Thank you for your advocacy Dr. Shepherd, but I don't see how this will have much effect on policy...I sent this letter to the Times, apparently it wasn't well-written or topical enough to be published, but I think it outlines the problems for patients like me reasonably well:
Sir, I am one of a significant number of patients who have been written off by the NHS. I have been unemployed since I fell ill in 2013. I would like to work and to contribute to this society, but at present my condition makes this very difficult. If I recover to any substantial extent, I would like to do a Master's in Chinese, and then teach this language to students in this country. One of the first things that I have to consider when planning for the future is how I am going to cover the cost of my future health care. I can not rely on being a British citizen and being eligible for health care on the NHS since I have not been able to rely on them so far.
At this point I should say a little about my condition. I have a chronic infection caused by a organism that is present everywhere in the world, and which occasionally makes the news with a new outbreak (as there was in New Zealand in 2014). The name of the organism is Yersinia Enterocolitica. In some patients the infection resolves quickly, without the need for antibiotics; in others it lasts for years. Reactive Arthritis and liver disease are the two most prominent manifestations of chronic Yersiniosis. I have raised liver enzymes, and also subclinical enthesitis, so I am naturally concerned when I read that the mortality rate in cases of serious liver disease is around 50%, or that in some cases Reactive Arthritis can develop into inflammatory axial arthritis. I have raised these concerns with my GP and he recognises them as valid, but tells me that there is little he can do for me. I recently contacted one of the few Yersinia researchers in the country to confirm that this was indeed the case, and was surprised to hear that they did not know of anyone who treats this disease in the UK.
So my dilemma, if I recover to the point where I can work again, is this: should I work in this country and pay taxes, some of which go to a health system that seems unequipped to help me? Or should I seek both health care (as I am currently doing at my own expense) and a future career abroad, where my national insurance contributions might actually go towards paying for my health care? I am not the only one who has been presented with such a dilemma. The problem for patients like myself is that there is little prospect of the situation changing in the future. This is due to two factors: 1.), in a socialist healthcare system such as the NHS, there is only so much money to go round, and decisions have to be made about where this money is best spent, which inevitably results in little or no funding for relatively uncommon diseases such as mine ; 2.) because of the first-past-the-post system, there is little chance this country will adopt a healthcare system like that of other European countries, since all the main parties (those that actually stand a chance of being asked to from a Government) have declared that they are for the status quo. i.e. keeping the NHS. If this is what the majority of British voters want, then this is what should happen; it is not fair though that people who do not want this should not have any plausible candidates to represent them.
This is only partly a result of the current electoral system; it is also a result of the way the media covers this issue. When details were released of a UKIP plan to change the healthcare system in this country, the party received such negative coverage in the media in the ensuing days that they quickly came out with a statement reaffirming their commitment to the status quo. In this way, debate is quelled and dissenting voices hushed. This is not how a representative democracy is supposed to function, and it leaves people like me with only one option, that of voting with our feet.
P.S. I deliberately avoided mentioning ME for two reasons. The first is that, even though I have many of the symptoms, I have not received a diagnosis of ME (rather one of the Chronic Yersiniosis). The second reason is that I did not want any response to focus on the problems with diagnosing and treating diseases like ME, but rather on the problems with the systems (health and electoral).
