My daughter and I both self inject with hydroxocobalamin every 10-12 weeks. She has been doing it for 15 years, 5 years after diagnosis. I had a Nissen Fundoplication 7 years ago and started injections when blood work showed my deficiency just over 2 years ago, I began self injection after just the first routine one.
Our GP surgery has just started issuing repeat prescriptions of single ampoules rather than a pack of 5. This has several implications with one being the problem of shattering the ampoule - which isn't difficult to do - then having to get another prescription issued and filled when experiencing the symptoms at the end of the period, another being the expense for those paying for their medications as instead of just £8.60/pack it will be £43 paying for 1 every 3 months. (Not nice when the actual cost of these ampoules is £0.50).
Is this ridiculous practice just something our local medical idiots are doing or is it something those nice people as NHICE have dreamed up?
Isn't it about time this vital drug, which is about the safest drug on the market, is also made available off prescription here in the UK as it is in France, Germany and Spain to name just a few local countries, so that we can use it as and when we feel it to be necessary?
Kcbrecks that is shocking! First time I've seen it here. I just can't believe that they're splitting boxes and sending single ampoules. Not sure if that's even permissable as it means that the patient information leaflet with contraindications and warnings to patients is not being distributed (sorry, no time to check and see if there are any regulations in place about this).
Think I'd certainly raise the breakages issue with your GP. Also the issue of lack of the patient if formation leaflet - do GP's realised that they may be exposing patients to risk through lack of this information?
As for the cost 😡😡.
Shocking and shameful.
Hope someone can come up with some better reasons as to how this can be challenged.
Thanks for such a quick response Foggyme. I have just got back from a shopping trip and had a discussion with the Pharmacist at the Tesco Supermarket in Rotherham who reckons she has to cut the plastic container trays to protect single ampoules for many of their customers. As far as she knows there is no guidance which prevents the GP issuing a script for a pack rather a single. I didn't ask what she did about the patient information leaflet, mind you considering most people will have been going through this rigmarole for some years they probably don't ever look at it anymore.
I think we are only just starting with this problem with our GP surgery so it looks as if we are going to have to make sure they find the decision has suitably disruptive repercussions for them, or they think again. My daughter is a somewhat formidable woman and is as mad as a wet hen with it. We will see what transpires.
I think the response we have had that the single ampoule prescription is intended as an internal accounting measure for surgery injections is just about believable and would alleviate concerns about there not being any patient information leaflet as the nurse wouldn't need one. However it does make me wonder what is going on at other practices as one of the Pharmacists we discussed this with is happily dispensing single ampoules to individual patients with single ampoule scripts. I didn't ask if these were self injecting or then taking the single ampoule to the surgery for the nurse to administer which again would remove the need for the leaflet. I would also hope the patients concerned were not ones paying for their prescription medications as that is a severe financial burden for something they have to have or risk permanent damage or demise..
This has been a most interesting experience and the responses from this forum have not only been much appreciated but also informative and revealing. There is a concern that some of the medical profession have such incorrect attitudes and knowledge of this problem even thinking as one contributor has put that the injection material is 'highly addictive': presumably reckoning something which is demanded by the patient on a regular basis must be 'addictive' rather then 'life preserving'. Even though I and my daughter, as many others do, have taken to self injection at regular, but well spaced, intervals for convenience I would not want anyone thinking we are 'drug addicts' anymore than sufferers of Diabetes who self inject more frequently are.
So now I can say, with the backing of experts, there is no reason why anyone who self injects, and can be trusted to do so, cannot have a pack of 5 ampoules of Hydroxocobalamin prescribed once a year by their GP.
Thank you all for your attention. I am glad to have found this forum and will be happy to take part in it whenever I can offer something of value.
This is just the start of the campaign, already we are getting opinions from all sorts of different places. The prepay certificate would be irrelevant for my daughter and I am over 65 so wouldn't apply to me. We will be getting the surgery to do the injections if they won't dispense 5 packs as then they will pay for it and their nurses time with be taken up with things we could do ourselves.
There is also a petition online for getting this drug de-regulated so it can be bought over the counter without prescription as it is in Spain, France and Germany, the latter costing just 7 euros for a pack of 10. The syringes and needles are readily available here and cost very little so it would be a much cheaper option for self injecting PA sufferers than the NHS prescription route.
Once they are Off Prescription you should then be able to buy them from the Canaries and have them posted. As you will still be in the EU this shouldn't be a problem. It might be different for us here in UK when the nonsense is activated.
Oh, I've no problem getting them in the Canaries. Everyone here seems to go there on holidays. I prefer long haul ones myself though. Good luck with Brexit, it's going to affect us here in Ireland too.
Please can you point us to the campaign details, and where this online petition is? I buy my ampoules from Germany, like many on this site, as I'm only allowed one injection every 12 weeks at the surgery. I'd love to be part of the campaign so I can actually buy my vital drugs in the UK!
As you say, but then again I don't generally find the medical profession over endowed with intelligence outside the very narrow guidelines they are trained to follow.
This seems to have been prompted by the over zealous activities of certain Pharmacy chains as they have had the permission to call forward repeat prescriptions for patients and were ordering every item on the list every month. My wife and I have only used this service once and they got it into such a mess we stopped it. If for instance you have say Gaviscon Advance on your repeat list then you would get a bottle a month rather then the 1 or 2 I use per year. Now patients have to request what they actually need and that script is the forwarded to the Pharmacy of their choice. This nonsense with the Hydroxocobalamin is illustrating the exception rather than the rule.
If you see the reply I gave to my first post then it shouldn't be a problem jillcur39. Despite South Yorkshire being a delightful place to live and I can recommend it to anyone, it is a drastic solution to your problem. You do not say though if you are actually self injecting.
It is starting to look as if the issuing of B12 ampoules is somewhat haphazard. We have been prescribed packs of 5 ampoules for 2 years in my case and 15 in my daughters. They also provide the syringes and needles, but of course there is the downside as you then have to do the business yourself. I usually find I get a little shaking of the hand when I first point to
the loaded syringe at whichever of my thighs is the target for the day but as it only happens every 10 weeks or so it is soon over and forgotten.
We are in South Yorkshire, and if you don't know it, it is actually the cheapest place in the country to live, so I am told. It is also a very attractive area with the Peak District, North Derbyshire and the Dales on our doorstep. We emigrated here, from Birmingham, about 45 years ago and never once thought of going back. They do call it God's Own Country, I can attest to the sentiment if not the deity.
NICE don't have anything to do with regulations regarding how prescriptions are drawn up so not going to be them - probably some local ruling - and might even be the surgery itself.
It could be down to a rather ridiculously over zealous interpretation of rulings that medications shouldn't be issued more than one month in advance.
The issue with the patient information leaflets is a bit worrying, as is the H&S implications of having the ampoules outside of secure packaging.
At the moment Gambit62 we are just gathering information ready for a serious chat with the Quacks. It really is buggers muddle out there but as far as we can gather there is no official instruction for the single ampoule prescription. One of our contacts is a practising Pharmacist and is going to ask if there is any documentation been issued on it.
We do had appointments arranged with the surgery for the back end of next week so can report further.
I have a repeat prescription template from the surgery, issued to me last week, which includes a 5 ampoule pack of Hydroxocobalamin, so our question has to be why my daughter has one which says just 1 when she has been getting the 5 pack for 15 years.
It is one of my wife's friends who is a Pharmacy Manager who said she would check to see if the were any guidelines issued which could be relevant. I tend to agree is it probably a local ruling however we are concerned as to why this single ampoule script has been issued to my daughter yet my repeat prescription proforma, issued just a week ago with other medication, specifies a 5 pack. What ever the reason the surgery has a number of newish Salaried Partners on board and as yet none of them have had the dubious pleasure of dealing with my daughter when she is in full war mode. They are about to find out beginning next Thursday.
At my surgery they do a six monthly review of prescriptions. I have been on cyanocobamalin for 45 years and very nearly got prescribed hydroxocobamalin (to which I had had an adverse allergic reaction to it when it was introduced in the 1980s) after a review date had passed.
Fortunately I spotted the change before I requested my next repeat online.
Again (fortunately) I had an appointment scheduled with my doctor and asked why it had been changed and who had done it. To my utter amazement she said it was the computer.
Apparently the computer is clever enough to monitor our medication and choose cheaper more cost effective drugs. I appreciate that cyano probably costs more than hydrox and is injected more frequently but to arbitrarily change it could have been dangerous.
My doctor changed it back to cyamo but I keep an eagle-eye on it now.
Same happened to me only THIS week. Spotted it before I left the surgery reception and got it corrected. What if I didn't see it and just went home with the wrong injections as they all look the same colour!! I'm also allergic to Hydroxocobamalim. Five injections cost €40 in Ireland and €7 in the Canaries and no prescription needed?
Like I have said elsewhere, don't trust the surgery nor any other members of the medical profession, make sure you know what they have or are about to do to you. As a former IT manager I would say 'The Computer did it' is a very useful excuse, in the case you mention is wasn't the computer it was the programmer would didn't think deeply enough.
I have the same problem with my thyroid medicine used to get 3 months worth then cut to one. I was told it was because some people were selling there meds . Unfair
Hi shal61 - have been reading your other posts here on the PAS forum and now read that you have a thyroid issue. So many of your symptoms point to either being under treated or having a problem converting the T4/Levo into T3 - possibly due to poor nutrient levels. If you would like to - it may help to pop across to the Thyroid UK Forum here on HU - where there are lots of people who would help. Or if you prefer - post your thyroid results here with ranges if you have them to hand. I have Hashimotos and a B12 issues - thyroid and low nutrients do go hand in hand due to the lowered metabolism. It can be amazing how small tweaks can improve matters ...
It' the same here, even on my loading dose of 6 I was given 5 at first and then had to get another single, so £16 +. Very expensive for a single ampule.
We can write our own repeat prescription request though so I may try writing one for 5 and see what happens.
My GP also provided me with a prescription for 1 ampoule, however, I think this was a case, dare I say, of pig headedness as I made an apt to request 2 monthly injections but was told that "we have to be careful of using the injections to make people feel better because if we gave b12 injections to anyone it would be bound to perk them up." In actual fact I just wanted to regain the feeling in my toes, reduce the chronic restless leg syndrome and stop falling asleep as soon as I sat down but it all fell on deaf ears and I came out with the aforementioned 1 amp prescription and instructions to go ahead this once but it would be 3 monthly from then on.. However, luck was on my side as the pharmacist sent me back to the GP with a message querying the 1 ampoule which resulted in a prescription for 5 amps. Even better was to come when the pharmacist informed me that the expiry date was short and on 3 monthly injections I would have 2 left that would be outside of the expiry - obviously you can guess my thoughts - why waste them - self injections here I come!
Problem solved. A new prescription is to be issued for a pack of 5 instead of the single ampoule as was on the last repeat prescription. It transpires that the surgery is in the habit of issuing a repeat script for a single ampoule given to the nurse who is doing an injection in the surgery for their own internal records and this is not issued to the patient. Anyone self injecting gets a 12 month supply. An error was made, so they are saying, by the repeat prescription issuing GP who had not read her notes. A large note is to be put onto her records the make sure it doesn't happen again, so they say.
I think there are several points in this which are possible causes for concern but it for now the problem is solved. It doesn't mean we can't campaign for Hydroxocobalamin to be removed from the shackles of Prescription Only to give us the option of choosing for ourselves to administer additional doses because with have become symptomatic.
1ampule to both of us the same in small white box each Dr would not allow more than 1 ampules each at a time (we have ours every month ) I asked why not and reply I can not print as this sight would go ballistic so I’ll use the word
Attached instead I’m sure you all get the gist 🤭
We should not be surprised though as the struggles each and everyone of us in some shape or form has with the seemingly amazement that we really do need B12 to stay ALIVE
so we shall look forward again to our two white little boxes in a week’s time after I have to call the pharmacy again to explain we are expecting them to deliver and they are on Repeat and call to Dr’s to remind them to electronically send it as it’s vital to have repeat set automatically as it’s a life long prescription and again explain that no we are not coming to surgery and Dr has agreed self injections and yes I know we are the only 2 patients that have this in place but it is in place please check and PLEASE set it to automatic repeat ..... there I feel better now thank you all for ‘listening ‘🤗
Good luck everyone keep safe thinking of all of you
Presumably your ‘doctor’ is being very frugal with this important drug as he/she doesn’t want to prescribe a pack of 5 in case you drop off your perches thereby wasting up to 4 ampoules.
You could perhaps apply a bit of sabotage to this parsimonious idiocy but asking the pharmacy to supply the drug information sheet they should include with each issue. You, being a sensible and careful individual always dispose of the packaging of each drug issued as the information could be changed with the next issue.
I recently picked up a prescription for iron tablets which would normally come as a prescription for 84 tablets (ie. 3 months supply as a single prescription). To my surprise I got a single strip of 28 tablets for the £9 cost which was extortionate for something so cheap! I telephoned my GP to check and they said that because of the pandemic they are only issuing 1 month supply of drugs so that they don’t get shortages if the pandemic affects supplies from manufacturers meaning £27 to complete the 3 month course. They cancelled my b12 injections recently so this made me want to cry especially as the GP tried to pass off my deficiency as dietary (I’m not vegan or vegetarian and know I definitely have a healthy diet)
What is worrying is that they gave the GP a degree, so much for higher education.
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