B12 now reinstated: A few of you might... - Pernicious Anaemi...

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B12 now reinstated

8 Replies

A few of you might remember my writing in November and February to say surgery refusing my B12 for PA.

I have now been reinstated after having a argument with GP and receptionist.

I will have to wait outside surgery until a nurse comes and gets me due to Coronavirus- I don’t have a problem with that.

It is worth writing to your surgery, as suggested on here) tell them the damage it will do to your health if you don’t have B12. It worked for me. Once that letter is in your file and on record, they will have to reinstate it.

8 Replies
clivealive profile image
clivealiveForum Support

Well done Hidden you've set a good example and I hope the appointment goes well and safely

in reply toclivealive

Only thanks to all the help on here.

fbirder profile image
fbirder

Woot!

Nackapan profile image
Nackapan

That is great news. Well done.

Shouldnt be like this.

I've had a text so should get mine tomorrow.

Thanks for posting

T C

Sleepybunny profile image
Sleepybunny

Fantastic news and hopefully an inspiration to many on the forum whose injections have been cancelled/delayed/swapped for oral tablets.

"It is worth writing to your surgery, as suggested on here) tell them the damage it will do to your health if you don’t have B12"

I agree with you that it is worth writing a letter although it may not work for everyone.

To anyone else reading this thread

Having a letter in your medical file means there is evidence that you have raised the issue with GPs. I feel it's important to have a paper trail in case there is a need for future complaint.

Always keep your own copies of any letters written to GP as GPs have been known to mislay letters.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Untreated or under treated B12 deficiency may lead to permanent neurological damage including spinal cord damage so adequate treatment is worth fighting for.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

I am not medically trained.

Laura1961 profile image
Laura1961

I wrote to the surgery quoting all the info from the PA website and received a letter back and was told that B12 was classed in the Amber list of treatments and therefore not essential as the protection of staff and patients comes first. I am going to try privately when my jab is due and have got a referral letter from the surgery to take to the Nuffield Hospital! it will cost £42 for a phone consultation and £25 for the injection. Hopefully they wont have shut by mid may when i am due!

helvella profile image
helvella in reply toLaura1961

So they are protecting you from everything else but inflicting damage by refusal of B12.

That makes sense, doesn't it?

We have seen all sorts of colour lists - and they use them as a headline "It's amber/red/black/any other colour - so, no, you can't have it." You are supposed to acquiesce in their decision but have no actual information or basis for doing so. Unless you know the full definition of "amber" in this context, it is just five letters with no intrinsic meaning.

Cherylclaire profile image
CherylclaireForum Support in reply toLaura1961

Of course protection of all concerned is vital -and this includes your own safety- but your determination alone should be an indication to them of how necessary you consider maintenance of your B12 treatment to be.

If protection of staff and patients is a problem, the obvious safest solution would be to continue the treatment and method by prescribing patients their own B12 and injection supplies and then teaching them (remotely) how to self-inject at home during this pandemic.

Or just recommend a video, such as the one where a GP demonstrates self-injection

(link on Galadriel1's reply to distractonaut's post "Picking up where I left off" a couple of days ago).

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