Hi all, I’ve finally composed a letter to my GP to discuss reinstating my injections (haven’t had much luck over the phone, basically I’m selfish, GP lack of knowledge on treating pernicious anaemia Etc etc.)
Just wondering if anyone has had any negative feedback if they have sent in letters as well? I’m so nervous that after this letter things are going to be very difficult for me and there is only one other GP practice in the area which is rubbish so I’m very apprehensive!
Just wanted to get a feel of other people’s experiences!
Thank you
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Kaceysimo
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I feel as long as your letter was polite and to the point Kaceysimo doctors are supposed to be intelligent and should take it in the spirit with which it was written.
A few months back I sent a letter with evidence about b12 and how it helps my nerve condition And my deficiency, I explained how having my b12 injections improve my quality of life.
The letter I got a letter back wasnt bad but my gp made it out as though I was a problem and that she was doing me a favour by saying how I shouldn’t have it any earlier but with me sending the letter there was no excuse my gp could say but it was only her opinion.
I got my b12 every two months instead of three after the letter but some how it’s now changed to 2 and a half weeks and then if I ask why I can’t have it changed back they say it’s against surgery policy but I have no idea what that is and nore will they tell me.
Some people have better luck, it’s like a lottery with each doctor. Hope it works out
Thanks for your reply, I feel nervous about what response I’m going to get back, sorry they came back with the response they did. Don’t know why they feel they have to make out they’re doing you a favour, not the first time I have heard that and very disappointing.
I always feel humiliated when I talk to them, they always try to make out that I’m stupid and don’t know what I’m talking about.
Their ‘policy‘ sounds very strange, my surgery told me it was illegal for them to give me my injection earlier than 8 weekly, I honestly don’t think many of them understand at all!
Sorry you feel nervous about their reply you shouldn’t feel like that.
8 weeks is two months?
The guidelines say from 2-3 months for injections, have you had your blood checked for iron, b12, vit d, folic acid ? Not saying it isn’t b12 like the docs do but if you are low on any of those it can make you feel twice a bad.
My advice would be see if you can see a haematologist doctor or specialist and they can look into it better than a gp can
I have it every eight weeks because I also have neurological issues, I have confirmed pernicious anaemia but years ago when I was diagnosed they never mentioned I was low on anything else. They did do a blood test last year to check vitamin d but said that was ok.
Took me years to feel ‘better’ and now they’ve just stopped Injections because of the pandemic. they’ve just done a blanket letter to all patients regardless of their reasons for needing the injection it’s disgusting but unfortunately know I’m not alone.
I write regular letters. I would rather di this and have it s banned on my notes. Telephone consults have gor me no where.
I get sarcastic remarks at times . I ignore them. I just write facts.
My Go never wants to listen to my symptoms. So whatever I write for I always put current symptoms are;
The neurologist has annoyed me twice. By putting stuff in a go letter things not discussed on consult.
He stated "of course as less paracetamol used hef headaches have decreased which is no surprise.
Chicken and egg. I use less pain relief as fewer headaches!! And chose to di that rather than take the propranolol prescribed by him.
Doctors do not like being questioned about the prescription.
Without a full explanation o wont touch of.
Theses professionals are paid to treat us . Treat us with dignity ect
You write as many letters as you ike .
Dont worry about it. I used to agonising. No more.
Just sticking to the facts, what tih can do to help yourself, and what treatment do theh suggest. Di they know what the problem is.
Make sure your symptom list is there. I hope that just by reading it theh may have a eureka moment . I dont know how I 'present' but thet seem to have no idea about how ill I am.
The effort it takes to actually write. I'm left quite nauseous because if brain signalling.
Haha! I read it as what you meant to say then saw this comment! ☺️
It’s taken me all this time to be able to write it, it’s so difficult. I have listed my symptoms and hope they will start taking things seriously.
Got myself in a bit of a tiz this morning reading about the CCG and them dismissing complaints and saying tablets are fine to take. Had to stop reading stuff!!
My b12 stopped and should have had it on 4th April. Just received a letter to say the district nurse will come to my home to give it to me to reduce risk as im shielding.
Wow that’s brilliant news! Hope you’ve not felt too ill in the meantime though as you’ve waited an awful long time for an injection.
I rang up again this week and they said they’re not reinstating injections yet. I need to send them this letter though as the letter I received from them stated b12 injections were non-essential and they sent a link to a study in 2003 that was justification for them stopping the injections and they cannot get away with that.
Erm not sure think you may be able to copy a picture into comments possibly? If there’s a link you can just type it in and it should work. Thank you.
I’ve sent them guidance from Pernicious Anaemia society, our towns CCG and quoted BSH guidelines and also the WHO essential medicine, I don’t expect a response until next week now
I did but apparently years ago when I was diagnosed with PA, they never tested my intrinsic factor (which I was told they did) so I’ve had to have a blood test and now I’m negative for antibodies and don’t have PA!! I’m now waiting 6 months for another blood test, I’m baffled if I’m honest,
Haha! Thank you for this! I will be going back to them again, I’d sort of given up to be honest , didn’t really have much fight left in me but if not PA then why on Earth was I so poorly back then, all the symptoms and now after years of injections and feeling so much better to be then told it’s not that, I feel like I’m making up symptoms which is how I felt in the first place and back to the blooming drawing board!
I’m the same. Apparently my docs have. I record of me being anemic and was asked why am I on them in the first place and they have been going back to blood results which have come out find but that’s me being on the b12. It’s a massive fight
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