Pernicious Anaemia Society
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I want to sue those who ignored and made loose so much

Now im recovering (im not me again yet, still get pain bad times heart stuff.and my mind is mush and foggy and. all that but baring the mind and fog im incredibley better than before yay) im well enough to be angry at those who ignored me and made me have to go through all i did and still am going through (lost my job, ive had to change country amd leave UK for doctors that seem to care about my PA and symptoms)

And to be honest I am considering suing, as multiple (well 4 and one from phyciatrist) dr notes were ignored (saying i could have b12 AS SYMPTOMS SHOWED) usially because nurses or other docs said dosent work that way or there are no symptoms or just take tablets ... worse still try to go longer without or the best one being more thanone jab every two months can give you cancer (god i wish i recorded that day) i even offered to pay extra for them and was told akl imagined or it was because id seen celebruties who do b12 or i though it wiuld make me muscley(wierd eh?)

Everytime i went to dr or for jab id mention b12 and pains and fatiuge and all the warnings and was just ignored

Wound up in wheel chair in real agony heart oains respirtory..paid for money ct scans chowing no cancer no evil things and yeah. ill try not to go through it all again as im sick of typing it all... basically bad stuff. .. sure many on here have had simlar and worse

Anyway i have some lawyers looking into things for me and even if they dont help im going to look until i find someone that can, as its literally ridiculous and clearly negligence in my opinion... and im furious... if i didnt treat me and listened to those drs rather than PAS , the people on here, family friends and a few paris docs im sure id be far far worse possibley dead but definitley still unable to walk... at least now im slowly getting back on track

I pointed out the whole b12 thing to doctors in uk and how much id improved with b12 when they ignored saying impossible and when literally couldnt work they said damaged rib and they still wouldnt change thier position (i didnt mention sueing)

Anyway has anyone on here tried simlar things before? Advice? So on and so forth? Because if i cant sue (there must be a way as negligent as F×××!) i want to do somthing as its sickening how alot of suffers of PA seem to be treated including me... and im just so angry... i had good job good everything and i mentioned b12 to docs frequently and just shunned to point were if i didnt leave uk id be on benfits now (also didnt qualify for) due to loosing job and im pretty certian had it been treated more earlyier and my multiple doctors notes were actually listened too id be alot better and not had to leave at all... ahhh sorry rant over ... just want to punish the b××××××s via suing or a media shaming campain or somthing...I mean doctors didnt even mention folate and other vits like on here to help v12 function and. . oh yeah rant over .. ill shh now but my question still stands

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I can understand your anger Fudgemanjim

It is truly terrible what has happened to you . I have to say that my experience with doctors in respect to the (non) diagnosis of PA has left it’s mark both physically and mentally . I really do believe it does boil down to £££s . There is no £ in PA . therefore no interest . No money for the pharmaceutical industry in anything that is non -patentable like a vitamin . We do not reaIise how powerful these companies are in their relationship to the N.H.S. and G.P.s . I know that this sounds cynical , but my experience has left me like this . I have been treated with contempt also . I am now convinced that my mother had P.A. She died a horrible slow death . I only managed to get a diagnosis by luckily having enough money to pay to see a private doctor and luckily finding one who had some knowledge of B12 deficiency . It really upsets me to know that there are people out there who don’t have this advantage . I cannot believe that this is happening in 2018 in a country as advanced as U.K. Even with a diagnosis ( lack of Intrinsic Factor, but couldn’t prove lack of stomach acid as there is no test) my GP would not give me more than a 3 monthly injection and my numb feet were “idiopathic “ I mustn’t go on any more about myself . I haven’t anwered your question . Yes , I would loved to have sued , but I’m too mentally exhausted . Also it is very very difficult to sue the medical profession . They will close ranks .

I’m not doing you any good with my rant . But I saw that no one had responded to you and I wanted to let you know how I empathised with your dilemma . I should have written this privately to you, considering what I’ve said. I expect that I will be given some stick for what I’ve put , but I don’t care . It is my honest opinion . All I can say now is God bless Martyn Hooper , for his work on our behalf and facilitating this forum . I can’t praise him enough . Without him we would be in a much worse place .

I hope that you get some response to your question . Very best wishes . I’m hesitating to send this but I WILL !

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Wedgewood, WELL DONE, you have done nothing wrong by being totally honest. You have spoken the truth. Doctors and consultants (well most of them) are absolutely useless and could not care less about people's wellbeing. They do not want well people... they'd be out of a job... and by treating people they would miss out on fat monetary and other forms of rewards from Big Pharma!

Apologies for hijaking Fudgemanjim's post... but could not resist admiring your reply and honesty. Of course, I too feel empathy with Fudgemanjim....and many others of us who cannot get the help we need from useless so-called medical professionals! This country falls very low in the ranks of medical care... we could be living in an extemely deprived developing country as far as medical care or rather lack of it is concerned!.... it's a disgrace.

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I will always remember your initials when I think of P.A. and B12 deficiency —-Just Grievous Bodily Harm. —— which is what lots of folk with the above conditions get from no or inadequate treatment , Thanks for your kind remarks . I haven’t had any flak yet !

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Excellent, regarding the deciphering the acromym - JGHB!

Can't imagine WHY or WHO should give you any flak for only being brave enough for speaking the truth? Who should wish to "protect" useless medics?? No doubt there are a few people but wonder what their agenda would be...

Do hope you're keeping well. x

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Yes thanks JGBH , I’m fine now that I can self-inject when I need to . It’s just that I know that Martyn Hooper is doing his best for us to get better recognition and treatment . He has to deal with those ‘Powers that be ‘ and they wouldn’t approve of the inferences I wrote . And maybe there are members who might agree with what I think, but wouldn’t want to ‘ rock the boat ‘ But then would those ‘powers that be’ be reading our posts? I doubt it !

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Glad you are doing well now... Indeed we all owe Maryn Hooper a big debt. I understand you would not like to create any kind of problem for him and PAS who are working so hard to make a difference, but somehow can't imagine the "powers" that be will be reading any comments made on this site, especially on a Saturday afternoon. Perhaps too busy spending their bonus rewards!!! Sorry could not help it....

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Thank you for sending this!

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👍🏼

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Although I cannot help with your question about sueing I wanted to let you know my brother also wants to sue someone. He struggled for 35 years (also had to give up his job as an accountant). Kept being told it’s depression, ME etc.. He has been having injections for 5 years and is finally feeling a lot better but is now angry at the life he has lost. . I am thinking of self injecting, my b12 is 220 and I struggle through the day with all the symptoms, went to doctors this week and was told no you are not deficient. I even quoted the guidelines but the doctor said no.

Anyway enough of the rant. I wanted you to know you are not alone, maybe a group sueing might make a difference somehow! I will eagerly watch for more updates from you. Are you the person who went to live in France to be treated as your partner was from there?

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My b12 was also 220 and docs also said that was fine despite my complaints of increasingly numb hands brain fog etc. However I was told my folic acid was low and to buy it myself so i started taking that and a multi vit which obvs helped bloods slightly as b12 went to 400 but symptoms remained. It was only joining HU after i had a thyroidectomy that i heard about sublingual methycobalamin. I take 5000mcg a day and my b12 level is now around 2000 which freaks some gps out but i have tried to take less on 3 separate occasions and each time my symptoms (& numb hands !) return.

I have a friend who has a low but in range b12 plus increasingly numb feet (plus other low b12 symptoms) and i have tried to inform her about b12 but she believes docs that tell her she has "neuropathy and there's no cure". I gave her few weeks of sublinguals but she said too expensive to keep taking. Frustrates me docs aren't doing anything for her despite the guidelines.

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I started taking sub-lingual methycobalamin 1000mcg day a few months ago, I think I will try 5000. I’ve read so much since joining HU but such a lot I can’t retain because of the brain fog, I have to read and re-read all the time. My mum had b12 injections and now my brother. It was too late for my mum though, I think she had already started with dementia by the time she was given them! Like your friend I used to trust the medical profession but not anymore. My brother told me 5 years ago to get it checked and because I believed in my doctor I wasted another 4 years. HU is fantastic, I’ve learned so much (when I can actually remember what I have read)!! I hope you can talk your friend round.

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Please tell your friend that injecting is very cheap - cheaper than those sub-linguals . In injection need cost no more than £1.00 incuding 1mg ampoule of Hydroxocobalamin , withdrawing needle , injection needle , syringe and alcohol swab . If she buys in bulk ( 100 at a time ).it is the most efficacious method of administering 12 . I had totally numb feet when I started S.I. I now just have burning feet , but I can now drive my car safely , I had to take treatment into my own hands because even after getting a diagnosis of P.A. ( private doctor ) after a very long time , I could only get a three monthly injection which wasn’t sufficient . Honestly £1.00 is so cheap .

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Thank you i will try again with her. Xx

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I completely understand your anger - but from reading other similar stories I have concluded you will meet brick walls time and time again.

I too have had a neglected health history but choose to use my energy improving my health and doing positive things. Battling for years could make you more poorly.

Hope things continue to improve 😊

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Agree but those useless doctors deserve to be "put right"! So angry by their unwillingness to help and their incompetence...

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Had i sued every Doc that had given me a bad diagnosis throughout my life I would have retired 40 years ago and be lying on a beach somewhere with my dosh in a Tax Haven ..... :-)

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Think I would be lying on that beach with you.... and many, many others... ahahah!

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I completely understand and feel the same as you but I think it is very very difficult to prove anything, at least it would be for me. Complaints procedures seem to be geared to individual practitioners whereas this seems to be a problem with policies and problems within the medical profession as a whole regarding the status of the disease, diagnosis and treatment.

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I can understand your anger. My experience is that litigation can result in financial compensation but rarely changes the people who caused the distress. It is usually a long, drawn out procedure and is very stressful.

If you want to proceed, a good lawyer, working on a "no win, no fee" basis is the person you need. They usually take 10% of your final compensation ( often described as uplift) and their legal fees will be paid by the other side, if found in your favour. If you lost the case you wouldn't have to pay any fees as they'd be covered by an insurance the lawyer sets up.

As an example, a friend sued an NHS trust, they eventually received about £140k compensation, the lawyer's fees claimed from the NHS trust amounted to about £50,000. It involved a lot of stress. She had to travel, at her expense, to be seen by different doctors including psychiatrists. She also had to hear a lot of lies from the Trust's lawyers, which were extremely upsetting. Just be prepared for the long haul., which can take 5+ years.

Although she eventually received money, the people at fault just disappeared to different jobs, no one was disciplined and the worst "offender" ( can't think of a better word, sorry) was actually protected --- they refused to reveal his/her identity and even manipulated paperwork in a court.

I hope you are now getting effective treatment.

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Oh my, i am so sorry you got the same terrible care as a lot of others, i have gut issues and am B12d and if i didnt pay for a test i would still be like it, i also self inject in between their treatment as it is not enough.

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What test did you pay for ? I have gut issue been tood sibo which can deplete b12 but still not better. Seeing autonomic dept as i get swell spasms seeing endo about tgyroid...

But going back n and on if my gut not fixed i dnt know why im not getting injections

Have spasms fatigue ear ringing brain fog . Tingling . Heavy arms mood drops weight loss allergies ... just want it sorted x

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They have changed their website, i have eventually found the B12 testing page where you can order the tests, its up to you which one, i would choose the third one at least, i paid online and then printed off the paperwork, and went there on the train for the test its in the hospitals blood testing place that everyone goes to. They are brilliant and helped me no end. I am now dx and on 8 weekly b12 injections. I am unsure if you still have to pay extra for the blood to be drawn but think it was about £20/£25, its an expensive business, but what price is our health. I got the results in about 7 days.

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Hi Fudgemanjim,

Total emparhy with you... and understand only too well how the useless doctors are fobbing parients off all the time! WHO do they think they are? They are nothing more than uncaring materialistic vultures.... all they want is money... and status!

So sorry you have been treated so badly, unfortunately it applies to most of us. So pleased you are slowly recovering some quality of life.

Where do you live now?

As for suing them, totally understand your feelings and justified anger, but as wedwood said they always close rank! It's appalling they can get away with murder times and again!!!

Good luck with your recovery.

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Am so sorry to hear about your experience and the terrible care.

I have also gone through this and believe that the operation (2006) that I underwent disabled my vitamin b12 function as I was not absorbing to start off with.

I also had to give up my job and was bed ridden and house bound with a 4 year old child at the time. The first neurologist presumed it was exhaustion just because I had a young child, can you believe that. He asked for funding so he could do further investigations which was rejected. I was too ill to do anything, I had all the symptoms of very severe chronic fatigue syndrome. For 10 years I was house bound, in bed and could not care for myself or my child. I used to crawl on the floor. I have been left with all these other illness as a result.

I did a DNA test which indicated that I had problems fully absorbing vitamin b12 and also found out that my ggrandmother had died from PA at a very young age of 28 years.

10 years later (2015) the second neurologist realised that all these years I was vitamin b12 deficient and started me on the vitamin B12 injections which took 2 years to kick in.

The people responsible are all protected and I believe it all comes down to the fact that there is no profit. Sadly I believe we are just numbers. This is my experience. If I could, I would also sue.

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So sad to read your post .... hope you are recovering ....

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That’s so dreadful , what you have been through ! How did you manage to keep sane through it all?

You kept going because you had a child .Hope that you make a full recovery . At least you have friends on this site who understand now . Best wishes

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So very sad... Yet another exemple of the medical negligence in this country.... Do hope you will be able to make some kind of recovery, at least a better life quality.

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Hi Fudgemanjim,

Im sorry you have had so bad a time of it. I`ve been there on behalf of my late husband.

In this country you have to jump through loops. First complain in writing to practice manager then complain to regional health board then take complaint to NHS Ombudsman(who is advised by GPs) 98o/o of cases are Not Upheld!!! If you have the stomach for it after all that you can then go down the litigation route.

I was advised that I would need at least 120K to cover legal costs if I lost as the health boards would be awarded costs.

I can tell you they keep each others backs covered I was shocked at how many lies were told by GPs, Consultants etc everyone involved.

Good luck and better health.xxxx

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These doctors have no moral fibre. Of course they keep each other's back covered! To add insult to injury they are grossly overpaid for such poor service....

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Years ago I was being medically discharged from the RAF, when I was going around with my discharge form I had to be signed off by RAF Wroughton. The medic I saw asked me what I was going to do on leaving. I replied I had secured a job and would also look into sueing the Army as what I was being discharged for could be plainly layed at their feet. I was immediately stopped from continuing with the medical discharge and informed I was fit for duty and to go back to my job. After leaving six years later all my medical records were deemed lost when I registered with a civvy Doctor. Never ever trusted any doctors since. So good luck with your case.

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Doctors should never ever be trusted... because they rarely put the patient first! I should know.

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Years of no diagnosis and treatment have left me seriously compromised and I struggle to work enough to keep myself solvent (I am self employed) so have no spare time or money but...

If I could I would contact the media and try to raise awareness through medical investigation programmes - Panorama, Trust me I'm a Dr, etc, etc, and hi light the problems and incompetence that way.

I too would like to have their "think they are God" attitude universally questioned as they will only become less powerful and less dangerous if the public looses their blind faith.

There are many others, including lawyers, who have been affected by B12 deficiency and would like something to be done, who belong to the closed Facebook group PA/B12 support group.

If you started something, I'm sure there would be lots of people who will contribute and help.

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Sorry you are yet another "victim" of medical neglect...

You are quite right in saying it is high time there were TV programmes exposing this shocking attitude from the medical profession, and NOT just regarding B12 (some of us have other health conditions as well as PA/B12 deficiency, like thyroid conditions, etc.) so that a CHANGE of care should be brought on as soon as possible.

This will only be possible if patients come together and bring on a much needed revolution to the way people are treated by doctors. It will not change by chance, that's for sure. We all need to come together and say ENOUGH is ENOUGH. But will this happen, who would carry enough authority to help us and how can it happen? That is the question....

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Thank you. Well said.

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Four years ago, I started to go downhill, forever got a chest infection, ear infections etc. On 1 Jan 1915 my husband said to me you are not going into work, I couldn't keep warm, couldn't even walk down the street without stopping, got a doc's appointment, came away with antibotics, still no better week after, got told by another doc in practice, ear infection, more antibotics, still no better week after, telephone consultation week after, told middle ear infection by that time I was using a dining chair to help me walkabout in house, told me to have bloods done, I got appt with nurse, the day of appt I was throwing up after everything I ate, cancelled appt and made one for week after, surgery phoned to say no nurse available, had to travel to the branch surgery, my pulse, blood pressure was all over the place, nurse got doc to look at me, he did my pulse and bp again, asked where my husband was I said that he was at work, was told that I needed to go to hospital via ambulance. The A & E doctor took my blood samples from me, a couple of hours later, she came back said that I needed to be admitted (four blood transfusions), she said blood count should be at least 150, mine was down to 3, consultant told my husband that my body was starting to shut down slowly another couple of days and I would not be here. The doctor who misdiagnosed me with other things, when she saw me in waiting area, she could not look me in the face, the doctor at that time, agreed to me having injections very 8 week, as my body couldn't go the 12 week, but some much damage as been done, pins and needles, lung damage, dizzy spells, the brainfogs, the constant fatigue, but some people say I look fine and dandy, but they don't see everything that is going on inside. Was finished throu work on medical grounds, used to work for NHS back office, but having to fight to get my pension on ill health, for the last four years I have to fight everybody because no one believes me!!!! Sorry for the long post but I get fed up with NHS England and partners saying that injections only every 12 weeks, my nurse (at new surgery) said that if we feel that we need injections we should have them and not have to suffer or fight every one. Thanks for reading

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Did you make formal complaint to NHS about all involved in your misdiagnosis?

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What a negligence from doctors! Unfortunately too many people's health problems get neglected and ignored by these useless doctors.

How did such a neglect affect your lungs (you mention lung damage)?

Do hope you are feeling better by now. I would urge you to made a formal complaint to the NHS about this dreadful situation, the misdiagnoses by several doctors, if you haven't already done so.

I also understand that when feeling so ill it takes too much energy but unless the useless doctors are exposed many times over by many patients nothing is likely to change in the culture of "All blood tests are NORMAL" when in fact they are not and the lab actually states "below range" or "above range"...

Good luck and best wishes to you.

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I understand how you feel. I'm in the U.S.. Worst symptoms were blood pressure in stroke range daily, much too rapid heartbeat, pins & needles, leg pain, lose of taste/smell. Blood tests were always normal for everything, so my GP & emergency room docs didn't take it seriously. Would just bring pressure down & send me home. My GP said I couldn't possibly have PA because my B12 was normal. Was told at ER that it was anxiety, & I was advised to see a psychiatrist. I finally had a mild stroke this past New Years Day. That led me to changing doctors. Found one who actually listened. Started B12 regimen even before doing tests because he recignised my symptoms. I started improving immediately! Wish doctors were better at listening & would trust that we know our bodies. 😕

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What were your heart related symptoms if you dont mind sharing.. I'm having mild random chest pain that does not last long but enough to make me feel depressed.

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Despite neuro symptoms, weight loss, hair thinning, insomnia etc I was kept waiting to long for the alternate day B12 injections I needed to reverse neuro symptoms, stuck with Tinnitis and altered sensation in feet, insomnia, brain fog. All this despite promptly giving my GP the briefing note supplied by PA Society re unreliabilty of B12 blood test, my treatment was still delayed for week and weeks and guidelnes regarding treatment of neuro PA symptoms ignored. I think a few of us must think about sueing for medical negligence. Might wake up NHS regarding the poor standard of care many with PA experience.

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Is there some way to go about group sueing? We all dont get much id assume.... but maybe it sends a message about PA issues thyroid issues and related stuff... and id think its much harder to tell a large froup of fellow suffers its in mind or there all wrong if all simlar stuff? I dont know though...oh amd sorry haventrespomded to the many questions on here...much is goung in with lawers and so on

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