to try and evenly distribute trials across the country by cancer type. This is so somebody like me with the very common disease of breast cancer (seriously 1 in 8 women at least will get it) and with the most common subtype (ie ER+) will have a trial within 100 miles of their home. I mean I live in Gloucestershire, not the Outer Hebrides! Finding a hospital near me with suitable trials should be possible surely?!
Macmillan could fund travel grants for patients regardless of income so people don’t have to figure out how to pay for accessing a trial. Or even if they can afford it what the consequences might be. I can tell you from experience that knowing every penny I spend on trying to extend my life is depriving my husband of financial support after my inevitable death, really really sucks big time. I can’t even imagine choosing between trial travel costs and food.
A really radical option is that the drug companies cough up (although to be fair they pay expenses for some trials). We are after all literally doing research for them 24/7/365 while on a trial of their drug. So why not pay us the minimum wage for all hours worked?!
When they do pay expenses, they should pay them up front. Not everyone can afford an overnight stay in London for trial tests lasting 24 hours (my fate if I get on the trial I’m going for).
Or the NHS could do more for stage 4 and just foot the bill! I’m sure if they looked hard they could find some money. After all my own oncology unit charity has invested heavily in sky ceilings and plants. Clearly all serious funding needs are met – be careful around those flying piggies! Seriously I don’t care if I’m treated in a barn – I’d just love to get state of the art new treatments in Gloucestershire. 7 hours travelling for a blood test and pills is going to be tough if I even get accepted on the clinical trial I’m applying for, but I’ll do it!
But I shouldn’t worry. My oncologist at Cheltenham was quick to reassure me that if I didn’t get on the trial or when the trial failed that she would be there waiting for me. Her and IV chemo. Plus a PICC line (even though I want a port instead, but that isn’t offered by standard in my postcode).
So yippee! As I’ve been told the postcode lottery is a myth. Seriously beware of flying piggies!