“Doctor knows best” could harm you – or worse…

I didn’t send my last letter to my GP, and have deleted it as it’s no longer relevant, because I eventually got a reply to my previous one. Bizarrely, it was tucked inside a meds delivery from the pharmacy yesterday – a stupid place to put it as I almost binned it without even knowing it was there.

Anyway, I got my 6 months of Hydrocortisone, so that’s one problem out of the way. The two-part injectable was ignored, but I’ll pursue that another day.

So, a success but, you know, it really should not

have to be so fucking hard!

The guidelines exist for the benefit of both the patient and prescribing doctor, so that the former knows what to expect, and the latter knows what’s expected of him, or her. With fewer than 8,500 Addison’s patients in the UK there are bound to be GPs who have never encountered it outside of med-school theory, which is why I sent my GP the links to all the information that he needed and that I already had – which, initially, he chose to ignore.

And let’s make no mistake here. Although the cretinous consultant didn’t tell me about my diagnosis in March 2013, he did, in fact, tell my GP in my discharge notes 6 weeks later – and he missed it. OK, he says it wasn’t obvious, and from his description, that’s true but, hell, it was THERE, obvious or not. He should have been on the lookout for anything out of the ordinary – FFS, I almost died, so it was clear something untoward was going on!  After all, he found it when I asked him to confirm what I already knew – that I had Addison’s.

I will always challenge a doctor I think is in the wrong, as I have done in these letters. And I don’t care what rank they are. It doesn’t make me popular but I might just live longer as a result. However, I know from experience that I’m very much in a minority, and most people would never dream of arguing with a doctor. So how many, I wonder, die as a result of that reluctance?

As I’ve said many times in this blog and elsewhere, if you are chronically sick you owe it to yourself to know at least as much as, and preferably more than, your doctors do about your condition. Today, thanks to the Web, that’s easy, and let’s face it, you have more time for research than your GP for sure, and probably than your consultants too. When I was young it was bloody hard work. It meant hitting the books and the medical journals in the reference library at least one a month, and making copious notes the hard way – photocopiers had yet to arrive. Now you can get all the information you need for the cost of a few mouse clicks and a few minutes copying and pasting from Web to word processor. Or downloading PDFs.

You’d think doctors would appreciate this, allowing them, as it does, to discuss treatment on an equal footing with you, and not have to keep stopping to explain – but I’ve only ever met one that did. The rest seem to feel either threatened, or contemptuous** – I can’t possibly know what they know because they have a degree! Well, bullshit! A degree is little more than a test of memory.

**Discussing COPD with a young dermatologist a few months ago, I was firmly told that I could not possibly have COPD as I’ve never smoked. I said “Rubbish!” which I thought was very restrained under the circumstances, whereupon she came over all uppity and informed me that she knew it was so as she’d taken exams! Probably failed them too, because while smoking can, and does, cause COPD it is by no means the only cause. There’s a current ad campaign that says as much. Still, I hope she stays with dermatology and well away from thoracic medicine, because she’ll be in for a hell of a shock if she doesn’t.

Anyway, it doesn’t matter whether your doctors approve of your knowledge, or even whether they know about it – the important thing is that you have the knowledge, and know when things are going to hell in a handbasket and – vitally important – have the will to intervene.

There is no place for doctor knows best in the 21st century.


5 thoughts on ““Doctor knows best” could harm you – or worse…

  1. Yes my GP will not listen about published scientific papers about under active Thyroid needing a full set of tests, not just the one and still getting all symptoms so threat to life even with the normal medication.

    The English and Celt have a culture where doctor knows best and the older you are, the more likely that view is entrenched. But what about people who are not computer literate or well educated enough to read scientific works, even if put into plain English?

    Patients and family carers of patients are hitting up against doctors who think they know everything, when that is impossible with the mass of new research. And also they are not suffering the illness, which has personal differences from one sufferer to another, because we have this fact that having one illness and/or disability, does not mean we do not get further one or more, that impacts on each other in combination.

    But some people are learning to use the internet and this maybe a future trend with the youngest generation, hopefully.

    See if you lose most or all of your state pension:

    • Well, two things – three in fact. I am “the older you are”! – I’ll be 70 this year, if I live, which is by no means certain (and if I start stopping people in Sainsbury’s to tell them how old I am, shoot me!); I’m computer literate and wrote a magazine column for the ME Association on the subject; and I’ve been self-medicating my under-active thyroid for 12 years.

      The problem is that thyroid function is assessed on a sliding scale. In the UK, if you’re on the scale – even if clinging to the bottom by your fingernails – you’re “normal” and you get no meds. In the US, in contrast, they believe that the higher up the scale, the better. A bit simplistic, as you could tip over from hypo to hyper without care, but aiming for the mid point is a good idea.

      Oh, and I was an adult literacy tutor 25 years ago, so I know more than most about illiteracy, which is very high in my area. And almost every student said the same thing “I wish I’d paid more attention at school!” Which I found gratifying as it’s just too easy to blame the teachers. You simply can’t teach kids who don’t want to learn, nor can you motivate them if they have no interest – there simply aren’t the resources or the time.

      Age is no barrier to computer literacy – lack of intelligence can be, but the absence of the will to learn is, I think, more serious, especially with my generation, and I’ll never understand it. As far as I’m concerned, life is one long learning curve, and it never stops.

      And of late it’s accelerated, with the proliferation of tablets (I have an iPad 3, several Android tabs, a Windows Surface RT (a whole bunch of Kindles), and a laptop, but for serious work give me a desktop machine every time, backed up to external HDDs – the one aspect of new technology I want no part of is the Cloud – it’s too far out of my control).

      It’s a fact of life, though, that many people not only can’t use computers, or the Web, they have absolutely no desire to do either, just as there are people who take pride in not reading. A friend, years ago, was proud of the fact that he’d actually read a book. Just the one. Where did he work? The library service! He wasn’t stupid, or illiterate – he simply had no interest. I own close to 3,000 books and in my time have borrowed around 14,000 library books – I could no more not read than I could not breathe.

      One doesn’t have to be computer literate to study the medical journals, though. When I was young there were no computers, I had to do it the hard way, hitting the reference library after a day’s work, checking for new stuff (they are obliged to get any publications that are requested – it can take a while, but they’ll come). And, of course, that’s still perfectly possible.

      Recently, though, it took me just an afternoon to download everything about Addison’s Disease that I considered relevant (most of which I sent my GP links to), and set up notifications for new research as it’s published – all very much easier than shuffling paper.

      By the way, re thyroid treatment, the best thing to send your GP is a copy of the NICE guidelines rather than research papers.Start here http://cks.nice.org.uk/hypothyroidism#!topicsummary and click your way through the grey index, copying and pasting to Word as you go. Tedious, but worth it. It’s what I did for Addison’s. (Well, I actually sent him links as I’m housebound, but had I been able I’d have printed it out and delivered it.)

      As for people who are functionally illiterate and/or computer illiterate, free help is available for both – ask at the library (libraries run computer courses, and they’ll have info about remedial literacy courses too).

      And for the impact of multiple conditions, my last post is worth a look

  2. Just discovered you Ron and I have to say you truly are remarkable .. Your ability to turn your nightmare health problems and the shoddy care you receive into an epic read is mind blowing… Your fight and tenacious personality is a trait we all should aspire to. .. kudos to you 🙂

Comments are closed.