I did something stupid yesterday. You know one of those things you have promised yourself over and over to never do again, but you do. Thanks to twitter I came across a survey to fill in about MS and our care, it was being run by the University of London and I thought, well why not? I should have stopped there and actually answered the question, I didn’t. If I had thought I would have remembered all the surveys that I had filled in the past. All those pages of annoying questions that bear no resemblance to the real world that I live in. I should have given up on the third question and left it there. But I had answered the easy ones, my age and my sex, the next should have been just as easy. What type of MS do I have? They had supplied a drop down and surprise, surprise, the list didn’t include PRMS. Once again the 5% of us who have this form were totally ignored. The fact it was a British site should have warned me as even some of the British MS sites ignore us as well. It was down hill from then on, the questionnaire had clearly been put together by people who don’t have the condition, but had possibly read a book. They listed drugs as though there were no other options, or that it was even possible that some of us are quite simply untreatable. They also asked questions about symptoms as though they have totally isolated reasons and impact. For example when it came to mobility, they didn’t actually allow for things like weakness, fatigue and pain can affect our mobility, not just our balance. That not all of us can use wheelchairs without assistance and if you don’t live in a house with flat access to the street the NHS won’t give you a powered chair. Almost every question was twee and irrelevant to the real world that the serious end of MS brings with it.

I remembered the first time I filled in such a questionnaire once again I was inspired by the idea that I might be able to help build their picture of the condition. I went in filled with good will and came out wanting to kill someone. On that occasion, I took the time to write an email, filling in the holes they had made and letting them know all that I could tell them. The reply I got back basically said that everything I had added was irrelevant to their study. How can anyone who is looking to help and actually has the condition they are looking at have any irrelevant information, when answering their questions? I was giving them information which fully answered their questions. I can only come to the conclusion that they already had their results in their heads, or worse still already complied and therefore only wanted people who agreed with them to fill in the form. This is something I have come across before, especially with people who are looking for funding for something as they have to fit set criteria. To find that in a period of about 10 years, that nothing has really changed out there, was truly disappointing. It is hard to believe that people working in the field still don’t want to truly understand the condition and it’s real impact on all our lives. Is it any surprise that there are people around the world who are ill and not getting the treatment, support or care that they really need. Anyone who is putting together surveys right now are the very people who will in the next 10 years will be supplying some part of the system and they will be getting it wrong. Sorry if that upset you, but that is the truth as all business models are set up on the back of work like this and unfortunately health is now a business.

In my last job, I was responsible for all the analysis on every area of the company, right down to the actions and results of individuals. I often found myself the hated person in the boardroom, as I didn’t care who’s baby it was that I was tearing apart, I had to tell the truth. You have to be a strong person to sit there and tell everyone that they are getting it wrong. I was in my late 30’s and early 40’s when I was doing that job, I can’t imagine how a university student would feel facing just telling their peers that the structure isn’t covering everyone or even every form of the condition, far less their difficulty in then having to tell their tutors. The flaw in the machine is often found to be in it’s very design and I can see this one is potentially huge and not just affecting studies into MS. It was one of the things that I actually changed in the company that I worked in, I refused to use outside data as a model. People had already fallen into searching online for similar work, then using it as the base to their work. Not one person had thought about it, they justified it as coming from a university, I through it out based on the very same reason. As a company they didn’t even employ people under the age of 25 in any other role than admin, yet here they were using date produced by people even younger. I can see without a doubt that medical companies, be it the NHS or even individual doctors, will use this otherwise expensive to produce data, as the absolute truth, if not fact. That first survey I completed 10 years ago, that I could drive a bus through blindfolded, will without a doubt have been used as a model over and over again.

I personally, don’t trust figures of any sort, if I haven’t seen the data behind them and verified the thought process that led to them being collated, even then I harbour a healthy doubt. All data can be spun, in fact, many people are better at spin than they are at basic arithmetic. I don’t even trust the banded about figure of 5% for the number of people with PRMS. Who produced that number? When so many different medical bodies don’t even seem to believe it exists, how can they say if it is 5% or 10%, or even more? Without a doubt, there are people out there who believe that they have either PPMS or SPMS who, in fact, have PRMS. Right now they are throwing drugs down their throat that will do nothing other than poison their system. They might even themselves not believe they are, working but who are we to argue with those great gods the neuro’s. Tell them, fight with them, not your health and they might just wake up. I find it more than a little worrying to think that my future and the future of others with my condition could come down to a group of people who don’t even know we exist. That is a battle I don’t know how to fight, especially as no one really wants to listen to those who muddy the water. It won’t be until someone high profile developers PRMS and is treated incorrectly that our appearance in the world will even be noticed.

Here in the UK the future of the chronically ill is being changed. Some of the things our government are doing, that even as a disabled person, I agree with, some I don’t and few actually worry me. I rarely talk about politics as they are a personal thing that is easily miss read without the full picture of someone’s life, influences and experiences. It is hard without all the changes intended being laid out in front of us, something that won’t happen for a long time. Right now, though, it looks as though they are working on a “one size fits all” system. After many years of illness, I can say without a doubt, it doesn’t work. It doesn’t even work within one condition, so how could it work from diagnosis to death. I know that right now I could be claiming more financial help than I get, but I don’t need the help it is intended to pay for, so I don’t. To me, just being able to honestly tick the box, isn’t enough. If everyone was that honest, we probably wouldn’t be facing a future where getting anything outside of the “fit all”, will be almost impossible. Or the fact that the “fit all” is going for some to be less than it is right now. It also looks as though unless you have the strength to undergo assessment after assessment, interview after interview and more forms than required to wallpaper your house, that help will not be granted. It sort of feels that they are hoping you will die and they don’t have to give you anything. I could be totally wrong, as I said the full details haven’t been given yet. For all those facing this uncertain future, wondering how on earth the government believe we can exist this way, look no further than that survey you filled in years ago and didn’t complain when you could see that it was clearly flawed.

There is one last problem that surveys supply and is often missed, especially when it comes to health. A year from now, I along with millions of others, probably won’t be well enough to fill in anything other than our beds. We won’t exist at all in their data, nor will our needs and our care requirements. Without any fault in the questions, that fact alone makes all and any result flawed before the first question is even answered.

Please read my blog from 2 years ago – 25/08/2013 – And so it is evening

I am loosing time again today, not minutes here and there but huge chunks of it, how on earth did it get to 10:14 and here I am just starting my daily post! Well there is little I can do about it now, but it is always frustrating to loose time…..