Pernicious Anaemia Society
15,882 members11,123 posts

Medical scandal

Hi All

I, like many other sufferers on this site, detail the casual ignorance and wanton misdiagnosis by medical professionals of our conditions even, in my case, contradicting the NHS b12 symptoms. The nurses at my practice look at me as though I am crazy when I respond to their question “How have you been?” By telling them that my tinnitus has reduced dramatically as have my auditory hallucinations but that I am still getting absence seizures 6-8 weeks after my 12 weekly injection. Not to mention both my doctor and whoever was on the triage service telling me that what I described were not symptoms of b12 deficiency and, in one case, asking me about stress in my life and any trauma etc and trying to take me down the lack of sanity route.

The administrators on this site are fantastic but, given the number of cases to which they respond, they must conclude that there is so much seriously wrong with so many GP practices that it is beyond bordering on medical negligence but far exceeding it!

Has anyone sued on the basis of so much medical ignorance/incompetence? Or are we sufferers just exaggerating the problems that we meet when we go to our doctors?

28 Replies
oldestnewest

I agree with you on every point . I have not heard of anyone suing for negligence .I doubt whether it would succeed anyway because the doctaters ( Freudian slip?) can just say that they are following guide lines which we know are inadequate . And anyhow guidelines are just that and do not have to be followed apparently . We have to make more noise . Trouble is that when you are unwell , you feel unable to make the necessary noise . Martyn Hooper makes noise on our behalf , but he has to step carefully and not tread on toes . It’s like dancing on eggs . I feel for the people with PA who do not know about PAS , and aren’t able to access the Internet . At least we have each other .

7 likes
Reply

Thank you for your response. Pleading that guidelines are being followed is one thing but the degree of medical ignorance that I have personally encountered on b12 deficiency brings into focus medical competence. In addition, reading many blogs suggests an element of professional punishment for daring to question medical opinion.

If we have facts and certain medical Practitioners, on being told of these facts (no doctor can know everything) , either choose to ignore them or refute them then they are laying themselves open to competency proceedings.

5 likes
Reply

Well , it doesn’t seem to bother them one jot . They have supreme confidence that they will not be brought to book . I presented my GP with medical facts about P.A.which were totally ignored .I was told that I couldn’t have more than 1 injection every 12 weeks because of the toxicity of B12. The whole experience was a nightmare . I was offered anti-depressant tablets though !!! I’m just glad I can keep well by self injecting . Thank goodness for German pharmacies

I have never heard of anyone suing for medical negligence regarding P.A.

4 likes
Reply

I had the same wedgewood - my GP even ignored the consultant she’d referred me to for Lupus who diagnosed the B12 deficiency & she read the bit of BNF out aloud when I pointed out to her that I should be getting more based on neurological symptoms & where in the BNF it says it so agreed on that basis & the spinal issue document I asked her to attach to my records (thanks to foggyme for all that advise) then when I called for the nurse to make the appointments she told me the dr had changed her mind and I wasn’t getting anymore!!! The doctor had offered me anti depressants many times saying ‘just to help you feel better’ & I answer the same every time ‘no thank you, I want to treat my actual issues to feel better’.

8 likes
Reply

It’s so hard to stand up to the doctor who is denying you treatment when you feel so very ill. I’m glad that you did and I hope that you are are getting the treatment that you need . Best wishes .

1 like
Reply

There has to be a first for everything! When my grandmother received B12 injections for subacute combined degeneration of the cord she was among the first to be treated with B12, sadly too late to do any good. Medical negligence was not an issue because at that time medical knowledge of the subject and the means to treat were very new. Now we have the means to diagnose and treat but it is being Ignored. That is medical negligence!

1 like
Reply

Absolutely

Reply

My doc erased my records of ever being diagnosed with PA, and removed the letter from my neurologist asking for B12 for life. I am going to find it VERY difficult to put a case against him to state that it's his fault I am this poorly. Entirely his fault. My new doctors state that I have PA as one of my conditions, so I don't know how he can claim he never ever knew about it.

2 likes
Reply

That’s really outrageous . But can records really be erased completely ? If so, it gives carte blanche to crooked doctors . Surely they could be retrieved by a computer wizard . You must be feeling so bitter about it all . But when you feel unwell , it’s almost impossible to raise the necessary strength for a fight with the medical profession , and the finances also. I have no end of sympathy with you .

1 like
Reply

I hope, on all hopes that my original letter from the Neuro team is still on record at the hospital it was sent from, if he didn't manage to erase that side, I at least have that, but he could claim they never received it and it would be put down to clerical error, then I could probably sue the NHS, but I don't want to sue for money, (although I've been told with how poorly I am, I'm looking at millions) I want him out of a job, for the rest of his life.

3 likes
Reply

Do you get copies of letters sent from the hospital? It will be in their records and blood test results.

Reply

Computer records should leave a trace and altering the records is a serious breach of the GMC code of good medical practice. If the doctor has tried to erase the evidence your case would be strengthened, not weakened.

Reply

All this pussy footing around “not upsetting the powers that be” is achieving very little - and in the meantime the unnecessary suffering goes on!

Reply

Considering my medical negligence case is absolutely insane (please check my first post, or one of my first posts to find out what happened so I don't have to repeat) no "no win no fee" solicitor will touch me with a 10ft barge pole because my case is far too extreme and difficult for them to want to take it on without being paid unless I win.

So yeah, I have to gather all the evidence, go through with my official complaint in the first instance, then start asking for investigations to PROVE what has happened to me, it's going to take years for me to compile a case against my doc, by then he'll probably be dead or already retired which means I cannot strip him of his Dr title.

Oh well.

2 likes
Reply

Hi Alfabeta one of B12 deficiency symptoms is "Psychosis"

"a severe mental disorder in which thought and emotions are so impaired that contact is lost with external reality".

It seems as if the doctors were trying to suggest you suffer from "Psychosis" whilst at the same time denying that it is a symptom of B12 deficiency.

5 likes
Reply

Thank you for your response, Clive. The problem as I see it is that my doctors have a simplistic very basic understanding of PA and little if any understanding of b12 deficiency.

Apart from what I have written about the doctors views - one nurse recently diagnosed with b12 deficiency stated she only suffered fatigue and that b12 deficiency is usually caused by another medical condition- in her case osteo arthritis - that’s news to me! Another just ‘kerfawed’ when I told her about my symptoms as if I was making them up and another said that I was the only patient who had ‘other symptoms’.

If my builder or plumber or candelstick maker showed this level of ignorance they would be out of a job - why are medical practitioners allowed to be so ignorant and yet adamant that they are right?

I read daily of people who write on here who are reporting far worse medical diagnoses than I have received and who are far more ill than I am.

As I said at the outset, I read daily accounts which mount up to a national medical scandal!

6 likes
Reply

It is a National Medical scandal . And it’s costing the country billions .just for the lack of a cheap injection, having eventually to treat people who get irreversible damage . Is it a coincidence that Big Pharma is not involved with B12 ?—- no money in a non -patentable medicine - They won’t be sending their reps round the surgeries pushing B12- etcetera , etcetera (read into that what you will )

12 likes
Reply

It is costing the NHS - ie US - a fortune to treat the avoidable symptoms of deficiency. Action is required ASAP

Reply

I was sitting quietly in my GP surgery's waiting room, and I overheard the receptionist saying to someone that it was 'that patient who wanted more frequent B12' on the phone. And yet when I spoke to them about wanting more, they said no-one ever needs or wants more; clearly not true when there are at least two of us at one very small GP practice!

5 likes
Reply

Well that’s exactly what my surgery said to me as well! And a neighbour of mine at the same surgery has requested the same ( in vain of course ) I always tell people who self inject to tell their doctors , otherwise they think the once every 3 months is enough . I told my doctor that I inject every week . Highly disapproved of of course . But I don’t care .

Some people are afraid of “consequences” /repercussions from their doctor .

1 like
Reply

If you can get a case together there are literally thousands of us who can support you and add similar stories to back you up.

There have been several people on here and the Facebook support group who have said about bringing cases but I don't know of anyone who has done it.

2 likes
Reply

Absolutely! My money subscribing to the PA Society would be better spent helping to fund a class action!

3 likes
Reply

I wonder if getting major attention from the BBC and the mainstream TV stations would be an effective starting point to highlight the problems before it is taken to a court situation?

I'd love to persue that route and would if I wasn't stuck with needing to work every hour that I'm awake to keep myself going. I spend a bit of time on here as it feels good to pass on the lifesaving service given to me and I'm not killing my joints in the process but otherwise I don't do enough of the basic things I ought to!

I wonder if there is anyone with the time to approach programmes like Panorama?

3 likes
Reply

My daughter and I were discussing this very topic yesterday whilst enjoying the wonderfully warm sunshine on a local pathway. I had been told of someone who had been given B12 injections after having gone through the trauma of being treated for everything else first and was said to be up and about almost like the proverbial spring chicken the day after and is now on an injection a day for the next month. She also has a work colleague whose husband was actually diagnosed too late and died, died very painfully just a year or so ago.

It is crazy to think that such things can happen until you think of your own experiences. For me there were several symptoms and problems I had been having assorted pills and potions for - unsuccessfully - over 18 months before the light dawned; this is nothing new though as a former GP at our practice once put me through a year of tests and no treatment because he was convinced I had MS - it was a spondylosis following a road accident a couple of years earlier so some physio and traction more or less sorted it out, had he just read my notes. Despite this I still preferred that GP and a few years later when I some more strange problems he diagnosed Asthma, mainly because an inhaler helped, and continued to do so despite ever increasing difficulties for over 7 years until he retired, after that another one and I found what the problem actually was and a fundopliation operation cured me overnight. The current senior partner, who I refuse to see, was also wrong as he treated me for bronchitis which I didn't have.

The current young GP I insist upon seeing is a very refreshing change. He is very thorough, making sure he does know everything he can about you before he sees you, and listens to what you have to say. He also commented, when we were discussing what could be done about the neuro problems I was having, that he is 'what it says on the tin' a Generalist and knows a little about a lot without knowing everything about anything. He was eager to learn about B12 deficiency and has explored the subject. He now feels constrained by the license conditions of hydroxocobalamin and without advice from consultant is not prepared to go outside it's conditions - the hematologist wants me to stop injections for 6 months to do blood tests to check the original diagnosis, my comment was simply b----cks.

We are increasingly in a world where the 'ambulance chasing' legal attitude of the USA is impinging on every sphere of life, no matter what the circumstances someone must be to blame and therefore sued. It does tend to mean guidelines, product license terms and the like are going to be followed by anyone prescribing, advising, designing and creating who will be seeking such endorsement of their actions so that they can point to having followed the 'rules' at the first sign of inquiry. There are so many prying eyes overseeing what the GP does these days and not only for clinical reasons but also for trimming costs so if there is an official document which says 12 weeks is the dose then so be it, they are safe from censure if that is what they follow.

There is also the cost aspect of our condition of B12 deficiency being about 50p per dose or just over 4p per week. If that deals with most cases why bother looking into the cases where dosing more often could have some benefit? If everyone were to be given this life preserving substance every week then the bill to the NHS would be much more significant than it currently is, still a hell of a lot less than that for injecting diabetics though. The NHS isn't going to be too keen to encourage going down that route and neither are the drug companies as the treatment isn't expensive enough to justify any expenditure on research or development. Added to this is that those of us needing additional dosages are going down the self injections route and paying for it ourselves - come the cast off of the good ship UK from our neighbours then Her Majesty's Bandits and Robbers in HMRC could get very interested in our sources of supply and impose an import tariff on Hydroxocobalamin from those wonderful people in Germany. A true win-win situation for HMG.

2 likes
Reply

You're right of course. It can be very difficult to get the message across to the health care professionals, they're either aloof, tired, heard it all before etc etc. You have to develop your own way to get them focused on the task at hand. In my own case I've found it handy to walk into the consultation room with a 14lb sledge hammer and put it on his/hers desk. Try it, you'll have their full attention, I guarantee it works a treat.

Good luck BTW.

Reply

I had no detectable b12 by the time they found out what was wrong with me. I thought I had every symptom possible, but I never had auditory hallucinations. I did have vertigo. I was told by several doctors (who never by the way never did test for b12) that I was in a lot of stress and or needed counseling. By this time, I wished it could be so easy because my symptoms were so numerous and scary. You need to have a specific B12 test done to confirm is is B12 deficiency. If you are taking the right dosage you should be getting better but healing is very slow. I did not know that 1ml and 1CC were the same and therefore I was giving myself 1/10th of what I should have been getting for 6 weeks. I wasn't getting worse but could not tell I was getting any better. Be sure you are getting the right dose. I did one shot a day for a week, 2 shots a week for a month, 1 shot a week for a month and then one shot a month for life. Doing good, but it took over a year and a half to stop the face tremors and numbness or lack of natural sensations. Take care.

2 likes
Reply

As a doctor I doubt very much that such a defence would be effective. I certainly would be very worried that the GMC would be questioning my competence. Once upon a time doctors used their intelligence and training rather than relying on guidelines and computer prompts.

4 likes
Reply

It seems so many medical professionals say 'so what' when faced with these issues. I had a terrible year last year with a full on seizure (no detectable irregular brain activity), after months of other serious medical problems. My B12 insufficiency was only picked up by private blood test (paid for by savings) due to my thyroid function being screwy after 20yrs of mono Levothyroxine treatment. I am receiving some support now but I still feel my GP etc. cannot really understand what the issues are. Personally I would never have believed that a simple? vitamin insufficiency could make you so ill and for so long. Thank goodness for the support we all receive here - I hate to think where I would be without it.

1 like
Reply

You may also like...