Give me a second I, I need to get my story straight...

I've been agonising over this post for weeks now primarily because I needed to get my fuzzy brain into gear and able to put down what I really think about the subject but also because I know it closely affects people that I care about.

You see I'm going to write a bit about a friend of quite a few of the people that I went to school with who unfortunately died as a result of secondary complications after a kidney transplant. She unfortunately developed skin Cancer which was misdiagnosed by GP's and the overall feeling is that she wasn't given adequate information to give 'informed consent' prior to her transplant. You can read more about it

here

Now what you may ask am I doing getting involved in something that is so emotive and you'd be right to do so. Well the reason for it is two-fold. Firstly I have to say that it is entirely at odds with my own experience of two transplant procedures (bone marrow and double lung) where I have been given nothing short of mountains of documentation and consultations detailing the risks of what I was to (or in the case of the lung op am hopefully about to) undertake, whether they be the immediate risks of operations or the long term risks of the mind boggling radiation levels I was exposing myself to, and the short and long term risks of the drug regime I would need to be on to suppress my immune system post transplant. In fact in my first meeting with my main consultant who took me through the whole process I was told eight times in a half hour consultation of how my treatment for the bone marrow transplant could kill me. To say I was given informed consent is to massively underestimate just how well drilled I was. The crucial point relating to the above case is that I was told expressly that both the radiotherapy and the immunosuppressant drug Cyclosporin that I would have to take would massively increase my chances of developing skin Cancer later in life. These things of course are relative because even massively multiplying the chances of developing skin Cancer by the normal prevalence in the population statistically leaves a relatively small risk. So Shaz was really, desperately unlucky to contract it.

That brings me to my second point - you are told of many such risks (like I said 8 different ways to die) but it is my experience that even armed with this knowledge that patients deal first and foremost with the thing that categorically is going to kill them and then worry about the statistical likelihood of developing other conditions based on your treatment should they present themselves in the future. So I get to wondering whether in the above case if they were in fact better informed of the risks associated with Cyclosporin (which is after all a group 1 carcinogen) would they have still opted to go ahead with her transplant? My own experience coupled with the dozens of other patients I know who have undergone transplants is that she would have gone ahead with it even accounting for the risks. Of course she may not have, and been the exception - I don't wish to speak on behalf of anyone, especially not someone with no option to correct me if I'm wrong. After all like I said earlier transplant patients are nothing but pragmatic and do tend to focus on the tangible threat in front of them and will only worry about the long term implications if they actually have a long term to even worry about.

All of this though is to miss the point entirely. My experience is palpably different from that of Shaz. She didn't receive all the information I did and I wonder why that is. Part of me wonders if it is down to just how tenacious I was when I was first diagnosed where I was constantly asking questions of the transplant staff coupled with them knowing I had a degree in Medicinal Chemistry so they were prepared to talk to me at length about what the treatments did. I also knew a fair bit off my own back from having studied anti-cancer drugs as part of my degree and have amongst my friends a pharmacist and a doctor who were always available to answer any questions I wanted clarification on. Most patients don't have that background or are fortunate enough to have friends that are able to help as much as mine though and so rely entirely on what their doctor tells them and here is the crux of this case. Shaz was desperately let down by her primary carers and by the doctors who didn't recognise a lesion as being skin Cancer even though her medical history should have set alarm bells ringing loudly.

And so to my conclusion. Even though it doesn't relate to my own experience I am firmly behind the campaign by Shaz's family to ensure that absolutely no patient is left without the power to give INFORMED consent for their own treatments.

I hope that everyone understands what I just wrote and gets just why I have really struggled to compose my thoughts about it. 

P