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Question for the experts - the mods?

Is M.S. notifiable like measles. Do figures exist giving the number of people with m.s. diagnosed each year? Is it roughly the same number each year or have there been ‘good’ years and ‘bad’ ones?

I’m certainly not declaring myself an expert by daring to answer this. However, I do know that no, it’s not notifiable. It doesn’t pose a public health risk, because you can’t pass it on to anybody - and that’s the only reason for anything being “notifiable” (certain types of industrial disease are too, but that’s only for similar reasons - they disclose a wider public health risk). And there are not reliable statistics kept of numbers of MS diagnoses, either. I’ve only ever seen estimates, because there’s no central database, and no obligation on anyone to report numbers.

Although, at first glance, that seems scandalous, I don’t believe there are accurate statistics for most other diseases, either. Do we have any more than ballpark figures for how many people have cancer, diabetes, stroke, or heart disease? I don’t think there’s a master count for any of them. The relevant charities all seem to work with estimates. They might be scientifically derived estimates, and therefore fairly reliable, but they’re still not an actual count.

Tina

Thanks Tina – I think you’re right. You would think that with the technology available it would be possible to keep a tally of people diagnosed with m.s. and indeed with other diseases. It would be useful to know just how many people have been dx’d with m.s. and whether it is on the increase, is it spread evenly across the u.k. ( a Scottish friend with m.s. tells me that pro rata it is not more prevelant in Scotland, it’s just that the medics are on the look out for it there.)

Hmmm, that’s interesting. Everything I’ve ever read says it’s more prevalent north of the border (Scotland) - indeed, I thought Shetland had the highest rates in the world, but maybe that IS a self-perpetuating theory, because medics in areas where it’s higher-profile are more inclined to look for it? I always thought there was some genetic thing, though - for example, I’m sure I read somewhere that people with a surname beginning Mc or Mac (obvious Scots ancestry) were considerably more likely to get MS - even if they didn’t still live in Scotland!

It’s difficult to know, isn’t it, whether it’s still being under-diagnosed in some populations, or really is rarer in those populations?

I think the database thing is a bit of a political hot potato, because every time they (whoever’s in power, not just the present lot) put forward proposals for a centralised health database, or anything like that, privacy campaigners get hot-under-the-collar about the evil uses to which such a system could be put.

I’m got mixed feelings on it, really. As long as it would be anonymised, I wouldn’t have a problem with them holding just the data, so they could perform analysis on it. I wouldn’t be so happy about them holding personal data on named individuals, although I agree it would be great to be able to go to ANY doctor or hospital, and they’d have your file ready to hand, instead of having to relate everything from scratch, as seems to happen at the moment. So far, even consultants at the same hospital, but different departments, have not seemed to have info about what investigations colleagues had done, and what the results were. It was left down to me to try to remember everything, and I’m not sure I always did. :frowning:

Tina