I've just opened a letter from my doctor explaining that they have taken my B12 injection (every three months) off repeat as I am self injecting - 'we cannot safely prescribe any further from the practice'. What a load of s**t!
I only started self injecting because they refused to treat me as per the guidance for neurological symptoms even though my doctor agreed that I had them.
Since I've been self injecting, I've been to my doctor and told her about the decrease in my symptoms. Obviously how well patients respond to medication means absolutely nothing. I've lost all respect for the doctor's in my practice
Rant over... pass the needle!
Written by
Jennie16
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Really bad that so few GPs are really capable of working with their patients - really does nothing to build up a relationship of trust and without that the whole concept of a GP really doesn't work.
At the moment I'm going to stick where I am as, fortunately, my doctor is just about to go on maternity leave and her cover was the doctor who diagnosed meas B12 deficient in the first place!
Thats not good at all! I do feel for you and hope it leads instead to you finding a better doctor.
I guess it serves as a warning to be circumspect with doctors who aren't open to giving correct treatment according to NICE guidelines or who don't have time to educate themselves on B12 deficiency/B12.
oh dear me. I am so sorry - it doesn't pay to be honest - when I told my gp I had been forced to get a privateb12 injection I was shown the door. I had it because although I had begged for one before a holiday, it was refused. I too have bad neurological symptoms. oh what CAN we do?
perhaps it's time as individuals to start naming and shaming the GP practices. If they are not going to help us then there is nothing to lose. Perhaps reporting / writing to people like the BSH, GMC, NHS England, Wales etc, NICE etc. These GPs hold our lives in their hands but for the requirement of a simple, safe, cheap treatment that could kick start life for so many people.
I spoke to NHS England some weeks ago and the person I spoke to was very helpful. She said that the new guidelines should be implemented at Primary Care level and told me which pages to show my GP. I haven't done so yet as waiting to see if she refers me to a Haematologist. If not then I will take some form of recourse. It's not good enough.
Hya Lisahelen yes you're probably right. I just find it strange why they dig their heels in about such simple treatment that could have such a major impact and benefit to so many. I sometimes wonder if I'm missing something here. I wonder where common sense prevails at times on my journies round consultants and health people.
After my doctor initially refused to treat me for neurological symptoms, I wrote a letter to the practice manager with my request citing the guidelines. She passed it straight to my doctor (after 'losing' it, only 'finding' it when I rang to say I would be at the surgery within half an hour with another copy to put directly into her hand!)
I then had to ask my doctor to share my letter with the senior partners otherwise no one else would have seen it! Not that it did me any good. She showed it to only one of the partners, so there has been absolutely no discussion about my request. I think they just decided I'm an uneducated hypochondriac woman who sticks needles containing 'who knows what from the internet' into her body for the fun of it! This is despite the fact that I've not been to the doctors for years and I took the ampoules of B12 I bought in to show my doctor.
Next step is a letter of complaint. Wonder where that will end up?!
I just found a number on NHS England website and rang it. I thinks it's a call centre but the lady was actually very helpful and did check out the web pages re guideline treatment on their site. I'll try and find my notes and let you know as I usually keep stuff. Probably be tomorrow though as I'm a bit tired tonight. I also spoke to NICE but although very 'nice' (ha ha) they don't seem to carry much clout with anybody.
NICE seemed to think it was down to your local Clinical Commissioning Group as to whether they would fund it or not! So the dots don't seem to be joined up really. I think we probably know that don't we!! xx
Hi Sallybones. Indeed we do. To make it worse, my GP (who is refusing B12 for neuro symptoms) is Chair of the Clinical Commissioning Group!!! Judge, Jury, and Executioner. Good day's work!!
Don't worry about finding notes - I know how short the energy supply can be - I'll get the number from the NHS England website and do what you did.
Hi Foggyme. Well I couldn't find my notes-doh!! Anyway if you or anyone else still needs a link to their main contact page it's england.nhs.uk/contact-us/#
Fairly sure I rang the main number Tel: 0300 311 22 33
The pages I spoke to them about were on NHS Choices site
I know then, in true British fashion we have to have layers of management, it's split in to regional offices, then your local authority, then clinical commissioning group of which our GP practices belong.
So Foggy your situation sounds rather interesting with your GP / CCG. You shall have to be complainant and lawyer!!
We used to have a fantastic free & confidential advocacy service in my town and they helped me out with all kinds of situations, without which I would have sunk at the time. Many were to do with health and I found that no one really listened to me until I took this advocate along. Like flicking a switch. Also supported me at my benefits tribunal, twice. Sadly they lost funding but on the whole I can stand up for myself now. CAB were no help but I suggest to anyone to see if there are any advocacy services available locally.
I learned you had to forget your pride and stop worrying what anyone thinks about you. There are a lot of kind helpful people if you seek them out. You need energy to do that of course.
I'll stop rambling on now as it's nearly bedtime for me.
Glad the injections are still going unstingingly well. Onwards and upwards. xx
Which pages did the NHS England advise ... new guidelines??? Saw both Haematologist and Neurologist and both refused to advise my GP of the proper treatment for B12D with neurological damage. In fact, the Neurologist advised stopping the regular three-monthly B12 injections after 12 months to see if the B12 levels had improved!!!! Sooooo .... don't hold your breath if you do manage to get referred to a consultant, even privately!
E-A-S you're not alone. I paid for a private consultation with a gastrologist. He had no understanding of B12 deficiency, much less the neurological symptoms that can go with it. His comment was 'you walked in unaided. B12 is for people in wheelchairs!!!!!!
Waiting to see a NHS consultant and neurologist....but certainly not holding my breath. In fact, dreading it!
How bad is that...when we live in almost abject fear of having to see the very people who are supposed to help us.
Tomorrow is another day...so, onwards and upwards.
Shocking Jennie16 you cannot "overdose" on B12 and your doctor should know this. I take it you are not diagnosed with P.A.? (Sorry - I hadn't read that you were B12 deficient) edited
I have explained the impossibility of having 'too much B12' to my doctor and to a gastroenterologist!
I've been self-injecting for about 15 months.
Surely the big benefit of self-injecting is that you DON'T go to the GP for the injection - you take control of your own health,
And also - looking back on the ten years or so when I was getting B12 injections at the GP's surgery - I was usually given it by a very bossy Practice-Nurse who didn't believe in it (and once managed to have them stopped for some months). It's far less degrading to self-inject and to stay well away from the GP.
I am lucky as I know one of the nurses well and she is very sympathetic.
I would rather the doctors were doing their job properly in the first place so that I didn't have to self inject. I'm only following the guidelines that they should have been following.
I now also have the problem that they are refusing to monitor me too. That's fine for B12 levels, as far as I'm concerned, but I've yet to find out if they will test other things, such as potassium which I am already low on.
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