I just received a phone call from my new practice in response to my request to self inject,no problem at all they will provide me with the sharps bin ,needles and b12 I need and doc has put it on repeat. I have to say I’m really surprised I expected a firm no lol.It must have been the way I worded my request I guess.I cited COVID as a good enough reason not to want to visit a surgery in case of cross infection so main thing is I got a result I wanted and hopefully it’ll help others rather than us being told no b12 injections because of COVID.
The battle for frequency can be fought another day.Result eh lol?
In all honesty it definately wasn’t the one I saw last week he was a proper nitwit,I wonder if it was the actual nurses they seemed nice but a bit lacking in b12 knowledge.I got a text message tonight saying my script was ready I only discussed with her today so super efficient in fairness to her.ty
That's brilliant to hear! I bet you're possibly a bit stunned and relieved by their response. It's lovely to find a GP/surgery that listens to their patients.
Yes your right I am stunned bearing in mind the gp I actually saw couldn’t get me out the door quick enough,it’s got to have been a different one who authorised it I’ll need to do my miss marple and nvestigate when I collect 😂
Maybe the GP who couldn't get you out of the door quick enough wanted to look up B12 deficiency as he was too proud to admit he was out of his depth - and found the Pernicious Anaemia Society website !
I love hearing about another practice doing the right thing; whoever actually authorised it, the real initiator was you. Well done, Thrones, it's never easy, is it ?
Hi Cheryl that’s a lovely thing to say thank you.On the day I saw him I felt so down hearted as I genuinely had high hopes for this practice as I saw so many wee touches online that seemed quite innovative to me and I was really disappointed as again I felt not listened to and rushed out the door so I kind of thought to hell with it ,I’ve nothing to lose with theses guys by pointing out they’re putting me more at risk by asking me to come down for injecting when I’m perfectly capable of doing them myself.It wasn’t the right time to debate the frequency or the fact that I already self inject so I made the decision not to challenge them.One step at a time is enough for me just now as I still have the private appointment with a neuro so I have more challenges ahead but I’m determined to plod on.All credit goes to the reception team and the nurses I think ,it was just great to be able to email them and they acted really promptly.ty x
Nurses are more likely to keep seeing people at their worst I suppose - when patients are most in need of their next injection. They can't fail to have noticed that the standard frequency given isn't working particularly well for some patients.
Most of the suspicion surrounding treatment frequency seems to stem from rumours that B12 is highly addictive. I have no idea where this started, but have heard it repeated, with some air of authority, by consultants who should know better than to pass on unsubstantiated gossip.
If they feel at ease "warning" patients, they are probably repeating the same to GPs when they call for advice.
That's when you have to hope that your GP realises, as we do, that you are on your own with this, and have to dig deeper if you want to get to the truth. We have to also hope that the GPs challenge them at this point.
BNF advises that patients presenting with neurological symptoms get injected on alternate days until there is no further improvement. How long do damaged nerves take to heal ? For those unlucky enough to have inherited a rare inability to get B12 into their cells, the advised frequency in consultants' reports is two injections a week for life.
This would certainly not be the advice given if B12 was known to be highly addictive.
I have never found any research document suggesting that this is the case. The onus has to be put back on these experts to prove that this statement has supporting evidence. These rumours are detrimental to your health !
Once you get to know the GPs a little better, find one that you trust will do your fighting for you, stick to that one- and, with their support, concentrate on getting your life back. Someone there probably joined the practice as a GP for the same reason that you joined as a patient: they liked their ethos.
Maybe we need to set up a b12 friendly list of doctors. When they get inundated they might start to realise how much we are struggling. Really pleased you found someone to listen to you Thrones.
Thats very good news. My GP was also happy that I self inject starting 3 years ago. No syringes and no clinical waste bin though. Not happy when I began to inject every other day though and I had to firmly stick to the BNF guidelines - still not happy with me but thats life. I wish GPs would listen more and I am so glad yours has.
Yes indeed - I had to insist on this as he repeatedly said I should not continue despite my repeated evidence of many symptoms being strongly reduced. I ended up saying firmly that I was going to stick to the BHF advice and not stop till I could see no further improvement.
Mines are three monthly Bellabab so ive not argued I’m happy to have made some progress but I will continue self injecting every other day because that’s the frequency I need to keep the symptoms bearable and every three months I’ll collect my script etc from gp,it’s a small battle won for me I’ll leave the war for another time as I’m hoping my neuro appointment will help at some stage.x
That’s excellent news, I’m really pleased for you. Hopefully other surgeries will follow suit. Mine said a resounding ‘no’. Glad someone is getting somewhere with all this though!
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