Feeling lost

Hi everybody. I need some help. Feeling a little lost as what to do for the best.after weeks of going to my doctor he finally diagnosed pernicious anemia after a repeat blood test coming back low.He agreed to 6 loading doses one a week then one every three months. He has now cancelled all my appointments and told me to go to another doctors. Basically he has chucked me out and my family. I am going to register with another doctor but feel I will face the same problems all over again. So I am thinking of self injecting but am out of my depth with wear to buy /how many I should use/ what else should I be taking/ and who to see about nerve damage as I am struggling with lower spinal pain and stiffness. Any help would be much appreciated as I am feeling very nervous about what to do next.Xxx

56 Replies

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  • No medical help from me - sorry, but am horrified at your GP's treatment of you. Did he give any reason for throwing you out.

  • His reason was lack of trust. And as for my husband and two small children our address is out of the catchment area. I only joined the practice two years ago and we haven't moved. So don't know how that works. He is so patranising in his attitude. B12 is addictive my hair loss is just bad luck everybody is tired he has people that are dying ect ect. Thanks for the response makes me feel that somebody else thinks his actions are disgraceful.xxx

  • Wow! What a jerk!

  • Ah ah! Lack of trust! That's a good one! So his ego was dented.... How can one trust a useless person who is both unwilling and unable to help patients?Trust is earned not blindly given.

    Typical: they want it all: have their cake and eat it... and not doing too much research in order to give patients some quality of life... Too many of these quacks should not be doctors at all...

  • You should make sure to get a copy of your records from the doctor that has dismissed you. You are entitled to have them but you may be asked to pay a fee to make the copies. It seems rather drastic that a doctor would throw your whole family off his list.

    You might want to hold off on self injecting since you plan to register with a new doctor and a new doctor will probably want to do new tests.

  • Thanks for the response. I asked for my notes and said he couldn't give them to me and when I register with another docket that send them. Have a suspicion he will put something in them to say I am a problem patient. As he seems he'll bent on causing me trouble. Xxx

  • Make a demand in writing for ALL your notes (you will need to pay up to £50 and it takes a few weeks, but if you only want notes from past 3/6 months it will cost less), and keep a copy of letter. You can actually add this to letter to Clinical Director, and ask if it is normal and acceptable for a GP to throw you and your family out of surgery because you expected to receive treatment.

    Don't let that egotistical idiot bully you! Complete lack of respect and NO compassion.

  • £20 per page I'm work for a doctor

  • Doctors can't charge £20 per page, they aren't allowed to by law. Someone who asked for copies of their entire GP record in any format can only be charged a maximum of £50.

  • That can't be correct... Making more money on poorly patients' backs... Think you've got your pricing wrong.

  • Hi Sharnbarwick28 that is disgraceful. Can you at least get a copy of the medical record showing the diagnosis of Pernicious Anaemia so that you can take it to your new doctor?

    What reason was given for "chucking you and your family" out?

    It sounds to me like cost cutting as you will need the injections for the rest of your life.

    I do hope you get sorted and wish you well.

  • I think you are right on the cost cutting issue. Seemed to get his goat when I mentioned it to him . I offered to pay if this was the problem I still can't believe what he has done. I just hope to god my new gp has a better understanding pernicious anemia

  • I believe you are entitled, by law, to have a copy of your records. You may, probably have to pay for them. (Someone please confirm this and provide a reference that says you are entitled to them.)

    I think you should get them before you go to a new doctor. Can you take your husband with you when you demand them and take a print of you entitlement.

    I hope you get a lovely, helpful new doctor. Can you check with neighbours, friends what their opinion are of local doctors.

  • Thanks for your response. I am doing all of the above. Hopefully get it sorted soon .He has diagnosed me on my notes I have seen it and started a treatment plan I had 3 injections over three weeks. On my fourth appointment I arrived to be told that it had been cancelled. And to find another doctor. I have received nothing in writing in the post. But the GPtold me he sent a letter to say I was off the books. X

  • OMG!!! 3 injections over 3 weeks? That is not the treatment according to NICE, BNF, BCHS guidelines and PAS recommendations! You should have had the loading doses of 6 injections over 2 weeks...

    Phone Martyn Hooper, Chairman of PAS in Wales, he should be able to help you and that quack should be removed from practice and his licence withdrawn... but we know this won't happen, and HE knows it too.

  • " B12 is addictive my hair loss is just bad luck everybody is tired he has people that are dying ect ect."

    This is the same old rubbish that so many GP's say. It comes up time after time. (And he has probably killed them ! )

  • Apparently ther are no symptoms to b12 deficiency 😢 It took all my strength to be calm and collected. If that's what your go thinks what hope do you have. Probably for the best as I can try and find a sympathetic go.x

  • Sorry gp

  • A sympathetic GP... you'd be very lucky. They are as hard and uncaring as nails.... Indeed we need a compassionate and efficient and helpful doctor, after all that's what they should be... but...

  • Hi, yes you can get a copy of your medical notes under the Data Protection law. I asked for my Mum's from her GP and they provided them within 10 dsys free of charge. They are entitled to charge a negligible fee, I think £10 but they do have to give you a copy. It's the law.

    nhs.uk/chq/pages/1309.aspx?...

    Hope this helps

  • This is awful, and it's frightening for all of us to think this can be the outcome of simply trying to get treatment for a health issue. It's a problem for everybody that chronic health issues are lumped together in the doctors' day with, as he said, emergency or terminal cases. I think chronic health patients should be seen in a separate clinic myself. We shouldn't be forced to compete for treatment with other patients and made to feel guilty.

    Re. what he puts in your records I don't know if it's too late to send a calm, objective letter to the surgery outlining your side of things, as if you're still on their books I've heard they'd have to put that letter in your records?

    If you mentioned the cost of the treatment, he MIGHT have thought you were suggesting that his decision to treat/not treat was based on financial rather than medical grounds, hence the lack of trust? Just guessing, but it would have been better if he had talked to you about this rather than just throwing you and your family out.

    If he put the diagnosis of PA and outline of treatment in your records you should be on stronger ground with the new GP. It's good to have your first injection/s at a surgery as there's the very slight chance you may have a reaction.

  • Not all doctors are like that! When I moved to a new area I asked if I could have a brief chat with a doctor at several surgeries. About half agreed, and I warned them I was awkward and one laughed and said if I knew it, I wouldn't be that bad. Guess where I went? Of course they are as ignorant as any other, but at least they are nice about it.

    Once you have moved I suggest you make a formal complaint against the doctor. If he has diagnosed you, finally, he should be ashamed of himself. It won't do any good by itself, but if evidence mounts up they will at least tick him off.

  • Thank you it means a lot . I have been to see my local mp and she has told me how to complain and she mentioned other people had told her this doctor was rude and incompetent.

  • That is really interesting, isn't it? Do you have a local facebook group? You could ask there for anyone who has had bad experiences to contact you. And there is Nextdoor too. If a group of you write together you CCG should take much more notice than if they only get the odd one. And you can bet your bottom dollar that for every one that goes to their MP there are half a dozen who didn't!

  • Ah! Yes, should have said. You ask if anyone has any experience of Dr X. Anything negative please send a private message.

  • I'm not suggesting public complaints. Just ask people to get in touch with good or bad experiences. No other comment. We get that on my local b group regularly.

  • We know he will only be told "there, there, not a thing to do"... and that will be it and give him licence to carry on as usual! We patients have not protection against such useless and incompetent doctors!

  • Hi

    I am bouncing off the chair with rage I cannot believe the patronising and unprofessional way your gp has treated you. Could I suggest on top of the great advice from these good people on the forum, you join the pernicious anemia society and send your sorry tale to Martin Hooper if you haven't already. I am so mad I cannot type for my shaking hands (not b12 problem I had my injection today) 😨self inject as I have had similar results at my own practice. Please know you are not alone and there are so many good people on this forum

  • Thank you for your message . I have joined and spoken to Martin over the phone he is the reason I got my diagnosis ...eventually.. what a lovely man. My plan is to join another practice . See what ther attitude is towards it and self inject if it's not enough. And just not make a big deal about it to them, Then make a complaint against my old gp. I am Not going to disappear if that's what he thinks. But I still need advice on wear to buy the b12 from and the needles ect and what to take along side to make the most of it. I had a consultation with a private GP and he said he would teach me how to self inject. Shame I don't live closer to Him .After three injections I feel a lot better but it's still not enough. Xx

  • My concern about you going down the self injection route is that I was diagnosed 45 years ago and in that time have had more than 600 injections via the nurses at my surgery - imagine how much that would have cost me had I had to fund it myself.

    Doctors who quibble about the cost and nurse's time are talking rubbish as the price of B12 is counted in pennies and I think my nurses love me because I'm in and out within five minutes of the ten minute slot allowed, so they get chance to catch up with their records and have a cup of coffee :)

    I wish you well and hope you and your family find a decent practice to join. I've been with mine for over 51 years and my original doctor there back in January 1966 is now a Dame for her services to medicine.

  • We might be getting buried under HS2 so best stay clear :(

    (I'm joking)

  • I started off in 1972 on cyanocobamalin 1000mcg every four weeks and couldn't cope with hydroxocobamalin when it was introduced in the 1980s so continued with the cyano.

    I managed to persuade my doctor nine months ago to increase the frequency to now every three weeks because of the return of some neurological symptoms in the run up to the next injection so I'm still "clivealive" at 75 :)

  • As far as I can remember back to 30 years ago I came out in a rash, had headaches, nausea and dizziness and I couldn't "last" the 3 month gap between injections. I guess my body was used to the cyano so I asked to be swapped back.

  • I have had four in four weeks. I felt so much better 😬but starting to feel low again. I know this sounds odd but I had to pay for them in the pharmacy is this normal ? Thank you clivealive your messages make me smile.x

  • Did you get a private prescription? Then you would have to pay... Incidentally may I ask how much the pharmacy charged, if you don't mind. You could message me privately if unwilling to reveal the price on forum. Am rather curious to know how much a B12 ampoule costs in UK. thanks. Best wishes.

  • What a terrible way to treat a patient! It is their job after all, to look after us and try to make us well. I hope you find a much kinder and more sympathetic GP. I believe the local care commissioning group have to find you another GP. My late parents in law were made to leave a surgery they'd been with for over 40 years. The excuse was they were living too far from the surgery to get emergency cover. I think they were moved as they were getting older and likely to be a problem. It was a lucky move for them as their new GP was lovely, and the surgery was within walking distance.

  • It's nice to know ther is good doctors out there. Xxx

  • I'm so shocked that, even though you have been diagnosed with PA, your GP has refused to treat and you've been told to find another surgery. Words fail me! What happened to the Hippocratic oath....

    I hope you find another GP who is conscientious and less arrogant but if not, I understand why you would now rather self inject. Years of battling for correct treatment for thyroid disease and B12 deficiency in our family left me unwilling to face another stressful experience, knowing that many GPs are reluctant to read and understand latest research or prescribe essential B12 injections for neurological symptoms.

    I ordered B12 Hydroxocobalamin B12 DEPOT ROTEXMEDICA 10x1ml) from this German company - press Union Jack to translate and pay by PayPal.

    mycare.de

    Needles, syringes, Sharps bin, etc. From Medisave or Amazon.

    For IM :

    Green needles to draw the solution up into the syringe - amazon.co.uk/gp/product...

    Blue needles for the actual injection - amazon.co.uk/gp/product...

    2ml syringes - amazon.co.uk/gp/product...

    Sterile wipes - amazon.co.uk/gp/product...

    This link gives good information on various sources as well as Medisave link - 10th reply down (hidden - Marre) :

    healthunlocked.com/pasoc/po...

    I hope all starts to improve for you Sharnbarwick.

  • Thank you so much for all the information and links. Il will be ordering straight away. It's so frustrating isent it . When your filled with dread for your next appointment. Feeling much more positive today thanks to everybodys comments.xx

  • 👍 So good to feel independent, be able to treat symptoms, not have to beg for more frequent Injections and know that it is completely safe.

    Am feeling more positive day by day.

  • Did you not tell that nurse YOU were that "special" person? What an idiotic thing to say.... They have NO respect for patients and treat us like children... Disgraceful. We must rebel against this appalling attitude. We deserve respect and treatment.

  • Medical doctors are not obliged to swear the Hippocratic Oath .

  • I believe most doctors do make a promise on graduation embracing the spirit of the oath though....

    to do everything possible to help their patients and to have high moral standards in their work.

  • I agree with all the other posters here. This is so disgraceful.

    To diagnose, start a treatment, knowing it which will be for lifetime, but then to withdraw treatment and totally discard you!

    Was this GP a partner of the practice, or a 'trainee' GP (aka 'registrar')? If the latter, well done for getting the diagnosis and starting treatment.

    However, I wonder if someone (more senior, ie partner) in the practice has told your (x)GP that this practice doesn't treat B12 (cost reasons) and to 'get rid of patient & family' using said excuse???. If you are out of their catchment area, then they shouldn't have accepted you and your family in the first place. Surely, by accepting you in the first place, they can't use that as a reason to get rid of you?

    It's just totally immoral and I suggest it's possibly not that particular GP that is doing this. If this is the case, that GP won't be at that surgery for very much longer and unlikely to be kept on there. Could be s/he may become one of the most sought after GPs in the future, known for understanding and diagnosing etc ;) You just never know ...

    You're clearly best out of that practice but I would certainly put in a complaint, including copying in CGC and GMC

    {{{Hugs}}}

  • Unfortunately this gp runs the practice . And the only reason he diagnosed me was I insisted on a re test as I had been taking a oral form of b12 . He finally agreed but said he wanted to put a end to this 😳 In other words prove me wrong . The first blood test was 600 the second two weeks later was 169. just glad I have been diagnosed. Hopefully my new gp will be a little more understanding .x

  • OK, that's my theory got out of the window ;)

    However, at last you've been diagnosed and so know what the problem is. You've had 3 injections, so have you felt better for them, even if short-lived? If so, further proof that you're needing B12 injections. Also, proof that your GP felt it was appropriate treatment at the time.

    I agree, don't self-treat until you have had a definitive 'diagnosis/confirmation' from your new GP in case of him/her wanting further/repeat tests, as any further treatment will skew any results, although your recent injections may do this anyway.

    Like you, but in a different way, I'm struggling to get a diagnosis, feeling rotten/poor quality of life and significant/obvious hair loss, but do they care .... ???

    I wish you the best of luck. Hope you get appropriate treatment very quickly and can get a life back. :)

  • Fairly pointless putting a complaint at the GMC ... they are all doctors supporting each other 110%.... sadly. The patients have nowhere to complain.

  • I feel that copying in someone higher up, whether or not they may be sympathetic, can often have the required affect.

    The main recipient of the complaint will never know if 'higher up' might just follow it up so will it can tend to 'encourage' them to be a bit more proactive regarding dealing the complaint. ;)

    Call their bluff ... ;)

  • Hi Sharnbarwick28 I have sent you a private message (red spot after your name at the top)

  • Hi,

    So sorry to hear how you have been treated. I had a similar experience, although I wasn't chucked out, it was made clear to me that they would prefer me to leave.

    I think it's helpful to have proof of the PA diagnosis. There have been people on this forum who have been diagnosed with PA in past and then at some later point had injections stopped and have struggled to get them reinstated because of lack of proof.

    nhs.uk/chq/Pages/2635.aspx?...

    Access to medical records

    nhs.uk/NHSEngland/thenhs/re...

    england.nhs.uk/contact-us/p...

    "He agreed to 6 loading doses one a week then one every three months"

    I am puzzled by this because it is different to the pattern of treatment recommended for PA in BNF (British National Formulary).

    Details of UK B12 treatment in links below?

    1) BNF Chapter 9 Section 1.2

    evidence.nhs.uk/formulary/b...

    2) BSH Cobalamin and Folate Guidelines

    Treatment info is about a quarter through document.

    b-s-h.org.uk/guidelines/gui...

    Do you have neurological symptoms eg tingling, pins and needles, balance issues, memory problems, tinnitus etc?

    If yes, b12 injections should be given at shorter intervals. See BNF link. Quite a few on this forum struggle to get adequate treatment for B12 deficiency with neurological symptoms.

    B12 deficiency Symptoms lists

    pernicious-anaemia-society.... see Checklist

    b12deficiency.info/signs-an...

    Unhappy with treatment?

    CAB

    Citizens Advice Bureau may be helpful to talk to.

    citizensadvice.org.uk/healt...

    list of CCGs

    nhs.uk/ServiceDirectories/P...

    Complaints to CCGs

    citizensadvice.org.uk/healt...

    Parliamentary and Health Service Ombudsman review

    citizensadvice.org.uk/healt...

    NHS Choices

    People can leave reviews of their GP practice on NHS Choices. I think this can be done anonymously but I think it is important to avoid anything that could be construed as libel or slander. There is a section for ratings/reviews by each GP practice. Can be helpful in choosing a new practice.

    nhs.uk/Service-Search/GP/Lo...

    I was once told (can't remember by whom, so may be incorrect) that any letters of complaint about a particular GP are discussed at GPs performance review.

    Removal of Patients from GPs list

    I thought that Gps were not allowed to remove you during the course of an ongoing treatment but I might be wrong about that. Perhaps MP would know?

    parliament.uk/mps-lords-and...

    bma.org.uk/advice/employmen...

    Above link gives timescale for removal of patient.

    nhs.uk/chq/Pages/2556.aspx?...

    The NHS link above says that patients should not be removed just because they've complained.

    GMC complaints

    gmc-uk.org/concerns/complai...

    PAS

    PAS may be interested in hearing what happened to you.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    Sadly there may be stories on Martyn Hooper's blog that may be relevant to you.

    martynhooper.com/

    There are several PAS support groups in UK. They might be a good source of info on helpful GPs in your area.

    pernicious-anaemia-society....

    B12 Deficiency Info website

    The person who runs this website is supportive and can be contacted by e-mail.

    b12deficiency.info/

    B12d.org website

    b12d.org

    I am not a medic just a person who has struggled to get a diagnosis.

  • I am very puzzled, what is a gp's roll in health care ??

    What exactly do they do .

    Your story of the gp you had is a disgrace to anyone in the health service

    Hope you get sorted 😘

  • Why has he thrown you out?

  • "asked for my notes and said he couldn't give them to me "

    My understanding is that you have a legal right to get copies. The only reason a GP can refuse is if he/she feels that giving you access/copies could harm you in some way. I guess it's possible that if he has already removed you from list then he could argue that you're no longer a patient of the surgery.

    Perhaps your local CCG (if you're in England) or NHS England could tell you how to obtain medical records from a surgery where you are no longer on the patient list. Your MP should also be able to find out for you. Might also be worth reading up about Freedom of Information requests.

    "And as for my husband and two small children our address is out of the catchment area"

    Personally I'm of the opinion that if he accepted your family in the first place, knowing they were out of catchment, he cannot change his mind a couple of years laterbut i could be wrong about this.

    GPs in UK are allowed to accept patients out of catchment area.

    nhs.uk/NHSEngland/AboutNHSs...

    "I know this sounds odd but I had to pay for them in the pharmacy is this normal ? "

    I thought NHS B12 injections didn't have to be paid for in Uk. Did you ask pharmacist why you had to pay? Perhaps PAS would know or maybe MP could find out.

    "Have a suspicion he will put something in them to say I am a problem patient."

    You have the right of reply and can ask to have your own comment to be attached to medical notes. Sadly I don't think you can have an unpleasant comment removed but i think you can have a factually innaccurate one removed.

    patients-association.org.uk...

    pulsetoday.co.uk/news/polit...

    nhs.uk/NHSEngland/thenhs/re...

    See section in above link on "How can I get information in my records changed?"

  • Hi Shambarwick, Are you in the Pernicious Anaemia/B12 Deficiency facebook group?

    I recommend joining it and all the info for ordering supplies to self inject is on there. They also have a good doctors list. All the best x

  • Hi Sharnbarwick28,

    This is appalling! The GPs in this country are NOT regulated and checked as they ought to. They get away with murder and they know it. Their ego is HUGE... such arrogance and negligence and truly an enormous lack of knowlege and yet they are overpaid for doing (or not as is the case more often than not) for doing precious little than sitting in front of a screen, push a button to renew the "usual" prescriptions (BP pills, statins, diabetes pills and their favourite, antidepressants!.

    I will suggest to write to the Clinical Director of the Trust that covers your surgery to explain what has happened. This is not acceptable. Those idiotic so called doctors need to be put in their place. Enough is enough, we patients should not have to put up with their complete lack of care. If they dpn't like the job they should give it up and find some work in a factory... the problem is that would not pay for their kids' private school fees nor their skiing holidays and Summer holidays, neither would they receive bonuses from drugs companies...

    Yes, I am ranting again because I have had just a fight to get GP to very reluctantly agree to B12 treatment (it tool over a year and I lost 2 years of my life since I was fainting all over the place, even when sitting down, plus loss of balance, dreadful tinnitus, the usual neurological symptoms, head pain, foggy mind, etc.....

    Sadly, the NHS does not offer a health service anymore, although we have all contributed to it...

    So don't take it lightly.... fight back that bully of a doctor. WHO does he think he is? God... we know.One could easily believe there is a sort of conspiracy among GPs NOT to treat patients... ? I believe they have not got the skills to be "doctors", they like the idea and status but are unable to help anyone. Good luck and let us know how you get on.

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