Prescription not required

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

I laid out all my tablets this morning while my porridge was in the microwave, I do so enjoy winter mornings as it allows me to eat my all time favourite breakfast, somehow it just isn’t edible in the summer, as it turned in circles I laid….

A Hospital issue

Last night, I climbed into bed, tired and more than ready to sleep. The TV schedule on a Saturday, are constantly shifting, so I was a little later than normal, that, though wasn’t the reason I was so tired. I have been finding the last few days draining. When my mind doesn’t want to shut up and only full on distraction seems to be of any aid at all, my strength fails quickly. Despite going to bed as always in the afternoon, I don’t think I actually slept. I just lay there, with stuff flying in every direction in my head. When I was once more back in the bedroom, ear plugs in place and the last scraps of light blocked out by my mask, I feared that the night was going to mirror my last visit there. When I had been getting ready for bed, almost as soon as I entered the bathroom and distraction vanished, I found myself thinking about the final paragraph of yesterday’s post. I kept wondering if I had written the final sentence correctly. Was it fine as it was, or should I have actually worded it slightly differently, so that it ended with a question mark? Once in bed, I was almost decided that I should change it, as it is a question, will I be able to just accept, or is that more a blind wish. There was a tear running down my cheek, this was the first time in my life, where I was seriously facing my own mortality.

It’s easy to say, we all have to die and to sit and think about when and how ours might happen. That isn’t facing your mortality, that is admitting it, facing it is a totally different thing. Just like that image that appeared, so did that tear, without permission or thought. One tear, not the flood that you might expect, just that one. Tears won’t change the fact, or make it less painful, but it’s not the type of pain that requires them to flow. It was odd, I wasn’t happy about what I saw, or the fact that it is approaching me, but there is an acceptance already there that I don’t actually remember either giving or working on. Tears would be appropriate if someone suddenly put a gun to your head, as that isn’t what any of us expect, our mortality would then be imminent, mine isn’t. It’s still out there in the future, what has changed, is that it is in sight, that’s the only, but a really big change, it now has a tangible reality. Just as I know that the time where I will need more care, someone to come in and assist me to do things that Adam can’t or I don’t want him to, is closing in on me, so is this. Yet, it still feels like yesterday, that I was working, going out every day and living like everyone else. Yesterday, I got angry because my day had run away with me, and there was suddenly not enough time left in the day, to do all I had planned. Adam said something along the lines of “who cares about the hours, it’s the years that worry me”. I corrected him by saying, “No, it’s the hours that matter, the years take care of themselves”. The truth in that statement felt and still feels starkly real, the years will take care of themselves, as I won’t be able to take care of them.

Today, though, is about getting both mentally and physically ready for tomorrow. No, that isn’t some kind of statement that links in with the above, this is something totally different. Once again, I’m on my way to the hospital, at least this time, I have the novelty of visiting a different department, I’m heading for Dermatology. A few weeks ago I wrote a post in which I explained that I had found a mole on my back that was doing something rather odd. I had emailed a photo to my doctor and he doesn’t think that it is anything to be worried about, but that due to the change, it should be checked anyway. So once more, I am heading for the hospital and today, I have to shower, wash my hair, tidy up any that needs removing and generally get ready for being out of my bed an hour early tomorrow, which is when the real fun begins.

To anyone else it wouldn’t be a problem, to someone like me, the whole thing is an unwanted nightmare. The last time I went, I was lucky, I don’t think the Ambulance crew thought so, but I was delighted when there was no stair-climber available. Trust me, being carried in a chair, by four people, up and down six flight of stairs, is a hundred times better than that monster of progress. If you don’t like fairground rides, you too would hate the stair-climber. It’s violent rise and fall action, that pushes your stomach into your mouth, is enough to upset most people, and part of the reason for my early rise. I am lucky enough to have a supply of anti-nausea pills, I have them as nausea is, unfortunately, another symptom of my PRMS, but the tablets do take a little while to work. With the Ambulance possibly here as early as 8 am, I need to be dressed, fed, drug program completed and even my hair and a little makeup added for vanity. Yes, I do have a little of it left. It is going to be a long and tiring day, and like all the rest it is going to take me a few days to get over it, and that is if it all goes to plan. Our unfortunate experience says that it is quite likely going to do anything but. We frequently find ourselves through the doctor side of the day with ease, it is getting transport home again that makes it such a drain. Hours of just waiting, sometimes right into the evening, isn’t uncommon.

I just remembered to plug in two E-cig batteries so they are also charged and ready to go, the first tick off my to-do list. The last two times I have been out, I totally forgot about them. I have had to charge two batteries, not because I think we are going to be out long enough to use one, but because I haven’t used them for ages, I didn’t want to take the chance that one might die. All the hospitals in Scotland, now have a policy that says that you can’t smoke a real cigarette, anywhere within their grounds, not that anyone really pays any attention. Adam is perfectly happy to wheel me outside to where all the other illegal smokers stand, but my nicotines levels dip quite quickly, a side effect of constant availability at home. Here, sat in my home, I don’t need to worry about charging and all that fuss. I use one that works off a USB, so it always works perfectly, but not much use anywhere else. If there is one place that a nicotine addict needs their drug, it is sat waiting and waiting in a hard hospital wheelchair, no, I’m not allowed to take my own. Rules, rules, and more rules. I’m waiting for the day to arrive, when you have to take a test, just to be allowed in their precious property. At least we have managed at last to get them to bring Adam with me in the Ambulance, they have at last accepted I need him with me.

On one level, I fully understand why patients go to see their doctors, rather than the doctor coming to see them, but on another, I don’t get it at all. To get me there and back again will take two, possibly four, if the stair-climber isn’t available again, with between two and four Ambulance crew, twice over at this end. The cost of that alone isn’t cheap. Clearly, if tests need to be done, then the patient must go to them. But a lot of the time, it is a chat without even an examination, which could be done over the phone, and if an examination is needed, then the doctor could actually go to them. The hospital is a ten-minute walk, or more likely, a two-minute drive from my flat. The doctor with a nurse for security, could in one car, be here and back in under 15 minutes. If a patient can get to the hospital, without transport having to be laid on, all is well, but surely it would cost less if they had a monthly list of those who are not able, to which the doctor could be the one making the visit. Especially, if the impact of going out, is detrimental to the patients health. I know that would take joined up thinking, but if it makes sense to me, how come it doesn’t make sense to them? Isn’t it time that the NHS used joined up thinking and started to use things like Skype, to cut down cost and improve patient satisfaction. Yes, you can smash tradition to bits and start again!

Clearly tomorrow I don’t have the slightest clue if I will or won’t have time to write a post. Don’t worry, I will be back on Tuesday if I don’t, just remember where I am and don’t worry about me, I am fine.

Please read my blog from 2 years ago today – 18/10/2013 – Shifting the focus

There are always day when strange thoughts and feeling seem to take over, ill or not, I know that the human mind has a huge capacity to to invent and create things that should never have been there. I have always been that individual…..