I have PA and my surgery has just cancelled my B12 injection which was booked for tomorrow. They have a new policy as of today of not doing non-urgent routine stuff and count B12 injections in that camp. They said to call back next week.
I was wondering if anyone else had encountered this? And what alternatives I have to waiting for my surgery to allow me in for an injection. Can I self-administer? Is that a thing in the UK now?
For some time my GP has allowed me to self inject (the practice was short of nurse appointments and I found it hard to get an appointment outside work hours so it worked for us both).
The GP provides me with a prescription for a box of 5 vials of B12 and initially they gave me a handful of needles, syringes and alcohol wipes. I was told I had to source these things myself subsequently, along with a sharps box which I have done.
Might be worth phoning to try to arrange the same if you feel you could self inject.
Thanks JanD236! I think you're right - I just need to take the plunge and self-inject. It'll give me more autonomy in future, too.
To be safe, I just followed Foggyme's advice on the thread below and ordered some hydroxocobalamin. My partner's up for injecting me and we've spotted some youtube videos.
healthunlocked.com/pasoc/po...
If my experience is anything to go by it might be wise for everyone with PA to order at least one pack to get us through a few months of uncertainty.
B12 might be good for the immune system, so it's probably a good idea to keep up with the treatment somehow. At least very low levels can affect the number of white blood cells, and you don't want that with the virus spreading.
Because the virus is predicted to be around for some time, maybe a year, they should be happy to help you self inject. B12 for PA should be considered essential treatment, not something you can do without for an extended period of time. Strong supplements seem to work for some, but is uncertain and it might be better to continue with something you know works for you. This is not the time to stop an essential treatment!
I think it's awful to treat your b12 Injection as non urgent. I'm currently due mine on Wednesdsy. I cant even get the washing in. Also waiting for my own supplies now.
Non urgent!!
I hope you are relatively well to wait.
Hope they agreed and prescribe for you but that wont be immediate
I've finally ordered my own. Had decided before . Glad you have too.
At 78 years of age my wife and I are self isolating
I'd been concerned how I'm going to be able to get my B12 injection done at the surgery in two weeks time so my wife Gill 'phoned the surgery hoping to see speak to the phlebotamist who gives them but was called back by my doctor.
The surgery is "closed" to patients with doctor's appointments - they are now "dealt with" over the 'phone - and only the nurses are "working" on site dealing with those who need regular ongoing treatment - dressings,. injections etc., so it is "considered safe" for me to go and have my jab as usual as the waiting room will be virtually empty.
We asked about the option of Gill doing the injections and the Dr agreed it could be done (even though "illegal" in the U.K.) so as the Govt has today decreed we need to be in in isolation for three months (or maybe four) it may be necessary for her to do it.
I wish all my "fellow sufferers" well at this difficult time
We asked about the option of Gill doing the injections and the Dr agreed it could be done (even though "illegal" in the U.K.)...
What utter hypocrisy. Insulin - even for children - OK to inject and guidance given. Drug users - OK to inject and many exchange schemes.
It is not illegal in Britain. When I told him I could do it and happy to do so, my GP readily agreed to my self injecting . He had the nurse check out I was doing it correctly for the first jab.
I do believe they are right to have the surgery as empty as possible. The new self isolation advice is too little and at least two weeks too late.
Thank you Clive, you and your wife keep well too. I hope you get your injections sorted quickly.
That's always a worry, espresso ially if you need to learn to self inject, wishing you well Smish and hope you get this all sorted. X
I work at a gp surgery and we are doing the same. They said if anyone isnt happy with this a gp will call them and give a script for tablets in meantime. I gold them how wrong it is and they dont understand but nobody will listen
Got Informed us yesterday not appropriate to self inject ( we both have monthly injections) husband due at 8:30 this morning
We shall ask why it’s not appropriate etc
Our self isolation from others begins this week in it for the long haul self sufficient for approx 9 months not only to save ourselves but to help protect the NHS
So watch this space as I am going to champion this for us all well for those of us that are able to be sensible and inject without major complications that may arise ( no other serious illness that may need other treatments)
I’m going to try to push it up to the top out of the long grass once and for all ironically this extreme situation all us P A sufferers have is not only for the over 70’s but imagine how sensible it would be if our ‘official’ injections were approved even if only temporary to be self given so we DONT have to be a burden on the precious nurses time etc
If we don’t turn up for our ‘official’ injection as we are self isolation are we going to be seen as refusing treatment then run the risk of either being ill or if as many of us do SI any way be taken off the NHS regime because we stopped theirs so we miraculously don’t need them as we didn’t report in sick with our symptoms
You’ve got the gist well I’m on the crusade this morning best clothes on full make hair and I’m on the case for us all you may feel the shock waves ripple from sunny Dorset all the way to Westminster
Take care buy an extra freezer borrow funds if you have to or we’re all off to hell in a hand cart anyway
Will report in later lighting the touch paper this morning
Then hopefully the rocket can go up all be it a slow start but let’s DO This
There that’s the brave talk over
Now coffee shower and get my best dress out 😊
Good luck with your efforts; really hope you succeed.
Good luck, sending you big hugs and good vibrations! 🤗
I must've been lucky, I received mine Wednesday with no problems thank god. (Scotland)
I am in Scotland too but was told I couldn't get mine for 6 months.I struggle to last 2 months so if I didn't self inject I would be he'd bound by then.
I’m currently getting a loading dose. Got my 4th one yesterday even though the surgery is mainly closed. (Scotland) Back in tomorrow for another one. I’m thinking these are classed as essential.
Hubby had his last week thank goodness - next one due in May. I wonder whether it’s worth trying an oral supplement too from now to try and keep his levels up even slightly!
I believe lots of surgeries are doing this. If corona doesn't get you your declining health will. I intend to SI and I'll be telling them good look but my advice is be your own health carer while this is all on.
My injection was scheduled for last Friday and it was cancelled. They told me to call back well into April to reschedule. My symptoms are creeping up on me and last night was terrible.
I’d rather risk getting the corona virus by going to get my injection now than deal with these awful symptoms. It’s already a risk being anywhere but home.
Maybe it is the right time for the PAS to try to discuss self-injecting becoming UK policy?
Currently this is forecast to go on for months. Everyone in the UK who needs NHS B12 injections will reach their next injection time.
At the very least a formal statement that it is not illegal!
Hi All,
There are some comments about this issue of B12 jabs being cancelled as considered non-urgent under the PAS news item from 4th March.
"Pernicious Anaemia and the Coronavirus".
pernicious-anaemia-society....
Thank you! I'll give it a read now.
I am amazed that GP surgeries can get away with this. They sure are not dealing with any viruses.
Im due mine next week, now you have me thinking whether mine will be cancelled. I onlly mentioned to the nurse the other week about slef injecting and she wouldnt even listen to me, or give me any advice. So not only have i diabetes and worried about this bloody virus going round, i now am worried of not getting my B12 injection.
I'm sorry to have worried you. I would assume your appointment will be kept until you hear otherwise. However, if you check the link to the other post about self-medicating, you'll see that there are options to do this without the say so of your GP/practice. Shouldn't be necessary, but maybe get the resources in just in case (if you can afford it).
Hi smish, its ok you didnt worry me, it shocked me that the drs dont take b12 seriously. Im going to phone mine this morning to see what is happened. Take care.
How did you get on?
smish, i managed to get it 
just phoned up at 8 o clock i got an appt at 12 o clock. What a relief that was my friend
Hi,
If you do have problems getting your B12 jab see the blog post I mentioned in my post further down the page.
It has ideas for what to do if B12 injection is delayed due to being considered non essential treatment.
Thank you very much Sleepybunny
That’s absolutely shocking. I’m due a smear. That’s routine and no urgent so is correctly being delayed. A B12 injection is not “routine”, it’s essential for health. That’s like saying you will take away someone’s medication as it’s “routine”. And you can’t give tablets to someone with PA. I think complaints to the practice managers are needed. And see if you can get PAS involved.
Hi Smish. I telephoned my surgery to ask about my due B12 inj and was asked by the receptionist if I could go without it due to them being busy. I said the only problem was that all my symptoms were displaying and I was concerned about them worsening. She said “OH” with great surprise as if I was talking about about something trivial. I asked if I could have my prescription for B12 and I would self inject., but I would need health and safety guidelines to do so. She got me an appt straightaway for the following day...... !!!
Hi,
Hope all of you on this thread find an answer.
The blog post below from B12 Deficiency Info website has some ideas for what to do if GP surgery delays your B12 injection because it is considered non essential treatment.
Hi again,
Have a look at this most recent news item from PAS website. It has info on what to do if B12 jabs stopped.
Covid-19: Letter to Health Ministers and injections being stopped
Morning everyone. Just wanted to let you know that the nurse at my surgery was amazing and negotiated with the doctor for people with PA to get their injections so, while it was over a week late, I'm very pleased to say I'm sorted for another 9 weeks or so.
The bad news is that the receptionist attempted to fob me off without speaking to the nurse or a doctor, saying "can't you just buy some vitamin tablets?" If it helps, this is what I said that led to me being put through to the nurse: "I have an auto-immune disease called pernicious anaemia that means that my stomach lining can't absorb B12. Without injections there is a risk of neurological damage in the medium term, death in the long term and fatigue, cognition issues, increased anxiety and depression imminently". The nurse was already aware of all this and negotiated for PA people to come to the surgery one-by-one for their injections with a system that meant we didn't need to touch the doors.
The nurse also gave me sharps and supported me in learning how to self-inject (I ordered ampules after advice on this forum). She was so lovely I burst into tears!
Good luck everyone.
Aw that's great you got help.I prefer to self inject after a traumatic experience with a GP who had me in tears so I no longer have any confidence in my surgery.I get my regular injections there but top up myself.The nurse told me that the doctors are always complaining about time wasted giving b12 injections as it's not cost efficient.
Great that you were listened to and were able to cope with ill-informed receptionist.
I do worry what will happen to people like me who have no confirmed PA diagnosis or diagnosis of other condition known to affect B12 absorption such as Coeliac disease, Crohn's disease etc.
At least I have the resources to self treat but not that's not true for everyone.
My B12 injection was postponed on 30th March..I feel very tired and my muscles hurt..they told me to call back after Easter to book a May injection..
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