Thanks to a message left by someone following my post about my visit to the hospital, I spent part of yesterday, doing some research. I have to admit, that I hadn’t given the slightest thought into acquiring a home oxygen system from anywhere else other than the NHS. I am not sure where I had come up with the idea, that they were the only source of the required equipment. I think, it was from a site I turned to for information on COPD, or, it might have been a blog I read a couple of years ago. Either way, I hadn’t thought any further than that. I guess it also had something to do with the old fashioned systems I had seen, where you needed to have bottled oxygen in the house. Clearly, these days there are concentrators, they work exactly as they say, compressing oxygen from the air in the room, with no need for dangerous bottled gasses. My research also confirmed exactly what I suspected about that rule of the NHS, if you’re a smoker, you can die, we won’t give you oxygen. Yes, it is that cruel and that blunt.
There is no more danger from cigarettes, than there is if your home, is heated by gas, or if you have a gas cooker. The safety advice is identical, don’t use it near any open flame, or, in fact, even an e-cig due to the battery inside it, yes, even battery operated items can be a problem. If the NHS supply your system, they also give you a cylinder of oxygen, just in case, there is a power cut, or your machine breaks down, but this too, can be bought without a prescription. You don’t have to get any of it from the NHS and you don’t have to just sit and die. To be fair to the NHS, I doubt if there are a group of evil people sitting there rubbing their hands as the find another way to make people suffer. I am sure it is down to an obsessive view of safety, as should their equipment destroy a home and kill people, well the press response would be devastating. There is probably also a dash of health in there as well, an arm twister to get people to stop smoking, somewhat stupid as the damage is clearly already done. I did in the back of my mind, sort of have an idea, that there would be a way around it, it was just finding it.
Clearly, I still have a lot of research to do. The prices vary, from as little as a couple of hundred pounds, right up to three thousand pounds. I know without even looking, that the price stands for nothing. The most expensive isn’t always the most reliable, safest or most efficient, but as I don’t need it at this second, we have time to work on this one. I have to admit that when I found that they were available to buy off Ebay, it sort of put the whole arm twisting status of the NHS into the position of just looking incredibly silly. Finding them there, though, has provided one thing that I am so looking forwards to saying, should I find myself, in front of they same doctor, as the one I saw this week. I will take great pleasure when he says again, “but of course, you can’t have one because you smoke” my answer will just be, “it’s OK, I’ll just buy one off Ebay when I need it”. I suspect, that it will produce the second moment of dumbfounded silence, I wonder what I can find to produce the third.
It really is far too easy to just take your doctors words as those of god. This isn’t, and I am sure won’t be, the last time that I have taken them and thrown them back at them. If the truth is told, I am sure that it is for that reason, that doctors hate their patients going online, far more than just because some self-diagnose. We now have such a huge reservoir of information, a lot of it written by their peers, that we really can check everything and look for other options, if that is what we choose to do with our time. To me, I prefer to use it this way. Not as a medical research tool to find what they don’t know, but more as one to check what they do. I chose a long time ago, to trust conventional medicine, as in, I want nothing to do with alternative medicine. This doesn’t mean that my trust is blind or even blinkered.
When my Neuro suggested, that I might be suitable for a form of treatment, not usually used in the UK, but he couldn’t guarantee, that it would be successful for treating PRMS, I didn’t take his word alone for it. I immediately came home and checked out as much as I could about what this form of Chemo would mean for me. Mitoxantrone is still not licensed for the treatment of MS in the UK, at the time, the information was really hard to find. I landed up, plowing through medical trials from the USA and decided to go ahead with it. What he had told me, matched just what I had read. His knowledge matched and I, therefore, had no doubt about having the treatment, For me, it was a miracle drug. It really did stop my MS dead and my body recovered wonderfully over the 3 years I was on it. When stopped, it started to progress again. If, I had found holes in what he had told me, I would have taken a lot more convincing, before I went ahead, or possibly not.
The internet has removed the pedestal, that doctors use to stand on. They are no longer, the only source of knowledge, and that has in turn removed some of their once perceived power. It must be hard for any profession to have themselves reduced in this way, and it is something that is only going to get worse for them. It won’t be in my lifetime, but their purpose and usefulness will diminish as computers and robotics improve. Right now, though, we are all in the position where making decisions about our treatment, isn’t any longer about blind faith, or educated guesses. Whether they like it or not, the power is moving into our hands, and we are mad if we don’t use it. I choose to still let them make the diagnosis and to suggest the course of treatment. I don’t have the energy, or the inclination to spend my time, doing their job, for them, but if I can wrong foot them, or have a little fun that makes them wonder, well why not. The relationships that we have with our GP’s is totally different to those we have with consultants. With our GP’s we have years of getting to know each other. They know our intelligence level, our sense of humor and our attitude, to so much more than just our health. Our relationships with our consultants are very different. They are far more fleeting. Unless we spend some time as an inpatient, we generally see them for a few minutes, once or twice a year, or less, as you often don’t see the same one. If we are to get the best out of them, we have to be prepared, not just with medical information, but with ways of showing them who we are as people.
When I wrong footed that consultant on Monday, I know, that his opinion of me changed. If I see him in four months time, I am now prepared to do it again. I expect, that from that point on, he will look at trying to treat me, rather than trying to scare me.
Please read my blog from 2 years ago today – 12/11/2013 – Searching for facts
Two Rooms Plus Utilities 