B12 germany: As anybody wondered... - Pernicious Anaemi...

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B12 germany

14 Replies

As anybody wondered whether revealing they buy b12 ampoules from abroad are being exposed to the possibility

Of prosecution . Or does purchasing ampoules for one's own use legal.

And wonder how many Doctors frequent this website ?

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14 Replies
helvella profile image
helvella

Why would anyone be prosecuted?

It is entirely legal in the UK to purchase from abroad prescription-only medicines (by UK standards) for use of self and members of your household.

The issues start with Controlled Drugs and B12 most certainly isn’t a CD! Or with passing them on to anyone not a member of your household whether or not payment is involved.

Plenty of doctors advise/suggest patients to purchase prescription-only medicines from abroad. Especially of the doctor has issues with prescribing (e.g. regarded as too expensive for NHS to pay).

in reply tohelvella

Thanks for that, never broken the law in my life.

So the Doctors in this Country actually know that

Thousands are being brought from abroad, but they themselves cant give more B12 injections because of guidelines by the inappropriately organization's named NICE forbids it.

Once again thanks, would hate to think I was opening my self upto prosecution withdrawn raids from the police

😱 😜🤪

fbirder profile image
fbirder in reply to

Doctors in this Country actually know that

Thousands are being brought from abroad, but they themselves cant give more B12 injections because of guidelines by the inappropriately organization's named NICE forbids it..

No. NICE doesn't forbid doctors from prescribing B12 more often. Nobody forbids doctors from prescribing it more often.

The British National Formulary gives the recommended dosing regimens for all licensed drugs in the UK. Doctors are supposed to stick to their recommendations - unless they believe it will benefit their patients to go outside those recommendations.

This practise is called off-label prescribing. And any doctor can prescribe any drug off-label if...

They believe it is in the patient's interests.

The patient is fully informed about why they are being prescribed off-label.

The doctor is sure that prescribing off-label will be safe.

So, your doctor can prescribe B12 as often as they like, as long as they think it will be of benefit to their patient. That's how I've got two doctors to agree to prescribe injections every two weeks.

So it's not the system that's to blame. Its the GPs.

in reply tofbirder

Yes I agree, that's why what I have endured as one Doctor told me was substandard treatment.There are things that happened best not mentioned on this website .

After over 15 years on injections to give me 50mcg of oral b12 three times a day is a joke.

I now have all my old symptoms back.

I just hope I dont go on to have another 3 mini strokes.

Nackapan profile image
Nackapan in reply to

Insist on your injections back. I too was given 50mg b12 tablets to try.

Injections were not stopped . It was an attempt by Gp to reduce them.

The trial failed

Sleepybunny profile image
Sleepybunny in reply to

Apologies if I asked you before....

Have you considered writing a brief, to the point letter to GP about your concerns?

May be worth sending a copy to practice manager.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates that people can base their own letters on.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter. Proof a letter was sent may be useful if there is a need for formal complaint.

I included a request in letters that a copy of letter was filed with medical notes.

My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.

Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.

Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.

Keep copies of any letters sent or received.

"I now have all my old symptoms back."

Worth including a list of symptoms that have returned since your treatment was changed especially any neuro symptoms/spinal symptoms.

May also be worth drawing GPs attention to risk of SACD if patients with b12 deficiency are untreated or under treated.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Nackapan profile image
Nackapan in reply tofbirder

Yes I agree totally. I have b12 on prescription 2 weekly.

Its also in my notes I do them subcutaneously at home .

Go to the surgery for IM .

As wasnt sure initially if sc woujd stay in my system long enough .

It was to reduce trips to the surgery ,save my arms and save nurses time

It also costs me for the prescription although 'free' if I go to the surgery

clivealive profile image
clivealiveForum Support in reply to

My doctor continues to prescribe cyanocobablin B12 injections for me even though it is no longer prescribable under the BNF "rules"

in reply toclivealive

Dont move you've got one of the best.

clivealive profile image
clivealiveForum Support in reply to

:) I've been with the same surgery since 1966 - that's 55 years and been on B12 injections since 1972 so coming up to 49 years

This was my doctor back in the sixties and seventies who cared for my family throughout those years, was created a Dame for services to mental health and died in her nineties only a few years ago, In the picture she was playing the organ at my younger daughter's wedding in 1988 which she had asked to be able to do.

Lady in shady colour
Cherylclaire profile image
CherylclaireForum Support in reply toclivealive

That's a lovely story, Clive.

Donnadancer profile image
Donnadancer in reply to

Oh, well said ! You have cheered me up xxx

Sleepybunny profile image
Sleepybunny

Hi,

Link to article about off licence prescribing

gmc-uk.org/ethical-guidance...

G_Jones profile image
G_Jones

I ordered Vitamin B12 Depot & received from Germany on Tues - as the "patient notes" are in German - I thought I would send a message to the manufacturer asking if they have the patient notes in english - here's the reply I just received - which is now worrying me....the email address this was received from is this.

pharmacovigilance@panpharma.fr - and the message:

"We thank you and acknowledge good receipt of your request regarding Vitamin B12 depot Panpharma.

As our Vitamin B12 depot is distributed for use in hospitals, could you please tell us how you purchased this product?

In order to process your request correctly, could you also please indicate us the batch number of the product and send us a picture ?

Thank you in advance for your help.

I remain available for any further information.

Best regards."

So - it looks like something which is legally available ? over the counter in Germany - should not have been sourced by a UK resident ?

I've not replied & am inclined to ignore it - but it is quite worrying....

I could have had my friend in Germany source it for me & post direct to me - he has offered - but I do wonder whether there are UK exclusive things going on here...

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