Pernicious Anaemia Society
14,226 members10,189 posts

Grievous Guidelines

I wish I had a dollar for every hour I stayed awake till dawn re-arranging and updating my family's encyclopedic medical files in preparation for consultations set months in advance, funded with money we couldn't afford to spend .

Why? Because I naively believed that "specialists" and "professors" were the MD's with the THINKING CAPS. Someone trained to solve problems in unconventional ways. I would come away with precious pearls of wisdom to point us in the right direction.

In reality, my only "takeaway" was a bigger overdraft . No pearls or insights - just the same old "yada, yada".

The good news is, we patients aren't the only ones questioning the sanity of keeping to "guidelines" - no matter what. The following is an enlightening letter written by Drs. Anna Saccardo & Marta Scabardi of the International Renal Research Institute - Italy.

Don't be put off because they're discussing renal failure instead of PA - the "attitude" is the same .


23 Replies

Thanks for that. At least there are a few practitioners who are thinking things through.

I'd just like to point out it tips it's hat at calcium and PTH - my own personal little high horse.

But doctors use these guidelines to beat patients over the head with. 'The Guidelines state' or 'Show me the Guidelines.' It is a world of protectionism that now practices medicine exclusive of patient observation. And all of it, for the doctors at least, is to cover their backs - it isn't to the benefit of the patient, it is for them to be able to stand up in court and say, 'But the guidelines state...'

Doctors, for the most part, love guidelines. They don't have to work or think. They just look at the guidelines and do what they are told.

Yet I've said this before, if you get in touch with the people who make the guidelines they will say, 'Ah, but they are only 'guidelines' your clinician should apply professional judgement.

They constantly pass the buck.

Doctors now have a mind-set in that they have an 'answer' at their fingertips. You only had to see the chaos of the CME section of the BMJ article to get an idea of the confusion which it caused. Drs asking for more clarification, what were they to do about 'borderline' levels (a really stupid question if you read the paper) They were completely thrown. They thought B12 deficiency was a done deal. It was a blood condition and a serum level above X meant the patient was fine and below X meant they were ill. Get the serum level back up above X and all was well and patients who still moaned were nutters - because the guidelines told them this.

Observational medicine out the window. You can have muscles which don't work, eyesight which is blurry, weight-loss, bright red feet and muscle spasms - because on top of the guidelines the doctors can always put these symptoms down to being 'cognitive'

And cognitive only works in a world where doctors are absolutely certain they have all the answers to every single medical condition - because it is of unknown cause.

Doctors have stopped thinking. Somebody else does it for them. And they are happy that way.


Uhmm...sorry to change the subject, Poppet, but what's with your calcium and PTH???


Awfully long, very complicated, haven't got it all sussed yet (though your article may give some leads), they are giving us too much calcium. Your article talks about the high RDA - really.


Rather agree with this:

"We also run the risk of being accused of not provid-ing ‘standard of care’ lest we ignore one or a few guide-lines. This could have legal and licensing ramifications.

Guidelines promote a ‘one-size-fits-all’ approach to care which we regard as the antithesis of good medicine.

Guidelines undermine confidence in the medical profes-sion due to actual and apparent conflicts of interest."


For the patient it is a lose-lose situation because doctors a) think guidelines are absolute, and b) use the guidelines to practice defensive or protectionist medicine.

The legal issue is paramount in medicine and it is restricting medical advancement.

The situation with B12 deficiency should have been solved decades ago. How many hundreds of thousands of patients with B12 deficiency have reported back to the doctor that they still aren't well? How many people with other 'diagnosed' illnesses report that B12 improves their symptoms? But the 'guidelines' had got it all wrong practically from the 1920s. They had been selectively misinterpreting them. Yet there was no way patients could get around it.

How many people have suffered and died because of the 'guidelines' and I do mean suffered, and I do mean died - I don't mean felt fatigued.

Could you possibly imagine what it is like for someone diagnosed with dementia to try and get their voice heard when they say B12 improves their condition? No, no, no, you must let your brain shrink and die. You are stupid because the guidelines say you do not need B12.

Words sometimes forsake me. It has been brutal for me, God only knows about the others...

1 like

I'm sorry you've suffered so. The situation really seems hopeless sometimes.

When you add all the wretched souls rotting in old age homes with "Alzheimer's" (another psuedo disease) together with the millions of homeless "schizophrenics" sleeping in bus stations and howling at the moon or tied to beds in psycho wards; because nobody's "differential" included a simple vitamin deficiency... some days you just want to jump out the window.


I can't even imagine what others are going through.

I find the whole thing bizarre.

I worked from the age of 16 to 50 (and a Saturday job before I left school). I have never been a frequent flyer at the docs. I put myself through Uni as a mature student and then went on to get my teaching certificate - I worked at the same time.

I bought my own home because I worked bluddy hard and never had a holiday.

I get sick, go to the doctors and get treated like I am a retarded bint, who has never worked and who can't string a sentence together (Maybe they had me confused with my sister?)

I've been talked down to by every medical professional I've come across as if I'm a lazy simpleton. I've had neighbours tell me they know about B12 because they have (wait for it) 'researched it on Wikipedia.'

I've had more 'nurses' give their 'professional opinion' than soft Mick. One of them, the most outspoken, hasn't worked for 10 years and is an alcoholic, but she, obviously, has far more validity than little old, simpleton me.

So, if I can get hammered like this, what happens to some of the other poor unsuspecting souls?


What happens to others who can't or won't talk back to white coats, like my son? They go silently into the night...

Keep hammering away at your keyboard, Poppet!! You're articulate and knowledgeable enough to say what needs to be said to the people who need to hear it.

It's a bloody thankless job, I know (a bit like parenting a wacko kid who only gives you grief and won't ever know or appreciate what you've done for him) but take comfort in knowing you're doing exactly what you were given the talent and strength to do. Keep up the good work. If your article helps just one person, it's worth it.


Thank you.

It's not an article. I'd be squirming if it was cos I've just realised there are two grammatical errors in it!

A research team does research and gets to a conclusion. They then have to get that research paper published. To get it published it has to pass peer review - usually other professionals who comment on the accuracy, originality etc etc.

If it ain't right it don't get published - a few years work and funding up the creek.

But now the BMJ are allowing patients to review this research as well. So they give you a research paper and you go through it to establish how it will affect patients, whether it is valid etc. The patient's comments are taken together with the comments of the professional reviewer and the journal uses these to decide whether or not the paper is worthy of publication.

So, all these guidelines that you see are based on peer reviewed research. The patients, in a least one journal, now influence whether or not that research gets published.


Anyway, not that anyone is still up - but I sent my patient peer review in to the BMJ today on a B12 paper.

Well done, me.


Absolutely well done! Didn't know there was such a thing. What is it, exactly?


The BMJ (God bless 'em) have started the practice of involving patients in the peer review of research papers.

So, normally, all research has to be peer reviewed before it can be published by a certain journal or whatever. The journal then looks at the reviews and decides whether to publish it or not.

The BMJ have opened this up to patients/carers who have some experience in particular illnesses.

I signed up, got a research paper to review and sent it in today.

Can't discuss the contents so don't ask. Sorry.

I'd just like to say that the BMJ are really ground-breaking in this. They are giving the patients a voice. Now it may be that if the paper is rejected for publication then that particular voice may never be heard. If the paper doesn't get published, in that particular publication, then the review will never be seen. If it does get passed for publication then they now have an Open policy of publishing the reviews with the paper (they started this in September).

But what matters here is that patients are being given the opportunity, whether unseen or not, to influence research. To point out errors or omissions or particular issues that affect patients.

The BMJ have also confirmed that the patient review is given equal consideration to the professional review. I have no need to disbelieve them in this matter - they have taken somewhat of a risk taking patients on board to review research and ultimately influence publication. I suspect many professionals won't like it. But it is a wonderful thing they have done!


Just the act of letting patients comment is a wonderful step forward. Well done, BMJ.

In the same vein, I read a quote from a doctor recently saying that the problem with Western medicine was that doctors treated symptoms, not the disease. This had the dire result of them being focussed solely on making the symptoms go away and paying no attention to the real cause of the problem and therefore never finding or fixing what was really wrong. I think that's very profound and very true, but try getting a doctor, even a consultant, to think differently. Ain't happening.


I think it goes one step further, Chancery - they treat the blood results. If they get a diagnosis they treat the diagnosis (symptoms) but not the underlying cause.

Modern medicine is in a mess.

I think what the BMJ have done is wonderful - especially if you consider that the patient review carries equal weight to the professional review.

Also, if the BMJ decide to publish the paper, what the reviewers have said about it will also be seen by the readers. So they can see the issues, if there are any, that patients have with the way certain illnesses are diagnosed or how treatments affect them.

I don't think that even I realised the implications of it at the start. But if patients can have input and affect whether a research paper is published or not, then the guidelines for diagnosing and treating illnesses will start to benefit the patients more.


Absolutely. I think this has the potential to have a tremendous knock-on effect, in everything from patients views being seen to be important in the final analysis to it actually producing medicine that has an inbuilt regard for the patient before it even reaches the prescribing stage. That inclusivity alone is worth its weight in gold, and no matter how much the NHS ignores it for the first five, ten or fifteen years, if the BMJ perseveres with it, it will, doubtless, have a trickle-down effect. Most cheering news I've heard in ages.


Well, if they put the actual reviews up as well, it might end up like the BMJ article - that doctors themselves start asking questions while the Powers That Be sit around twiddling their thumbs?

I think that the B12 Hunt et al article really started something. The BNF and NICE and all the rest of them are sat there vomiting out guidelines that now, in many respects, actually don't make sense.

Doctors are coming to realise that they are the ones holding the sticky end. That if they are missing things then their 'guidelines' aren't really going to protect them if things get really nasty.

The problem of course, is going to be the issue that some doctors will not like reading patient reviews - they will not consider it to be 'professional,' and I think this little sector will kick up a storm at some point.

1 like

I know this sounds crazy, but perhaps what you all need is to get together, hire a good lawyer and file a class action suit against the Health Fund???

If you collected about 50 people, each one with his own expert medical opinion stating that their disability was a result of substandard care and "guidelines", the entire country will be on it's feet.


Bringing a class action in the UK is not quite like the US - and not that I know much because I don't, but, it is difficult to do it in the UK not least because it would be against the NHS.

Firstly the system is structured so that in the majority of cases, like in the US, you have to bring a claim against individual general practicitioners - it's not even against the medical practice itself, just the doctor.

Unless it's a hospital and then it's against the Trust the hospital belongs to.

A bigger problem is that people in the UK don't like you to do anything nasty to the NHS, they are very protective of it. They see patients who make claims against the NHS as some kind of parasite. Any time you even mention bringing a claim you will be accused of trying to bring the NHS to its knees. Practicing good medicine doesn't come into it.

And you also have the situation which, if it explains it better, is like all the doctors in one state in the US having the same lawyers. It is a very big and integrated body. It is very powerful.

So, you find it difficult to get one expert to stand up to the NHS and provide expert witness statements. They are frightened to speak out.

It's a very insular country. Very conservative. Somebody told me the other year that the Brits were known for being 'compliant' it sounded very strange being described in that way. But, well, what could I say....

Reply can't expect to knock down a government institution like that in one fell swoop. You chip away at them one little piece at a time. With "precedents". First you win a case in a lower court over a small "technicality". After that, you try for a second little victory and a third.... then go for the whole enchalada. If all of you on this forum are upset with the health fund, chances are the rest of the country is fed up too. Only they're keeping it to themselves-for the same reasons you stated. They're scared.

Your own Edmund Burke wrote, "The only thing necessary for the triumph of evil is for good men to do nothing".

Nu... So what else is new? ;)


Yes, but the trouble is you don't get any back-up to do it.

You have to remember that most people in the UK are running around saying that B12 deficiency is only an anaemia and once that is treated then you don't get neuro symptoms or damage.

And if you say you have you are absolutely MAD.

And the only thing that is dangerous is PA.

It's inherent in our society. It comes from nurses, doctors, experts, family, friends.

None of them look at the evidence, of course and all of them have got half a story and they run with it. And, when they are proven wrong - well, they don't want to look stupid...

Do you know that outside of these boards I've never been asked one question? Not one? People sit there nodding and smiling and thinking what a pratt I am.

For the last 18 months I've been talking to a woman who a while back had a stroke - a minor one.

I've never mentioned her personally but I've tried to explain how a lack of B12 causes a build up of homocysteine and it can cause strokes.

And how B12 deficiency is prevalent in the over 60s - at least 1 in 5 and maybe 1 in 3.

And she has just turned 70.

And I have said this over and over to her. The world's biggest hint.

Has she gone and got her homocysteine levels checked? Has she ever even considered I could be talking about her?

Has she heck - she sits there nodding and smiling and thinking I'm a fool.

You see, she got friends, nurses and stuff like that.

She's patronising the hell out of me and she's the one heading for a land of dribble and fried brain - and does nothing.

That's how inherent blind faith is in experts in the UK.


Has anyone here gone to alternative health practitioners when the conventional system has let them down? There are some great functional holistic doctors out there. The downside is the cost unfortunately.

Here in Australia I can claim on my private insurance for about one third, but it all adds up over time. Desperation was the driving force for me to forego other luxuries in life to be able to finally get some answers.

This is especially true when it comes to gene testing for specific disease precursors. It sounds scary to know you may have a precursor for a neurological disorder, but knowledge is power and, although a gene can't be changed, how it plays out in your body can be prevented with the right nutrition and perhaps supplements to support that weak part of the body.

Genome medicine is just starting to filter down to general practitioners but the majority know little or nothing about it.

Your thoughts???


1 like

In theory it's the way to go, but as you correctly pointed out, "...the downside is the cost." After the conventional specialists let me down I turned to the alternative guys.

Now, I could be wrong about this, but it seemed to me that each "practitioner" had an agenda to promote. Before they take you on, you first have to agree to their outrageously expensive lab tests for "parasites", "worms" and other "hormonal imbalances" and then to relinquish all sugar, wheat and dairy products.

These high-falutin' "health programs" were so far beyond my means financially, I had no choice but to wing it alone.


We have quite a few in the UK - again the cost can be prohibitive - but they do, I believe, provide some patients with B12 which they can't access elsewhere. They can also, in some cases, be used to by-pass general practitioners in providing referral letters for certain tests.

Funnily enough one has contacted me this week wanting to know more about the B12 situation - I'm sat back wondering how to handle it.