Have you also considered putting any concerns about treatment into a brief, polite letter to GP?
In UK, letters to GP are supposed to be filed with medical notes. Letters could contain symptoms, test results, personal and family medical history, extracts from UK B12 documents/articles, info from PAS etc.
Keep copies of any letters written. It is useful to have a paper trail in case there is a need to complain in the future.
May be worth informing local MP of any difficulties in getting treatment and contacting AMs in Wales, MSPs in Scotland and MLAs in Northern Ireland.
People whose injections have been stopped/delayed may want to think about drawing GPs attention to the potential for permanent neurological damage if a person is under treated.
If people start to suffer deterioration in symptoms due to injections being stopped/delayed/swapped for oral tablets I think it is important to keep GP informed.
If I need to do this I will be writing brief letters informing GP of any increase in/return of symptoms.
Impact of Pandemic
Unfortunately this is an extremely hard time to argue for reinstatement of injections.
Many on forum have had B12 injection stopped/delayed or swapped for oral tablets during Covid crisis.
Many on this forum have been put in a situation where they have no alternative but to source their own supplies and self inject.
Injections stopped due to pandemic
Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.
Some people get injections from private GPs and some find that high strength oral b12 eg tablets, sub lingual lozenges, sprays, drops help a bit. I think most people on here find that injections are more effective than other methods. Some on forum source their own supplies and self inject.
At the moment, GP surgeries may argue that these are exceptional times and they cannot offer injections at the surgery. Some on forum have asked their GP surgery if they can be taught to self inject.
WHO (World Health Organisation) classifies B12 as an essential medicine so in my mind, people should not be denied treatment.
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable
3) Successful treatment should not be stopped
Symptoms Diary
I think it's worth keeping a daily symptoms diary which tracks changes in symptoms over time and when any treatment is given. It could be useful evidence of deterioration ( or improvement) in symptoms that could be shown/copied to GP if necessary.
I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, info about PA tests, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
I am glad that your practice have (albeit very reluctantly) changed their minds about your injections because of your strong fight, and it is lovely of you that you have offered to help. But you should not have to and they should not have to ask you.
I am getting increasingly angry that only someone capable of such a fight can get their injections reinstated. This shouldn't be a one-on-one fight. This shouldn't be happening.
Can we stop having to beg individually for our injections ?
I remember a time, and I doubt if I'm on my own here, when I could not carry out my own research, I could not concentrate sufficiently to read even in the library, I couldn't understand what people, including my GP, were saying to me, and would not have been able to put a coherent argument together to save my life.
These are the people who are currently the most vulnerable; the ones who do not yet know what exactly is wrong with them, what it might mean not to have an injection, and who to go to for help. What B12 is and why it matters so much when you're deficient.
These people haven't all found us yet - and we were them once.
Can everyone who is capable of writing a letter, on behalf of all those people not yet able, please write to their Practices to ask that B12 injections not be withheld from anyone who has had to rely on them previously ?
Even if you self inject and no longer need the NHS frequency yourself - which, after all, will probably be the reason that you are able to put a letter together in the first place.
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