My partner, who has terminal cancer, and who has been receiving B12 shots every month for the last 20 years (give or take the few periods when the surgery messed her about) has just had her B12 shots reduced to 3-monthly.
No consultation, no warning, no nothing. The district nurse came round to administer the injection but wasn't allowed to - and hadn't been told that the frequency had been changed: no yellow card was available so no shot for my partner. They came again to do it this month - but still hadn't got the message that it had been changed.
I complained but the surgery reckons we were all informed, but they are lying.
We have B12 in the fridge from eBay so my partner did it herself.
If anyone on here thinks they are safe from such capricious decisions then please think again. Go on eBay or wherever and get yourselves some spare B12 ampoules, just in case, is my urgent advice.
You can imagine our annoyance, but also should bear in mind that it doesn't matter too much - because we took the precaution of not relying on those who really don't care. I urge you all to consider the contents of this message.
Written by
SnappySam
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I was diagnosed with PA in 2005. I have other chronic illnesses too, also RA .
The then Gp said I would need monthly injections for life. Sadly he retired earlier this year and my regular nurse went too.
This month I went for my monthly injection with a new nurse who questioned why I had monthly injections, I tried explaining but In the mean time she had also sent a template to another gp in the practice to ask why. She has now said because my levels (serum b12 and ferritin) were above the higher level last year, she is not permitting monthly injections and has written a note on my records to a three monthly injection.
The Gp (who isnt my appointed gp) has also noted that because of the readings last year I am at risk of neuropathy due to hypervitamin B levels.
Am totally stunned by both your reports! On two counts: one the level of ignorance & two that the protocol of injections over rides the clinical need.
In your shoes i would write a formal letter to the practise manager making a complaint. I would politely point out that testing for b12 after injecting is unnecrssary and pointless as it gives a false reading. Testing goes against NHS guidelines etc I would point out the need for injections on the frequency you had before. I would say there is no known cases of overdosing on b12 as you excrete out what you dont need and ask them for an explanation snd medical evidence for this allegation. I would then point out the consequences of lowering the frequency of injections, the long term damage it can cause if not injecting frequently enough for you. If they are planning to lower your injections request the medical and clinical evidence behind their decision. Request your letter be put on yout medical file. This puts them in a position of accountability & liability if they are making a decision that could cause you harm.
Its sad and wrong that we have to fight for necessary medication.......but am afraid it seems to be the way these days. Ive had to do it three times now over my chronic conditions. You can be sure that ignorance is at the back of this decision, that it is not based on good clinical evidence based medicine and they are quite likely to back down once challenged. In the meantime self inject.
Cheers for that - good advice for some who will see this thread.
I'd take a different approach if I were to tackle it - which I would be tempted to if circumstances were otherwise. County Court claim is what I have said I'd do on here previously. May sound a bit mad but legal stuff is something I like doing and something which those on the receiving end may find hard to deal with - doctors and practice managers, for instance.
As I explained, I wouldn't expect to win in court - it's all about the hassle that can be avoided for the sake of 60p a month (cost of B12) by not letting it get further than a letter before claim.
Thanks Snappy. Am so sorry about your wife and that you are being put through this unnecessary additional stress on top of everything. This is a time when you should feel you can rely on the medical profession for support & for giving your wife the best treatment they can. Such actions must undermine your confidence in them doing so. You are right the timing is all wrong to take this one on & quietly getting on with self injecting is the best way forward. The medical profession should be ashamed of themselves. Big hugs.
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