Cyanocobamalin 1mg B12 Injections withdrawn by NHS?

[clivealive]

I was diagnosed with Pernicious Anaemia in May 1972 forty-six years ago and put on cyanocobamalin injections every four weeks for the rest of my life.

When hydroxocobamalin was introduced in the 1980s I had an allergic reaction to it and I have continued with the cyanocobamalin ever since although because of a return of some neurological symptoms in the run up to the next injection I now have them every three weeks.

When my wife went to collect my normal repeat prescription (5 vials) of cyanocobamalin yesterday the pharmacist said she could not dispense it because of a directive from the NHS forbidding it and said that the only option was to get a "private prescription" (at what cost?) from my doctor and then I could buy them from the pharmacy for £17 per 5 as she has them in stock.

The pharmacist volunteered to 'phone my doctor to explain the situation as my wife was at a loss to know what to do and knowing how much I needed the injections.

Having spoken with the senior partner at my practice the pharmacist rang my home later (speaking again to my wife because of my deafness) to tell her that he had "authorized" that the prescription could be dispensed and a note placed on my records at the pharmacy that any future such prescriptions should also be dispensed without question.

I'm not sure quite how my doctor managed to "over-rule" the NHS but I am grateful and relieved that he has. Maybe he decided that the surgery could bear the additional cost.

Photo - that's me aged just 18 a few months after the gastric surgery in 1959 that led to the P.A. 13 years later and I'm still "clivealive"

[Sleepybunny]

Hi,

I wonder if PAS might be interested in hearing about this? There may be other people like you who cannot tolerate hydroxycobalamin injections who may now be in a difficult situation.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

BNF link Cyanocobalamin below

bnf.nice.org.uk/drug/cyanoc...

[clivealive Forum Support in reply to Sleepybunny]

Thanks Sleepybunny for the links.

I have been a member of PASoc for nearly ten years but I'm guessing that there are probably only a handful of people like me still on cyano. I had enough of a fight to be able to remain on them when hydroxo was introduced.

Yes the second link says it all - it "gives" on the one hand ("By intramuscular injection

For Adult

Initially 1 mg every 2–3 days for 11 doses; maintenance 1 mg every month".

and "takes away" on the other ("National funding/access decisions

NHS restrictions

Cyanocobalamin solution and Cytamen® injection are not prescribable in NHS primary care".

Take care now and thanks again.

[Gambit62 Administrator]

sorry to hear that this has happened.

Doctors are allowed to dispense off license which is probably what has happened. May have been some jobsworth at the pharamacy looking at the BNF and noticing that cynacobalamin isn't actually licensed and acting on that.

£27 for five phials is ludicrous - why on earth would it cost that much! Makes you wonder if the NHS is being ripped off by suppliers of B12 in the same way it is being ripped off by suppliers of thyroid medications (which has lead to the restriction of T3 to prescription by endocrinologists only).

May be you should ask the pharmacist why the price was so high given that you know you can source it from Germany for 2% of that cost.

[trelemorele in reply to Gambit62]

No, no, that's not how it works....

You get market price on a medication for the public, NHS has it's formulary and pays by that book so the price is completely different.

I.e. antibiotics costs pennies and are generally cheap, somewhat around paracetamol price, i.e. for 7 day course it's 20-50p per box.

If you get NHS script for sat amoxicillin you pay 8 quid plus (but NHS is charged only 20p)

If you get private script - whatever pharmacy set their price for themself - 1 quid or 20 quid..... etc

[Gambit62 Administrator in reply to trelemorele]

but the £17 is for a private presscription which should be issued at cost plus a markup not for the NHS prescription which has a charge of £8 ... and is free if you are diabetic or have certain other conditions.

Sometimes it can be cheaper to get something issued on a private prescription than on an NHS prescription. The price of £17 has to have come from somewhere but it is a lot more than the course of sourcing ... and the price that the companies get for the prescription can be a lot higher than the price that you pay if you go to a reputable supplier outside the UK. Many thyroid patients can get T3 much cheaper from on-line pharmacies than they can if they got a private prescription ... and the NHS would be free to them. The NHS is restricting T3 because it is too expensive so somebody somewhere must be making money.

[trelemorele in reply to Gambit62]

If 17 quid is for the medication on private script than this is the price that particular pharmacy set to charge for that particular medication to the public (not NHS!). There is no should or shouldn't. It's free market every body can charge what they please.

You can go online or even on foot and try to find cheaper pharmacy and you most likely will.

I was responding to that part you raised that NHS is being overcharged on b12 injections price and explaining how it works:

Just because you pay 20 quid on private script in a pharmacy for paracetamol, doesn't mean NHS will pay the same.

[Gambit62 Administrator in reply to trelemorele]

sorry but there is such a thing as monopoly and a lot of legislation to guard against it.

The example you are giving doesn't really fly as paracetamol isn't a prescription only medication and anyone with any sense would go to a supermarket if the pharmacies started charging that rate.

[clivealive Forum Support in reply to Gambit62]

Thanks for your kindly advice Gambit62

Sorry - I had misread my wife's figure (blind deaf and nearly dumb - that's me) for the Pharmacy cost of cyanocobamalin - it should have been £17 for a pack of five vials. I have amended my original post - but even so it is a huge increase.

Ironically it was the same "one size fits all" doctor that I had to fight tooth and nail against six years ago to get an increase in the frequency of my injections that gave his approval for the prescription to be dispensed.

Mind you I've been a patient with the same practice for 52 years and am on the "Friends of ********* Surgery" committee which raises funds to provide necessary equipment for the benefit of patients that they say they cannot afford ....

Thanks again - keep well.

[BethattheBeach]

Good on your wife for helping to sort this out. Honestly, this is a crazy situation to be in. PA remains a mystery disease - it is a mystery to those in charge!