Want medical information? Ask the people who have it – the patients…

Two headlines in Pulse magazine:-

Fewer antibiotics prescribed for RTIs, study finds

and

No antibiotic class stands out in treatment of LRTIs

Access both from the above link if you’re signed up to Pulse.

The thing is, I’ve been arguing both these points for years – antibiotic prescribing for COPD flare-ups or other lung infection (LRTI and RTI), has long been hopelessly inadequate, as I’ve mentioned here to the point of tedium. The second point is self-evident to anyone who suffers from frequent respiratory infections.

I buy Amoxil – for 7 years they’ve taken care of all but 3 or 4 respiratory infections. Prior to that my GP mainly prescribed new and expensive antibiotics, despite my complaints that side-effects were far worse and that I got on better with older drugs – like Amoxyl. So I just gave up and self-medicated. Now I can knock down all but the nastiest COPD flare-ups in 3-4 days, by treating them as soon as the first symptoms appear.

But why does it take research and studies, which cost money, to find this out? Has it never occurred to anybody – at all – to talk to the people at the sharp end, who have the knowledge; the patients?

True, many patients haven’t a clue, but there is, surely, a huge and untapped resource out here, and it’s being ignored.

Over on Wellsphere, for example (see sidebar), I’m a platinum-level COPD Patient Expert** (invited to join because of the quality of my COPD posts, here). I’m not arrogant enough to think I’m unique, there must ne a great many people with a similar, or greater, level of knowledge, in many areas of medicine, yet it remains an untapped resource.

**I can only verify that by posting these two pics, as the Platinum ranking only shows when I’m logged in, and the “PatExp” legend when I’m not – go figure.

An indication that well-informed patients are unwelcome came back in May, when I was barred from posting comments on Pulse, because it was unfair to the doctors. Which is bullshit. A year earlier, I’d had an email from the editor, addressing me as Doctor, asking for permission to publish my comments in the print edition, and could they have my practice details please? If the quality of my comments was so high that I was automatically presumed to be a doctor, and by the editor, who must surely communicate with doctors on a regular basis as part of his job, how could I possibly be unfair to doctors? I’m sure I know why, but modesty forbids!

I think it’s quite simple – the fact that patients are increasingly well-informed worries doctors, not least because they have to raise their game. But it really shouldn’t. Surely it is easier for a doctor to work with an intelligent and well-informed patient, rather than one who understands pretty much nothing? Of course, they’d have to put away their patronising, doctor-knows-best, attitude, which is long past its BBE date, and start treating patients as equals. And that needs to happen, because as things stand right now, a massive reservoir of detailed patient knowledge is simply being ignored.

Any doctors out there, particularly GPs, like to respond to that, pro or anti? Identity must be provided, and will be verified, but confidentiality can be assured if required – just telling me you’re a doctor won’t work. Ad hominem comment will be binned.

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2 thoughts on “Want medical information? Ask the people who have it – the patients…

  1. I was diagnosed without the test that is used for the diagnosis of c.o.pd , its called spiro something , I have blue white and purple inhaylers , to be honest I havent looked up the chemicals in them , I know the blue one is given to everyone with astma , the white one tastes like there is a lot of alchol in it , the purle one I fine odd because it tases of nothing , yet its the only one that has a counter on , so I assume it must contain powerful chemicals ,
    I noted you said about taking the inhalers at exact times ,if I recall correct ,you take yours prior to getting up,
    although these chemicals are designed for the lungs , is it possible with the purple and white inhalers , ineffect set a timer of sorts in your brain , affecting the brain chemistry , nurons etc , i have left them for varing amounts of times and found that they ,seem to stop the heart , via 2 valves on the right hand side , but then its as though the heart is given a jump start , a mild form of like using paddles at a low vaultage , simler to palpatations ,but different.
    what year did they start treating chronic broncitis , and empysema under the c. o.pd name , could these illnesses be a variation of T.b . think i read once started on these inhalers you have a life expectancy of ten years , and it is possible to end up with lung cancer , you mentioned about you having the start of heat failure ,is this caused by the chemicals or just progession of the illness.
    are you alergic to plastics ron thanks and takecare

    • what year did they start treating chronic broncitis , and empysema under the c. o.pd name ,

      Certainly as far back as I can remember – but COPD only applies if you develop emphysema – it’s the defining condition, no emphysema, no COPD. Without emphysema, you have COAD – Chronic Obstructive Airways Disease.

      could these illnesses be a variation of T.b .

      Nope – not even remotely related – TB is a bacterial infection.

      think i read once started on these inhalers you have a life expectancy of ten years

      Total nonsense. Quite the opposite, in fact – I was expected to die by 40. 26 years past and I’m still here.

      Heart failure, by the way, is part of the COPD syndrome.

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