I read yet again that the BNF are refusing to change treatment guidelines because treatment has to be based on scientific evidence.
How I so wish the BNF and their ilk would put forward the scientific evidence which supports the guidelines they CURRENTLY provide - because I have yet to find it - and that includes asking the BNF for it.
How on earth can they say that new guidelines can only be formulated on scientific evidence when the old guidelines don't have any scientific evidence?
The only scientific evidence they do have is that injections of b12 will reverse serum b12 levels quite easily (reticulocyte counts usually improve after 6 days) - who cares!
Oh, I know, the scientists who, for decades, have been mistaking this neurological condition for a haematological one.
I think also that I would like to come out and say a word in defence of doctors here - If you go onto the BMJ Vitamin b12 Hunt article and check out the CME section - although it only shows a few comments made by doctors, the roll on and roll off, you can clearly see that many doctors are now starting to 'get it.' But the one thing they are asking for is clearer instruction on how to treat in primary care.
What appears to be happening is that although bodies such as NICE, BNF, NEQAS etc have had this information thrust under their noses (unless they've been living under a rock for the past 3 months) they are still sticking with their abstention from responsibility pose.
In short they are leaving doctors with the sticky end!
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Poppet11
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I completely agree with you. My initial reaction on reading the news was the same - where is the scientific evidence to support the current guidance? It appears that there isn't any. With due respect to the work being done by Martyn and the PAS, who is going to fund the research anyway? There isn't enough money in B12 for the major pharmaceutical companies to want to do it and my cynical view is that they have a vested interest in suppressing B12 research anyway as we might discover that B12 is more effective for some conditions than their far more expensive patented drugs.
Well, in respect of, I think it was doctors getting paid to diagnose dementia, it was clearly stated by those within the medical profession that certain individuals within the professional bodies - NICE was mentioned specifically - that they were not without bias because they have too close links with the pharmaceutical industry.
It's also clear to see there is a cyclical argument going on - no research, no change, nobody is doing research. Which I'm thinking now is completely distractionary.
What happened to Duty of Care?
Medical professionals are under a legal obligation to practice effectively. How can they if they can't access information or, if the governing bodies aren't making provision for that information?
It stinks to me that they are, ultimately, going to drop doctors in it. Doctors are the ones that are liable to individual patients.
If institutions such as NICE suddenly garnered research which proved they had been getting it wrong then the doctors themselves have some recourse.
Additionally though, the research that they are demanding really shouldn't be necessary. It would only have been necessary had it been a situation whereby b12 deficiency was a blood condition, neuro symptoms followed, treat the bloods and everything was fine while the bloods were fine.
But that isn't the case.
They had the whole thing back to front.
Any neurological condition demands that different patients require different dosages and treatment regimens. They don't have to prove it! They don't keep asking why other patients who have suffered neuro damage need different treatment regimens, they just treat them!
There is no point in doing research because what are we really trying to prove? That different people suffer differing levels of neuro damage after having a b12 deficiency?
It's like trying to compare milk and diamonds.
The whole problem revolves around the fact that the medical profession thought this was a simple blood condition which was quickly and easily treated. They got it wrong. And everything was set up around the misapprehension.
They've been missing neuro degeneration for decades!
Poppet11 - once again, you hit the proverbial nail on the head. Bravo! With your permission, I'd like to add my own two cents on the topic and suggest a solution
Thanks to the internet and forums like this one, there's now a ray of hope for those who have become (through no fault of their own) their GP's worst nightmare. The patient who can't be "bothered" with "getting a life" or even getting well, because they're too "busy" driving doctors crazy with printouts of medical hypotheses or news of breakthroughs from the internet. Material which DOCTORS should be downloading, studying and implementing!
Until health funds wake up and institute mandatory, paid "study periods" for all doctors , instead of avoiding responsibility with lame excuses like "doctors shouldn't be wasting their time on the internet" - the labor intensive, vital job of data collection will continue to fall on the shoulders of the ones who need it the most, but are least qualified to do it properly: the suffering patient and his family.
I think this is one reason we get ice-cold hostility instead of heart-felt relief and gratitude whenever we try to "educate" doctors. Even if we do meticulous research then have private consultations with specialists to verify our information - no matter how deferential and respectful you are, when you try present it to the doctor or specialist, the knee-jerk reaction is to ignore, dismiss or reject any "helpful advice" out of hand.
It's exceeding rare to find a doctor in any specialty today who respects the opinions of laymen showing up for consultations armed with nothing more than some "dubious", unproven research downloaded from the internet. They do exist. But they're hard to find.
It's up to the health funds to pressure doctors to stay current. We all have our favorite horror stories about mistreatment at the hands of arrogant, opinionated and ignorant doctors (I personally believe that an occasional pull-out-the-stops rant is good for the soul) but when you think about it, doctors aren't the problem. We're pointing our fingers at the wrong villain. We should be getting down on the health funds who dictate how many patients a doctor must "process" per hour, and what else he should be doing in the ten minutes he has to "process" you.
If you think that's obvious, think again!
If anyone is to blame for this sorry state of affairs, it's the policy-makers who run the health-funds (slave-drivers is a better word) who all have their priorities skewed on the side of profit and loss.
If that can't be changed somehow, we're all dead in the water.
Did you know, at least in some parts of the country, that doctors are given a lot of 'study leave?'
I'm not quite sure what they do with it...
I think, if we are relating the subject specifically to b12, the problem was the whole subject was dumbed down because it was seen as being a done deal.
From the top to the bottom they really thought they understood the illness. And I believe that now absolutely.
What is perfectly clear in my mind now is that this is what they thought:
B12 deficiency was a blood condition.
The haematological symptoms came first.
The serum b12 test was 100% accurate and super sensitive.
The neurological symptoms followed the haematological indicators (whether that be serum b12 or anaemia)
The symptoms of b12 deficiency were minor and were mainly those of anaemia ie breathlessness, palpitations etc.
Reverse the b12 blood levels and all the symptoms were reversed and there was no long term issues.
Tie all the above in with the fact that doctors really do believe, as one of mine said, "there is an epidemic of people with emotional problems" and, as you rightly say, we're dead in the water.
But if the GPs were taught what b12 deficiency really means, as the BMJ Hunt study has proven, then they start to take notice. But they will only take notice of their peers - they will not believe the patients with 'emotional problems.'
But now they need guidance. I've seen loads of comments on the CME section which are of doctors asking more questions - where are they supposed to get the answers - from the patients, because NICE and BNF have clearly stated they aren't going to change anything!
In addition to hanging out on patient sites, I've also been noticing a few light-bulb moments among doctors on their own forums lately. Some are starting to notice the yawning chasm between research and implementation.
A few brave souls are asking the "million dollar question": If important discoveries from clinical trials can make front-page headlines in every local newspaper from London to Hawaii in a matter of hours, why does it take so bloody long to replace or update the corresponding treatment guidelines for doctors in the field?
Great question, isn't it? I'm American, so I'll give you a typical Yankee answer: "follow the 'Benjamins' ". Follow the money trail. There's probably a vested interest lurking in the background.
Ooh, how sensible of you to hang around the medical sites - and they are right. Absolutely right. There appears to be an active resistance to updating some medical guidelines and you have to examine why.
I think, you being American, will probably have a greater appreciation when it comes to the pull of money. Many in the UK can't comprehend how ethics and money can clash.
I remember speaking to someone in the US years ago who was explaining to me about the 'mighty dollar.'
If you consider that the BMJ article only really focuses on the poor diagnostics relating to b12 deficiency and gives an obvious disclaimer when it comes to on-going treatment, I was amazed to see one doctor say something like "...it seems we are undertreating neurological damage." That one doctor had clearly read in between the lines and put two and two together - but we can't hang around waiting for all doctors to click on!
I think I saw that comment about the neuro damage. That poor doctor must be looking over his shoulder every second to make sure some mafia hit man isn't looking to nail him for opening his mouth like that (and admitting the truth)!
Regarding "study leave", In Israel many institutions offer a one-time, year-long "sabbatical" study program to doctors, teachers and other members of academia who wish to pursue an additional degree , publish a study or win the Nobel Prize. It's a good thing to do; but once it's over, it's over. I'm talking about a perpetual study program a few times a month, including participation in scheduled discussion forums and graded exams.
As far as doctors are concerned, I can't think of a single downside to a program like this. Doctors will be up to date, they'll have regular, ongoing access to professional peer forums to answer questions, and be able to meet with key members of patient advocacy groups and discuss important issues of patient care in a non-adversarial environment. Doctors, and especially their patients all go home winners.
Of course, the only "losers" are the government agencies who have to foot the bill for a plan like this! It's all about priorities. If raising standards of healthcare and doctor awareness becomes THE NUMBER ONE burning issue to voters, then legislators will make it happen.
If that doesn't work, you take to the streets . But let's not go there yet
It looks like I'm going to have to take to the streets on my own - nobody will notice!
I think you are spot on with regard to the numerous issues. It still takes me a while to comprehend the fact that most research facilities are funded, either directly or indirectly, by the pharmaceutical or related industries.
Keeping people sick is certainly the more profitable.
Any link to what is being discussed here? I've not read anything your all talking about..
The PAS are wanting better diagnostics and treatment.
Back in September there was a UK research study published online in the BMJ called Vitamin b12 deficiency by Hunt et al.
It's caused quite a stir.
The main reasons being that, although it only focuses on the diagnostic problems, it clearly shows that, due to the metabolic processes, b12 deficiency causes DNA changes prior to haematological changes.
That's one of the biggies - because doctors think it is primarily a haematological condition.
Secondly it shows how the serum b12 test is flawed and makes suggestions regarding other tests etc if patients are symptomatic.
The BNF are the British National Formulary and they are one of the bodies who publish guidelines on diagnosing and treating b12 deficiency.
They point blank refuse to amend the guidelines and one of their main reasons is that treatment has to be based on scientific evidence - yet they ignore the scientific evidence.
The other flaw in their argument is that current guidelines are not actually supported by any scientific evidence....
The research paper has caused quite a stir amongst medical professionals and the ones that have read the article are asking for more information on how to diagnose and treat - but the Powers That Be aren't providing that information.
I'm sure you must have read , "Is It B12 Deficiency?" ( or something like that - I haven't read it yet myself, but I'd like to)? The reason I brought it up is because in the author's intro to the book on Amazon, she describes the stubborn resistance she's had to face from the medical establishment in the US to her discovery that B12 deficiency is more widespread and deadly than anyone could have imagined.
And this is coming from a certified hospital nurse - not some quack. If SHE's having a hard time convincing the Powers That Be; then it's safe to assume that a member of the "Great Unwashed" like yours truly, should be prepared to catch hell.
What can I tell you - if someone wants an easy life, he shouldn't be a whistle blower. It's not for the faint of heart!
Thing is, the patients don't realise they are going to catch hell - they aren't whistle blowers - they are patients who are ill and going to see medical professionals who they believe understand their illness. For that they are castigated. For saying they still have symptoms or recurring symptoms they are tarred as being hysterics or being emotionally unstable. Yet all these people are, are ill.
And, although there are several massive issues that are being missed, the biggest of the lot is that b12 deficiency is still being thought of as a blood condition. So on the one hand you get the problem of people needing more frequent injections and on the other you get the question being asked as to why they need more frequent injections. Yet once it is understood that b12 deficiency is not a blood condition but a neurologic condition, the 'why' should go out of the window.
The BMJ article, because it showed the metabolic functions of b12 upfront (in the abstract) is the only published paper to do this and to then go on to show that the serum b12 test is unreliable in it's own right.
Not all doctors are asking questions, but many have started to, and it appears to be because the paper puts the horse back in front of the cart. The paper shows how it is DNA degeneration which can cause blood issues. It is not the blood issues that cause neurological degeneration - which has been the perception for decades.
Once that simple fact drops into place then some of them are realising that the treatment cannot be correct and that patients aren't 'imagining' neuro symptoms.
There are, of course, many other questions they need answering but there is so little understanding of the subject that there is no one to provide those answers.
I agree with your observation that patients expect their doctor to be competent enough to "understand their illness ". The reason that doesn't happen in real life can be explained with an analogy to the automobile business.
If someone hangs out a sign claiming he's a certified Volvo mechanic, we assume he's been trained by Volvo to fix just anything that may go wrong with any model . How can that be? If he graduated his Volvo course 20 years ago how would a mechanic know how to fix a souped-up 2014 model with all the sophisticated electronics and mini computers? Because before Volvo certifies a mechanic , they make darned sure he knows what he's doing.
Before a new model even hits the showrooms , Volvo's mechanics must be intimately familiar with every new doodad and able to troubleshoot anything that could go wrong . Every mechanic is required to stay on top of things. If not, he loses his certification.
What happens in cases where a Volvo mechanic botches a repair to the point where the owner has no choice but to sell the car for scrap metal? The owner sues, their insurance covers the damages and our hapless mechanic gets the boot. Everybody goes home a winner.
Not pleasant, but every large corporation has it's share of screw ups. Volvo is prepared to weather a few lawsuits. That's life.
Now, imagine that instead of one mechanic, suddenly HUNDREDS of Volvo mechanics starting wrecking people's new cars . What would happen to Volvo? They'd get slammed with class action suits from here to Tomorrow and be out of business in short order.
What does all this have to do with the way patients are (mis) treated by their physicians today? To answer that one, I have another story:
When my husband was a kid in the 1960's, his parents decided one day to sell their home in Brooklyn and buy a farm in a one-horse town in upstate New York named Leeds. There was one doctor for the entire area who made house-calls when necessary. He'd drive over and before dealing with the patient, he's spend some time chatting with the family to get a sense of where they're holding in life. Blood tests were around in those days, but this doctor had such a thorough knowledge of his patients and their histories, that he was able to "guess" a diagnosis with 90% accuracy based on just his own judgement and observations.
One night my husband developed an unexplained 104 F fever and became delirious. His Mom frantically called the doctor. After asking the usual questions, the doc noted which lymph nodes were involved, and performed a simple "low tech" validation by cooling off various parts of the body with a piece of ice. His diagnosis was cow pox.
Without further ado, my husband was given antibiotics which the doctor brought along in his bag. Within a few days the fever went down, and after a week my husband was back in school.
That country doctor didn't use "hooglah-booglah" to arrive at his diagnosis. But he did have two things which young doctors turn up their noses at because they are SO old school: he was a skilled diagnostician, and he made it his "life's work" to learn and understand the medical history of his patient together with the extended family.
Compare that kind of medicine with today's "medicine" which is no more than an obsession and over reliance on diagnostic tests and an irrational, superstitious "faith" in the power of published studies (and it doesn't matter which study, anything will do!) .
If my husband had to wait for the results of blood tests and clinical studies before receiving treatment, he would have been in his grave a long time ago.
Although I've purposely avoided using web links so far, there's one which so beautifully illustrates this point, I just had to sneak it in:
Your Volvo analogy is great - but let's take it one step further:
In this case, the case of b12, Volvo would have been giving the mechanics the wrong training.
So, yes, your Volvo analogy is relevant, as is when you were talking about doctors getting study leave - but only if the guys at the top have got it right. And what is now becoming clear is that they hadn't.
Now we have this research paper out in the UK that is 'indicating' to doctors that B12 deficiency isn't actually what they thought it was ... and they are confused. All these symptoms that they believed were 'imaginary' actually tie in with how b12 deficiency progresses - and the majority of the symptoms are neurological. But doctors have been treating a blood condition and the symptoms of a blood condition.
And I absolutely agree with you about observational medicine and your husband's former doctor.
The flaws relative to relying on mechanical medicine can clearly be seen in what's happened with b12 deficiency.
No matter how sick people have become, if their blood levels are normalised, they are declared fit and well (or diagnosed with something else)
Neither did I know the doctor who I was involved with at the start of my illness. He was new, didn't know me from Adam, didn't know my lifestyle or anything about me - yet he drew conclusions. And, if you look at my medical records, ones that were about as far off the mark as you could get.
Even at the time a friend said to me, because I was in such a poor physical condition, "Dr x (our previous doctor) would never have let this happen because he knows you - he would know this is not like you at all and that something is very wrong."
Yet the reliance on mechanical medicine has become paramount - and that reliance is only well founded if a) they do the right tests in the first place (and when it comes to b12 we know they don't) and b) if they understand the falibility of the tests (and they don't get that either).
And, like you say, the world can be blinded by jargon such as in your 'research papers' - who today is ever heard saying, "Actually, I don't understand that..."
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NICE Guidelines re B12 & Haematologist referrals
Guidelines for treatment
GP refusing to listen regarding NICE guidelines for pernicious anaemia
