According to one of the labs who do one of the tests for B12 deficiency privately - there is absolutely no difference between PA and B12 deficiency apart from the fact that in someone who lacks IF the symptoms 'may' present more quickly.
I have this info in a private email.
One is not more important than the other.
One is not more serious than the other.
One does not cause more injury than the other.
B12 deficient patients who have not attained a diagnosis of PA are no less seriously ill than those who have attained that diagnosis.
And I am also leaving out the equation here that:
a) most people don't even know what constitutes a diagnosis of PA anymore
b) most people don't realise the tests for antibodies are actually dangerous in that they don't allow patients to receive that diagnosis
c) most people don't realise that the IF test will have thrown up a false positive if they had a b12 injection within a fortnight of being tested ie a lot of people are walking around thinking they have PA when they actually don't.
It is the B12 deficiency which causes the damage. The autoimmune causation MAY cause other damage, but with regard to this illness it has always been the lack of b12 which leads to death.
It is not put right simply by putting blood levels back into the normal range.
I think it is about time that B12 patients stopped being treated like the poor relations in this situation.
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I totally agree that B12 deficiency is just as bad as Pernicious Anemia and that both should be taken seriously but often aren't.
However, I sort of doubt there are a lot of people walking around with false positive results. Considering how hard it is to persuade a doctor to give the shots in the first place, and that the test doesn't *always* give a false positive if an injection has been given, it's probable that there are some people who've gotten a false positive but not a large number of people.
I think there are far more people who've gotten false negatives (and I count myself among that crowd).
There definitely needs to be much more accurate testing. Not only for a B12 deficiency, but also for the various possible causes of a deficiency. It feels like I've been tested for every possible cause of B12 deficiency and *all* of the results came back negative. How is that even possible? Obviously there has to be some cause, otherwise there would be no deficiency needing treatment.
Although I've made my peace with it, being in limbo about whether it is PA or not does suck. It took me years to get to the point where I stopped caring about the name of it and focused more on getting the right treatment (which seems to be a battle no matter whether it is PA or B12 deficiency).
I don't care whether it's called PA or B12 deficiency - but I know it affects how a lot of people think.
We get so many threads on this and other forums which are basically versions of:
"Do I have PA or 'just' B12 deficiency?"
There is no 'just' about it, one is as serious as the other and this fact has got to be put across. It's enough to break your heart.
B12 deficiency is not a less severe form of PA. Yet I just read it was on yet another self-confessed 'expert's' blog. I wanted to.... I was fuming.
With the false positives one of the labs I looked at said that they warn if levels are over 800 on the serum B12 (and I think it was pmol) then they tell the doctors that the likelihood is it's a false positive. Most labs aren't even aware.
If you take into consideration some doctors are very good at giving B12 jabs and then doing IFA tests, it could have thrown quite a few.
Besides which, why are they only testing for antibodies? Why aren't they developing a test which establishes whether there is a lack of B12?
If the whole point is that without IF B12 cannot be transported what does the cause of the lack of IF matter?
It's c...-up of the highest order.
I've got a gastro saying that if I've got low stomach acid then the parietal cells aren't producing IF either - whether that be through paralysis of the cells or through gastric atrophy. No IF, no transportation of B12. Simple. Yet I tested negative for IFA antibodies...what does it matter!!!! Why are people still going on about antibodies. No IF. End of story.
I absolutely agree that I think more people get missed with false negatives. Let's face facts, that test is nothing less than dangerous. If you consider that most doctors only think B12 deficiency is serious if it strays into the land of PA, then so many people are not getting either the treatment they need or the recognition that they have permanent neuro damage, the whole thing is frightening.
I cannot think of one thing regarding current testing, diagnosis, understanding or treatment that is correct. Every single bit of it every step of the way is completely messed up.
Edit to say - Intrinsic factor aside - if you don't have the correct stomach acid pH then B12 cannot be cleaved from food. With no b12 to transport it doesn't matter if you have intrinsic factor or not, or antibodies or not. It simply cannot be separated from the food that you eat.
I totally agree. There needs to be a rethink on diagnosis. B12 deficiency causes the symptoms not having antibodies. I don't think anyone on here will disagree with that. It would be nice to have the certainty of a cause. Even people with confirmed PA struggle to get treatment so those of us who are IF negative without anaemia are at a more difficult position when interacting with people with no understanding of the condition. Other people with PA/B12 deficiency are our allies and truly understand.
I agree that finding the cause is important simply because other than the ones we have already got, which are rare and hard to define, they put it down to diet. They don't say it's diet, they just assume it is because they have no 'evidence'. That means that they think it is easily resolved by 'eating better' and slinging a bit of B12 in our direction.
I have to disagree at a certain level with the allies situation. I got sympathy for being ill for a year when my diagnosis was overlooked. I've never had any understanding relating to the damage that oversight left me with.
Maybe we are coming from different perspectives, but it would have been nice if someone had fought to help me get a day off sick, or healthcare, or any kind of assistance/support whatsoever. But I've had nothing.
Sympathy has its limitations. As my nan used to say 'A little bit of help is worth a lot of sympathy.' And she was right. She couldn't write my name, but she was a smart lady!
Edit for clarification.
I'll explain what I mean about a general (and expert) lack of understanding about the damage the illness can leave behind -
I telephoned several people in the UK a couple of months ago or so. I wanted help with this muscle problem. Now I know what happened - the nerves controlling those muscles died when I had the b12 deficiency overlooked and because the muscles can no longer be used, they are simply atrophying. But anyway what I wanted was 'expert' back up.
The experts that I phoned barely listened to me. One, when I tried to tell him of my concerns, snapped 'Do you want my help or not?' and then proceeded to reel off a load of stuff completely unrelated to my muscles or any remaining nerve damage. Stuff I had no concerns about whatsoever. He spoke about what he wanted to speak about - not about my concerns.
It was clear that even he thought because my B12 levels are 'normal now' that something else was amiss.
I can't tell you how gutted I was.
We have to start taking the remaining damage seriously - because my guess is that a lot of people which have it are currently diagnosed with other conditions and not getting any treatment at all.
Many of these people with ME and Fibromyalgia and all these other conditions, don't actually have those conditions, they have B12 deficiency and they aren't getting any treatment. It's not part of their condition, it IS their condition.
ME - a syndrome
Fibro - a syndrome
A syndrome - collections of symptoms of unknown cause. In the atypical cases these are B12 deficiency.
I am in that position myself and the neuropathies seem to be running at a pace at the moment.Can not get my doc to look at anything ,he knows best.He finally gave me another set of 4 loading doses ha!!Cant get him to see that the drip drip effect is doing the damage.
Perhaps we have had different experiences. I have had nothing but support from everyone on this board where there are people with B12 deficiency due to PA and other causes. I am very grateful for that. I just wish the PAS website wasn't down when I was first discovered to be B12 deficient as I would have had that support then at a very stressful time when GPs were refusing to treat me.
I think we possibly have had different experiences.
I had my B12 deficient blood test overlooked and found it myself and started treating myself before I ever joined the forum. My concern was always that I couldn't get the neuro damage I'd sustained, acknowledged. I still haven't and I don't know why I couldn't garner any interest at all.
I think sometimes the presumption is that we are all in the same situation. The personal impact on me prior to coming to the site and during the period my blood test was being overlooked, was devastating in that I couldn't get benefits. I was self employed, living alone and my doctor wouldn't even acknowledge I was ill.
After that, when the blood test was found, it seemed that everyone presumed I was immediately returned to 100% health - so I still couldn't get benefits, even though I was in a right old state. So I had to work or starve.
Then my GP tried to cover it up, I sold my house for half what I'd paid for it and was met at every avenue with 'Your blood levels are okay now.' I was still expected to work.
And so it continues. Now I'm not eligible for any benefits at all because I couldn't work hard enough to replace the house I'd lost, keep myself, and pay the government everything they wanted.
Meanwhile my original muscle damage is getting worse and I can't get treatment for the damage to my stomach because no one will acknowledge it apart from private doctors who need paying.
And I've got a family running round shouting 'she's nuts. she thinks b12 deficiency makes you ill.'
A bit rich, coming from a sister who has been off work for 10 years with ME and gets her £150,000 mortgage paid by idiots like me.
Criminals get a lot more rights than I've ever had.
You couldn't treat criminals like this - there would be uproar.
Of course the original GP who made the mistake and then lied through his teeth to his colleagues to stop himself getting into trouble, now appears to have been caught out - he is retiring...
Doesn't help me any. I can only stay alive as long as I can work. And I can't keep that up for much longer because I'm falling apart.
Support - ?
That's why I try so hard to get to the truth for other people. This can't go on. What has happened to me has been inhumane. I will fight to the death to stop it happening to others.
Incidentally, I am not knocking that 'thank God I've found other people like me' feeling when you first find the site. Just to find out there are other people who thought they were also going bonkers is so comforting. But I think there still ultimately exists a lot of confusion and big gaps end up becoming apparent. And one of those gaps is the B12 PA thing - which is why I made the posting in the first place.
I think everyone on here would acknowledge that what you have had to go through is awful. Your awful experience has made you learn about it and you are very knowledgeable about B12 and have greatly helped me and I'm sure countless others who contribute to/lurk on the board.
I hope so. I don't like to think I've been through all this and no one benefits. I try hard to turn negative situations into positive ones.
I just wish someone would have stopped the nightmare for me - because it goes on - You are about to hit the headlines with the first member of the PAS who starved to death because she couldn't get her injuries acknowledged.
I think that has been resolved by the British Society for Haematology's new guidance, people who have been diagnosed with B12 def are or IF negative PA or IF positiove PA, so all have PA, simple.
The finding of a low total serum cobalamin level may be further evaluated by testing for anti-intrinsic factor antibody (IFAB). If positive, the test has a high positive predictive value (95%) for the presence of pernicious anaemia (Toh, et al 1997), with a concurrent low false positive rate (1-2%) i.e. a high specificity. It identifies those patients with a need for lifelong cobalamin replacement therapy. IFAB is positive in 40-60% of cases(Ungar 1967) i.e. low sensitivity, and the finding of a negative intrinsic factor antibody assay does not therefore rule out pernicious anaemia (hereafter referred to as AbNegPA). In addition, the positivity rate increases with age(Davidson 1989) and in certain racial groups [Latino-Americans and African-Americans; (Carmel 1992)]."
My (previous) GP said I have PA, although negative for anti-intrinsic factor antibody at that time he said in time that could change.
Well for starters, Marre they are only advising the test if B12 levels are low. So that takes out half the people on this site.
Secondly they aren't telling anyone that B12 deficiency with or without IFA is just as important as with.
We have known for a long time that a negative does not necessarily mean it really is negative. But the majority of doctors don't. And they aren't going to wade through 40 pages to find out.
I've said before that your doctors were good - other people's aren't. My doctors - all of them - simply did one test, they never even mentioned doing another.
Besides which, wasn't my b12 level low enough for long enough without treatment to convince them I was ill?
Apparently not.
Even the muscle damage was put down as being cognitive. Muscle damage you could see.
If you'd have read the comments on the CME section of the BMJ article you would have seen what I meant.
Doctors haven't got a clue about B12 deficiency and the damage it does. Not a clue.
Then they were all panicking because they were saying 'well how do we really diagnose it?' They want 100% certainties.
Be honest, Marre, how many people on this site have been diagnosed with PA after having tested negative for IFAs? Someone came on the other day and said they had to have 3 tests. Yet most people are lucky to get one. We get one, it's negative, end of story.
The whole PA v B12 thing has got to end.
The guidance is still new, it will take time for it to filter down to every one involved I'm sure.
Re: "Secondly they aren't telling anyone that B12 deficiency with or without IFA is just as important as with." They are recommending treatment is the same and for life.
Patients suspected of having pernicious anaemia should be tested for intrinsic factor antibody. Patients found to be positive should have lifelong therapy with cobalamin (Grade 1A).
Patients negative for intrinsic factor antibody, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-intrinsic factor antibody negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response. (Grade 2A)
We don't want it to take a long time. People are ill now. They need treatment now. They need recognition now.
And, if I remember correctly, the guidance from 1990 said exactly the same thing - that a negative IFA doesn't necessarily mean it. That never filtered down.
Doctors need to be aware of the damage B12 deficiency does. On its own. No mention of PA necessary.
When I went to see the consultant a) he didn't examine me. He just asked if I'd improved. Well, yes, I'd been dying and I had improved. Although after I left the hospital two women stopped and asked me if I was okay. I looked so fit and well.
Then he said I couldn't have been very ill because I'd tested negative for antibodies.
Am I to take from that statement that if I had tested positive then I wouldn't have been a malingerer? (which I really resent since I've never had a penny out of anyone and never a day off work) Would my damage suddenly have become real?
Well, no, actually. Because when I tackled him about it at a later date (I sent him all the stuff that says about the IFAs etc) He said I couldn't have been ill because I didn't have 'a severe anaemia'.
Not even just plain old anaemia, it had to be severe.
So what this consultant is waiting for is a) Antibodies (and no, I was not offered another test) and b) severe anaemia -and that was the reason I didn't get the MRI that the first consultant said I needed.
And that is because they all still believe that B12 deficiency is an anaemia which kills. Which belongs somewhere back in the 1840s.
So if you had been to see my consultant, you wouldn't have been diagnosed with anything, apart from a treated B12 deficiency. You would have been sent back to work and told to get on with it.
Maybe I am talking out of turn but if PA did a leaflet quoting all of this guidance then I am sure everyone on here would print it off and make sure all GP's in their area were given a copy. OK many would not read it but a lot would and every GP who does get the info mean more patients will be treated properly.
Even better, all GP's have a district group they belong to, identify which GP leads the group and get through to them and ask them to distribute.
At the moment we've got a brilliant article to fall back on in the BMJ online - which actually gives even more information than the BCSH.
That explains exactly what B12 deficiency does, the metabolic processes it is required for, the fact that 6% of patients are left with residual disability (Oh, to have had that information at the start of this mess!), the fact 20% of patients don't have anaemia but are still neurologically injured, the fact that you don't need to have low B12 levels to be ill, and that bringing B12 levels into normal doesn't reflect how effective the treatment is being.
It isn't perfect, but it's close.
Yet, nobody is using it. None of the B12 support groups.
Pat Kornic won't use it because she says it doesn't mention folic acid. Yes, it does - which makes me think they haven't read it.
Marre doesn't like it because it doesn't thank one of the labs - actually it does.
It's behind a paywall on the BMJ site which is the problem because patients aren't members. But Drs are reading it, and they are printing it off, because it gives the metrics. So things are changing and they are changing quite quickly. Just not quick enough.
You can access the full document by googling 'PDF cmim Vitamin B12 Deficiency Hunt'
Because the best thing patients can do is find this document and read it for themselves. If there is something you don't understand, just ask.
Living in Crete I am not up to speed with how many things now operate in the UK. However I am aware that the Chief Medical Officer of Health did send out a letter to ALL Health Practitioners a few years back regarding the testing of VitD - am wondering if the same would be possible for B12. Of course I think EVERYONE should be tested and not just the vulnerable as detailed in the VitD letter. Maybe the new film - Could It Be B12 ? - the story of Sally Pacholok will increase awareness too....
Sadly blood tests are only as good as the person interpreting them - and as we know so many Docs fall short in that area. Also in spite of the letter about D patients are still having to fight for the tests.
I wrote to numerous government departments, I think the year before last. I know the PAS wrote because they had a screenshot of the response. It was a standard response because it was exactly the same as I got.
They won't change anything. They think the treatment and diagnosis at the moment is adequate.
I think what is so difficult to get our heads around is the fact that doctors, like most people, don't understand the illness. It literally has become ingrained that it's a blood condition which causes fatigue and breathlessness and it's easily reversed.
... and you cannot get past that.
The only person I had a great response from was HM Queen Elizabeth II - what a woman! She sent my letter to her to Jeremy Hunt. He sent it round to the Government and they sent me the same standard response.
But I'll tell you now - the Queen is one person who actually reads what you put!
She'd no need to do a thing with my letter - not a thing apart from send me an acknowledgement. But she said she had an interest and sent it on.
Sorry, Marz - I didn't mean to flatten it. It's just that when you've done the 'been there, done that' and know how long it takes to get a patronizing load of inaccurate gumpf back from some clerk in a government cupboard, you know folk are wasting their time.
If the Queen can't pull it off...
The letter I got back from the government, I can never actually show anyone, because I scribbled profanities all over the points that were a load of garbage!
...I have written to JH re his Alzheimer article in the paper - am not expecting a reply. I just felt better writing it When they can sort out the basics - B12 - Thyroid - VitD - Statins - then the nations will be healthier and there will be less dementia and illness in general. But sadly it will not fill the coffers of Big Pharma.
Like you I have had to sort out my own health and have had a lifetime of Docs looking at this healthy strong 5'11'' gal who couldn't possibly be anything but FIT ! Like you I could write a book of the missed opportunities by Docs. As for joining up the dots - ummm ?
Too many vested interests and in more ways than one.
It's not just big pharma, it's research labs that are kept continually in work, it's doctors not wanting to look stupid - there are multiple reasons for not acknowledging what B12 deficiency really does.
However, I have said all along, that if the majority of doctors out there had it explained to them, they would act on the information.
They wouldn't want a stink, they wouldn't want to accept responsibility for damage already caused - but they would change the way they diagnose and treat the illness.
They simply do not understand. The truth is so far removed from their understanding of it, it beggars belief.
I only mentioned Big Pharma as most research is financed by them ! Then in order for the research to be published it has to be peer reviewed - again Big Pharma pays the Ferryman. Have you read - Doctoring Data - by Dr Malcolm Kendrick ? - or even looked at his website. It makes interesting reading with valuable insight into the way things work. I realise you know this already - but it is interesting....
I haven't read the whole book but I was doing an article on statins and cholesterol the other week and was looking at his blog. It was very good.
I'm being lazy, I'll go look...
I'm editing in the wrong order...
I put a post up the other week about research being financed by big pharma. Even if it doesn't initially appear that it is, you track back their 'donations' from certain 'companies' and those companies are owned by big pharma.
The peer review situation is why I will always support the BMJ. Because they have now incorporated PATIENT peer reviews as being part of their publication process. So patients get a voice. I think they have been extraordinarily brave in doing this. Doctors don't want it, big pharma doesn't want it - but they do it and the patient's review gets equal weighting to the professional review.
Infuriating because I can't watch videos ... my laptop crashes.
The BMJ editor at the minute is absolutely on the level. A woman with both guts and honour! To give patients equal weighting in peer reviewing really puts the brakes on poor research getting out there and points out the problems for patients. And big pharma doesn't have an influence over patients.
Dr Collins was responsible for widening the net to catch the number of people being put on to statins. Even though they knew that it was causing illnesses just as serious as the one it was 'supposed' to prevent and, even before the net widening, in larger numbers than those it 'helped'.
I'm nearly certain his research establishment is in Oxford - though not 100%
The muscle problems have long been known - I did more research after the article and I even know, now, why statins cause the muscle damage.
Tiz all about Rory Collins having to back down over cholesterol research. Apparently he had been hiding the negative stuff in cupboards - after being in the job for 20 years there must have been an awful lot That's jut me saying the above ! But he has admitted to not knowing about the bad research - wow how could that happen. What the hell has he been doing for the last 20 years ? Am sure there is more to come out !
Yes he is based in Oxford - supposedly funded by the BHF - but I wonder who funds them ?
Well, if I remember right he is funded by the drug companies.
If memory serves (and I was more interested in the science behind statins at the time) he caused a hell of a stink because an article went up in the BMJ which highlighted the problems with statins - and I seem to remember he got something pulled from somewhere declaring that millions would die (where have we heard that before!) if the statins net wasn't widened. He then went on to back the drug companies and they widened the net and increased the intensity of dosage.
Why now has he decided to do a U-turn? I don't see that it's simply a few law suits. He and big pharma aren't frightened of a few cases. As an example: in the US B12 deficiency misdignosed as MS is one of the top 5 law suits in medical negligence. Nobody seems to care much...
At a guess - some, much bigger news, is on the cards...
Kendricks book - Doctoring Data - explains how flawed research is. It's well worth a read and a DVD comes with it if you are busy ! The hidden research is just that statins do not prevent heart disease and few people benefit. There was some research done over time - that demonstrated that deaths in hospital were people with LOW cholesterol. I met him at the Thyroid UK conference last year - he was one of the speakers. One of his quotes that I remember.....cholesterol is a chemical so cannot be good and bad at the same time !!
Kendrick also points out that when he started in medicine the level for cholesterol treatment was around 7.5 - now they are talking about 4. In that case everyman and his dog will be on them ! The same has happened with blood pressure treatment - they keep lowering the levels
Have you read any of John Ioannidis articles - one of his quotes that I love - 'for many current scientific fields claimed research findings may often be simply accurate measures of the prevailing bias - '
You are right - something big will happen soon....with 7 million people on statins in the UK - causing reduced VitD processes - not to
mention the Alzheimers and Dementia
epidemic. Someone surely will soon complete the dot-to-dot puzzle ....
I know the figures that I dug out for statins showed that 1.5% of primary patients on statins - that is the people who had no preexisting condition and were perfectly healthy - the group that the net was widened for - developed diabetes as a direct result of the statins. So it gave them a health problem.
...and absolutely right about the vit d!
What people don't realise is that cholesterol is a vital compound within the body and lowering it too far is dangerous. Yet, as you also point out, they keep moving the goal posts when it comes to treatment. So the 'high' level becomes lower and lower.
Who says it's 'too high'?
Which is why you get the people dying who have low cholesterol - because low cholesterol is very, very dangerous.
Where's the scientific evidence of what the body requires?
It's like 'normal' B12 levels. Who decides what is normal? Well, the labs decide by measuring the b12 levels in people who are 'healthy' - yet many people have sub-clinical b12 deficiency.
Instead of founding it in changes to spinal cord fluid where they can measure DNA changes, they found it in a bunch of people from Newcastle or wherever and ask them questions specific to what the 'scientists' believe B12 deficiency does. But we know they don't really know.
So, yes, Loannidis is right.
Which is why, in all of this, my one huge problem with modern medicine is that they exclude the unprompted observations of the patients. It used to be that observational medicine ruled. Now science rules and more so, patients are excluded. And now science is messing up - big time.
The net widening actually went through, for certain in the US and the UK were to follow shortly after.
What they did was instead of incorporating people with a 20% risk of developing CDV within the next 10 years, they reduced it to people who had a 10% risk of developing CDV in the next 10 years. In the US it's 7.5% risk. Not only that but they want the switch from medium intensity statins to high intensity.
....and medicine was once an art as well as a science ! Kendrick quoted about one piece of statin research - apparently there were no side-effects over the allotted time. However they forgot to mention that 3000 or so dropped out in the first few months Sorry not sure of the numbers - time for shut-eye here in Crete !
You will love his latest book with your interest/knowledge of percentages/numbers etc. Go buy !
You're right, I need to sit down and read all this stuff properly. Chancery mentioned a few good reads as well. I never seem to get time to do anything other than work!
You're right, I need to sit down and read all this stuff properly. Chancery mentioned a few good reads as well. I never seem to get time to do anything other than work!
I agree with poppet. I have found the doctors woefully ignorant, condescending and patronising. I insisted on thyroid, vit d, h pylori,peri-menopause tests. All came back normal. When I said to docs, if all above rests normal, then what's the cause of my symptoms - I got a shrug of the shoulders...and was told my b12 was normal(218). So I don't have pa and basically I'm being a hypochondriac. I ts very much a case of taking matters into your own hands or wait until you're really sick then they might help(until serum is high then they'll tell you you are better and no more treatment if necessary. Mind boggling if you think how cheap treatment is. Was also told high levels of b12 are dangerous. Hadto inform dr that b12 is water soluble and you will pee out what body doesn't need. Was also told tingling feet and tinnitus not symptoms of b12d! Theyreally have no idea or interest
What gets even better is when family and friends phone the doctor up and the doctor tells them there is nothing wrong with you!
That's brilliant, that is. Of course the doctor doesn't tell you that they have been talking to all and sundry.
So everyone just talks about you behind your back.
Then they try to get you sectioned - because B12 deficiency can't make you ill because YOUR doctor has told them.
And then you take in a test proving you have low stomach acid which causes multitudal problems including B12 deficiency and cancer - and they still sit there sniggering at you.
They then write in your notes that 'you' are investigating it.
Then they tell your family and friends again that 'you' think there is something else wrong now!
What a hoot!
Then your family and friends tell everyone else...before you know it the world thinks you're nuts when, quite possibly, you're dying.
It's a right laugh.
The B12 thing needs sorting and it needs sorting now.
Oh, and I've just got to add to this because, apparently, it's so funny...
When I discovered that my sister had been speaking to my doctor - I only found this out when the mental health services people phoned because she had contacted them as well (and they followed procedure and told me who had phoned and why) and I asked my sister why she had done it, she started laughing and responded
"You don't know who else I've phoned"
She was giggling hysterically at this point.
When I asked her what else she had done, she replied,
"I'm not telling you."
She'd just contacted everyone she could think of as well as arranging 'family meetings' about me.
All I was doing was going to a doctors for a 'confidential' consultation - apparently most of western civilization was involved.
Best bit is, I hadn't even had any contact with my sister for over 3 months.
But still, it shouldn't have been allowed to happen. A patient should be able to go to their doctor and be afforded complete confidentiality. They shouldn't give the feeble-minded folk ammunition to attack you with.
No one should be able to phone a doctor and give them the 'it's only because I care/am concerned/want to help' speech and be told stuff.
Whether it is incorrect or not.
The information my family were provided with was clearly completely incorrect - but either way, it should never, ever happen.
If someone phones a doctor with their concerns, then the doctor is obliged to tell the patient who has phoned and why and give them the opportunity to respond.
But that didn't happen in my case. Or at least it didn't with my GP. The guy from them mental health department, phoned me, told me who had phoned and why and asked for my response.
I responded.
He declared me to have full mental capacity and wanted no further involvement. In fact I would emphasize the fact that he realised the call was malicious.
I think a short simple leaflet would be really helpful. I have an interested aware GP but even they 'don't have time' they say to read up on this in detail.
All I know, Frodo is that similar things were suggested on the old forum and they were told that the PAS already had leaflets and patients could print them off and give them to their GPs.
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