B12 self injecting advice

[onyx33]

Could anyone self injecting IM B12 please explain what the usual NHS procedure is to ensure a patient can do this capably before they do this alone at home. I have been unable to find any NHS guidelines online.

[JanD236]

There aren’t any guidelines.

I asked my GP if I could si as nurse appointments were hard to get. He happily agreed. I did say that I’d book a final nurse appointment to ask them to show me how to si but in fact I never did.

My GP let’s me have a prescription for a box of 5 vials every 5 months. After giving me a handful of needles and syringes from practice supplies, he said he wasn’t able to let me have further supplies due to legal complications. Nor was he able to help with the disposal of used needles etc.

At the end of the day to receive a prescription for a monthly vial of B12 I count myself one of the lucky ones.

[onyx33 in reply to JanD236]

Thank you for the info, if you look up NHS staff training poilcies re im injections, they have to have annual refresher training. I hoped someone might have come across, NHS policy on patient si. I was surprised I couldn't find one, the NHS usually has a policy on everything. It is possible to cause injury with im injections and the NHS definitely does not allow staff loose on patients with no training, so surprised they would allow patients loose on themselves with none, maybe the legal complication was he learned you had not followed through with seeing the nurse to show you what to do. Interested to hear from anyone else who has any experience or info on this subject.

[JanD236 in reply to onyx33]

No, he was definitely referring to the supply of needles.

[Ritchie1268]

My Dr knows I SI & my nurse showed me how & where to inject.

I took my full sharps box to my dr's surgery yesterday & they did me a prescription for a replacement one to pick up from Boots tomorrow.

I asked if I needed to carry on going to nurse every 3 months for an injection as I do it myself & was told to carry on for now.

I get all my B12 from Germany.

[fbirder]

At my third loading dose I asked the nurse about doing injections at home, to save my time, their time and the NHS' money. SHe said she would show me how to do it there and then. I had to pass on the preparation bit because I didn't have my reading glasses, but I did the jab myself after she had filled the syringe.

The next time I did it all myself and she called in a student nurse to watch as she'd never heard of patients injecting themselves.

[onyx33 in reply to fbirder]

Reading everyone's different experiences, it's clear we have been shoved into a grey area regarding si, we don't know what the NHS policy is to enable us to do this safely, there just doesn't seen to be one, which I think is quite shocking really.

[wedgewood]

Every Surgery is different . My doctor was appalled when I said I wanted to S.I. He said more than 1 injection every 3 months would be TOXIC ( yes , that’s what he said!) . No help at all . Had to watch utube videos , some of which were awful . Anyhow I got the hang of it eventually!

So you can’t always expect any cooperation .

[Ritchie1268 in reply to wedgewood]

You're so right wedgewood.

Even though my Dr wouldn't agree to give me injections more often than 3 monthly due to thinking I had to have a blood test to check my levels, which were obviously within range at that point, I guess I'm one of the lucky ones.

[onyx33 in reply to wedgewood]

I was told B12 was toxic too, I'm interested in the subject because it seems partly the block that prevents the every other day treatment needed when neuro symptoms appear. Every other day appointments for possibly weeks is using a lot of appointments slots. I think if we could use the equivalent of an epipen and do B12 subcutaneous injections our treatment would be revolutionized .

[SunnyWorld in reply to wedgewood]

Toxic 😂😂

[onyx33 in reply to SunnyWorld]

I know it's crazy, but it is evident that it is not uncommon from replies to be told this, very frustrating because all the information GP's need about B12 and how to respond to neuro symptoms is in the BNF.

[Ritchie1268 in reply to onyx33]

We can all hope this will change in the future.

Even every county in UK is very different even though the BNF is the same.

I believe it's just luck of the draw but it shouldn't be which Dr you see but it shouldn't be.

The nurse that showed me how & where to SI said she did B12 deficiency as part of her training.

She asked if my Dr had referred me to a Haemotologist due to my symptoms & was shocked when I said no. Due to her contacting my Dr I now have a neurologist appointment at end of the month.

She said the laws in this country are crazy, as if I lived in other countries I'd be getting every other day injections till symptoms improved.

This is the exact reason why loads of us SI as we all know the alternative.

[onyx33 in reply to Ritchie1268]

Exactly, when deficient enough for neuro symptoms to appear and mood to be affected I think if a GP said we had to take our own appendix out to recover , we are so desperate we would give it a go because life becomes a living death and I think many of us many of us think we might as well just die but wouldn't have the energy to act, It's not an active suicidal intention just a kind of despair.

[Trooper4765 in reply to wedgewood]

I have an injection every 4 weeks B12 is a water based injection and I would not class as toxic!! A lot of famous actors and actresses inject every day it’s a well known fact. I would check this out with a blood specialist or the Pernicious Anaemia Society themselves

[onyx33 in reply to Trooper4765]

I knew when I was told by a doctor that B12 is toxic that it wasn't he would only have had to look in the BNF to confirm this but judging by how many of us are told this, the level of ignorance about this illness and how to treat it amongst NHS doctors is astounding.

[Trooper4765 in reply to onyx33]

I totally agree the doctors are not really aware of all the symptoms that a lot of us suffer it is disgusting really. Obviously not taught in there curriculum or scathed over as insignificant.

[wedgewood in reply to Trooper4765]

We all know that it’s not true . There is a scientific paper on it to download . But I reckon that the TOXIC reason was given to justify not giving any extra injections which I really needed as the symptoms of P.A. were returning so quickly .

[Hidden]

The NHS, and the UK medical profession are opposed to people self-injecting B12.

BUT -

1. That isn't so in America, so there's plenty of advice on Google and YouTube, and it's very easy.

2. Once you' ve given yourself the first injection you can go along to your local Needle Exchange, and you'll get massive support from them; including free NHS-issue syringes; the one that I use is Addaction, Cobbold Road NW10, and they are absolutely fantastic.

[onyx33]

I know there are you tube videos, I did the same thing but I have come to realize that this whole area is very poorly regulated by NHS, I could find no guidelines, usually patient care is governed very strictly in all areas, so why no published policy for us.

[Deetha]

Twenty something years ago my brother in law was diagnosed with PA and was given prescriptions so that he could weld inject. Not sure when that changes and why though.

I buy my own B12 and needles etc and taught myself and also gained very useful knowledge and hep from this forum.

[onyx33]

But none of us should have to teach ourselves, the NHS does not expect staff to teach themselves, they have I assume one to one I annual training which they have to do to continue treating patients by injection.