Five months ago my neurologist recommended alternate days of B12 injections long term. I am happy to self inject using subcut method. My GP nurse says my technique is excellant. To date I have been provided with the B12 vials, offered the needles but not syringes to self inject. My doctor is unable to prescribe the syringes as they are not listed on community pharmacy!! I have now complained to my local CCG and NHS England. Apparantly it is NHS England who decides what is listed on community pharmacy & they have delisted them. If I was a drug addiict I could of course get the needles and syringes I need. However they wont let me have them because I need them for B12 injections. Madness!!
Currently am awaiting a case officer from NHSEngland to contact me so that my complaint can be investigated. NHS England are unable to give me a specified period of time of how long this wil take or how long it will take to investigate. The woman at NHS England taking my compaint was so shocked by my complaint that she had to check with colleagies to see if I was right in what I was saying. I am.
Ive also complained to my practise manager saying cant they arrange something with the hospital who do have syringes!! She is investigating. Youd think I was asking for some high tech expensive bit of medical equipment......not syringes that cost pennies.
For the moment have bought my own needles and syringes.....as am not prepared to jeopodise my health for nonsense beurocracy.
I can't believe this nonsense. Advice anyone? Shouldnt we as a group be challenging this?
Written by
waveylines
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You can count your lucky stars that you have been prescribed B12 ampoules so regularly . Most of us on this forum will envy your treatment . Many of us with P.A. have difficulty getting even one injection every 3 months .Most GPs would not consider self injections . My doctor was appalled when I told him that I S.I. Also a GP isn’t obliged to follow a specialists recommendations ! So honestly waveylines , I would be pleased to buy syringes myself , as they cost “only pennies “ as you say .
Self injecting is so convenient , saving trips to the surgery . We have to buy our B12 ampoules from German online pharmacies , who sometimes run out . You have been really fortunate in having such a good GP. Count your blessings !
I will be interested to hear how your complaint is dealt with.
Wow - well thanks Wedgewood I feel thoroughly told off! I am not 'lucky' as you put it to have this treatment. At the point of starting B12 injections I could barely walk, had serious legs, arms, neck, head, lip & trunk tremors, numb feet, shooting electrical feelings over my whole body, blurred vision, was totally incontinent for a year both bowel & urine, extremely fatigued, very weak & my memory was shot! So if that makes me lucky that the NHS then gave me this life saving treatment & I should be grateful Ive been given it every other day....then words fail me!
The guidelines clearly state every other day for neurological symptoms. Thats what I have. Its also cheap as chips for the nhs to give but by now I would be costing them a fortune without the b12 injections!
Please dont put me down for getting the correct treatment!! I dont deserve it.
I agree with Wedgewood. Although I fully understand your frustration, it really is excellent that you have been provided with B12. I know many people on this forum source syringes online and will be able to advise on very cost effective places.
Its not really Catman......its was what I needed or I would be wheelchair bound by now. I already have sourced my own treatment including equipment but thankyou for saying others can suggest sources.
We need to fight back.... rather than viewing someone as lucky if they manage to procure the correct treatment. We ALL deserve to be optimally treated.
Good for you Nackapan.......why should we self fund it indeed! However its a bit of a process so make sure you do your own injections as it might be a long wait! .....lol.
I dont have a set brand but the ones I currently are being given are Accord Hydroxocobalamin 1mg in 1ml. Solution for injection. They come in a box of 5 ampoules. Hope that helps.
. Another has the sane prescribed on the forum but for IM.
It's made by rotexmedica. The very same as should be on it's way to me. Wirh sc on the box! At present I get,,,lanoch (Austtian ) given to me at the surgery.
The pharmacist asked !
They might be forced to give a prescription now as the surgery shut for 'deep cleaning '
Yes the B12 vials are all for IM as currently there isnt a recognised treatment for sub cut. It really amazes me as diabectics did subcut fir years before their pens came along to get the insulin into their system so to me it makes sense that this is a viable route for B12 too.......its just that its never actually been researched!! So all the reports of success like mine are anecdotal. Maybe someone will research it in the end.....
Yes I bought the same ones when I supplied my own....they are fine. Infact I found them easier to snap. I uses a cheap cotton make up remover pad to cover the top of the vial when snapping the tops to avoid cutting my fingers.
That sounds right re needles and syringes. Make sure the 2ml syringe is compatible with the needles you are ordering......medisave normally show what work with what. Each syringe has its matching type of needles. Eg the needles I have on the nhs dont fit my bought syringes.
NHS prescribes yellow & green needles.
Sharps bin?
Not heard of a device for snapping the vial. Its easy to do by hand just used the pad to protect your fingers.
You will be fine...... I was VERY nervous about doing it. I ended up looking up subcut injections on U tube and asked a friend round the first time to supervise me!! Of course no doctor or nurse would show me at that tine as it wasnt being prescribed. However the nurse you are seeing might as you are being prescribed the injections?
You dont need the sterile wipes. I bought some the first time around but later on when I saw the nurse she told me no need.
Thank you. Didnt realise the needles wouldnt fit all syringes. Good point.
I have 2 weekly at the surgery IM.
I'm fighting to get Sc on prescription as they wont budge at present for any more injections to try.
My Gp agreed for sc to be given to me at the surgery but not at home. instead of an IM to try. It wasnt possible as nurses wernt covered to do it as not licensed for Sc
My gp thjnks tablets will get me longer between injections. I've tried as directed . No good!!!
My husband said I can practice on him! . He has 4 a day as type 1 diabetic. He has a pen now but to get used the body sites used. My arms are so sore they need a break.
He is so angry that we are discriminated against getting our treatment.
So what do you do if the needles dont match your syringes?
Another good point sharpes box.
The gadget apparently is on Ebay ampule snapper.
Sounds as though if careful not essential but perhaps worth a try.
I am nervous but I'm also got t8 try as I'm just not able to function . No tv no reading cant travel. Csnt balance some days.
So after 16months must try a different frequency to see if it will help.
Awww Nackapan......you will be fine & ure hubby will know all about subcut as a diabetic so great support. My nhs needles & syringes match up, I just can't use any of the ones I bought privately with any from the NHS -they have to be used seperately.. Its worth checking but medisave should show you whats compatible.
Am surprised at your GP because patients are usually encourage to do subcut themselves.....its very safe once you know what to do. The gp nurse checked my technique about 9 months after Id started!!!! 🙄 You will find sc lot less painful than IM. They dont hurt.
I started with alternate days because had neurological symptoms but ended up on daily.......still am. Thing to remember is that there is no known case of over dosing on b12.... I also take Thornes Basic b complex because am injecting so frequently. Its only b6 that you dont expel any excess off so be careful of that. There are dffering opinions on supplementing, some will say you don't need to do this. I find I feel better if I do take the supplement. We are all different. Ive reduced my thyroid meds as my uptake of thyroid hormones is so much better since being on b12 jabs.
Youre welcome to pm me if you want. Let me know how you get on.
Thank you . I do use supplements as on injections my ferritin dropped. Gp not concerned but I shook alot. That stopped on iron. But can absorb folate from food. As when I took 200mcg a day folic acid in a supplement I went above range??
I have blood tests to show what I need. Gp good about that.
Have taken vitamin d for a few years before ill.
Shame I didnt take a 55+ womens multivit I now have as b12 in a higher dose in it!
I truly believed a my diet was good I absorbed it.
I blame the menopause masking b12 deficiency signs. Hindsight hey.
Unbelievable!! Does your GP think you might become addicted?!! Besides which loosing balance, shaking (tremors) are all signs of neurological damage so your GP shuood be allowing alternate day injections. Honestly you will feel much more in control when you get your own & can properly test out the best frequency for you.
Go did 'allow ' every other day for some time when challenged at the start when I was supposed to wait 3 months. at my own pace. I moved to weekly then 2 weekly as no further improvements were happening. Infact at that time he injections were causing more headaches on tio of the migraines I had.
What I didnt realise was once I'd made a bigger gap i wasnr allowed back to more .
So as I've done a little more and out if bed all day I think the need has changed.
One nurse said she thought I was lucky getting the In jections . She paid for hers at a beauty saion.
Yes I know! Ive even had it said to me on here......lol.....
I know your headaches increased but you can get worse before better. I had big phases where I thought Id gone toxic on the b12 as symptoms worsened so would back off but then after a few days ended up increasing again. In my case it turned out I needed to reduce my thyroid meds as the b12 was making them more effective, rather than reduce the b12 jabs. Things settled after that. So much is trial and error. And many medics think its all 'simple' -linear- do one thing you get X result......but then many dont even consider the interplay of other factors. Stay strong......you can win through. Keep records of all you do, symptoms, blood tests etc.....it helps to look back on to spot patterns.....
Can I ask why you have subcutaneous instead of IM? I give myself IM into thigh which tho it stings a bit is easily done (b12 support page have diagrams or you can look on you tube for demonstration) and I have had no problems in two years giving these too myself alternate to what I get from surgery. I now have had them withdrawn so will be guilty reliant on self injecting. I use ROTOXEMEDICA which I get from Germany.
Infact thats how they were given at the start . Aso I coukdnt face IM so nurses still do those but less frequently now . If it works out I will do sc only.
I have the same as you from Germany and Accord I ve just collected on prescription.
Your GP can prescribe sharps bins for you......if not you can buy one then drop it off at a chemist that does needle exchange & ask for a replacement one. Thats what I did until GP put them on my repeat script.
Thanks sleepybunny. Good idea. I havent yet.....but I will. I havent yet to give the surgery & CCG more time to sort this as they now finally appear to be looking at this.
Hang on though HeartGilly, yes, the NHS is short of funds, but would anyone question the thousands of pounds per DAY spent on premature babies, or cancer patients, spinal injuries, etc, etc.
Are diabetics deprived of insulin ?
Pernicious Anaemia is also a fatal illness, so why would we be any less deserving of the correct treatment ?
PS. Yes, syringes cost pennies individually, but you have to be able to afford the initial outlay.
Everyone on here obviously has sufficient funds to access the internet and benefit from the excellent support of this forum, also to order supplies on line.
However, I feel, and fear for those who cannot afford these advantages in life, which is why I believe these 'small' battles need to be fought
You are on this forum, so do you have Pernicious Anaemia ?
If you do then you should understand it IS FATAL without treatment.
You obviously misunderstand my point that EVERYONE is entitled to treatment for their illness.
The NHS does not ask cancer patients or parents of premature babies to pay up front for their treatment, so why should we ?
I state again that not everyone with PA has the means to purchase syringes, Hydroxocobalamin from Germany , or indeed access the internet - as you and I obviously do.
If you have PA, I don't know how badly you are affected by it, perhaps it was picked up early by blood test.
Unfortunately I was not diagnosed until I could hardly breathe, spent most of the day in bed, broke ribs three times because I had lost balance, had no feeling in my legs from the knee down and in my hands from fingertips to elbow, incontinence of faeces, depression , cognitive problems and many of the other symptoms of PA to numerous to mention.
I had to give up my job as a professional in the NHS at the age of only 50.
So please do not say that I , and everyone else with PA are less deserving than any other patients of the appropriate care and treatment.
Ps: I've just looked at your previous posting and am very surprised to learn that not only do you have PA but that you are an Advanced Nurse Practitioner ... Yet you didn't know that PA can be fatal ??
Well HeartyGilly I think that is whats called the thin edge of the wedge.....its amazing how quickly other items are added to the list, escalating in price & then it means that those that cant afford dont get & therefore have inferior or mo treatment. Also please remember you pay taxes & pay into the nhs already. Are we going to say that beta blockers or thyroid meds or insulin needles are not expensive so we should buy are own?
I think part of the problem is that B12 deficiency/PA are not taken seriously as a condition with serious consequences if not optimally treated. Lets not join in with the attitude of certain parts of the NHS.
I think the needles are on there for insulin systems. The b12 ampoules are on there as the nurses to use to inject. Presumably they get their needles & syringes elsewhere......really dont know!!
This isnt the only issue....my local CCG told me they had the same problem with enemas -the laxative was listed but not the equipment.
I went to a Pharmacy who was not licensed to provide needles and syringes (and also wanted a very high price for his B12) but he looked up who was and printed off a sheet for me. I headed down to a licensed "Needle Exchange" pharmacy and bought them at $1.60 NZ per needle and syringe, (and the much cheaper B12). I just want to boost my levels a bit more than the Doctor wanted to give me - and to avoid having to paying her nurse's fee of $35 a shot! - so I don't mind the cost. I guess it you are having it every second day longterm it will add up. Hopefully they will sort it out for you.
I purchase all of my b12 and syringes online from a reputable site and have been for a few years now. I gave up trying to get locally in the UK. I get my supplies from vitaminb12online.com
I am lucky that I have daily injections and my GP is very supportive with this. He can’t give me syringes on prescription, but I order them from the practice pharmacist. They are supplied in packs of about 20. My GP recommends I sterilise the syringe in a microwave, which is similar to sterilising babies bottles. I boil them for 2 minutes and use each syringe for three weeks using this method.
In addition to PA I have other problems which still haven’t been resolved and are getting worse. GP considers everything to be PA related which it isn’t as I am fully treated.
You shouldn't be reusing plastic syringes. The microwave is not an autoclave. They were never designed to be resterilised once out of the sterile packet or used repeatedly for that matter.
If you need extra syringes; you can obtain them cheaply enough from exchange supplies. If you really cannot afford even that; then take the used ones to the local needle exchange in your area where they will usually replace them free of charge. Just don't mention they are for legitimate uses like injecting b12 otherwise they might refuse on the grounds they are only funded for illegal drug users.
Thanks for the replies. Currently I purchase my own needles & syringes. However as I inject every other day which is agreed by my GP & prescribed by my NHS Consultant, I dont feel its right I have to do this. This is not coming from NHS England but is down to local CCGs who have taken syringes off their community listing. There is no rationale reason for this embargo.....so as a matter of principle I think its worth fighting for. I see no reason why I should have to provide the equipment for an agreed NHS treatment.
Interestingly when I contacted NHS England I was told they get this query frequently.....but the directive does not come from them! I suggest if anyone else has this isssue they challenge their GP Surgery& their local CCG. I know its a bother & can understand why people buy their own but the more people that protest the more likely they will alter their practise. As a group we have far more power.
I will update when I have the outcome.....but as this has been going on for nearly 5 months I doubt it will be soon!! Lol....
Well done on getting the treatment you need on the nhs. I too have neurological symptoms and have been battling to get more frequent injections than every 6 months! They won’t budge. So I’m buying in the B12 and the needles, syringes etc. Personally I’d be happy to buy my own syringes.
Well thats your choice Bluebears. I did the same & bought my own but then launched a campaign with my practise to get what I should have. My surgery sourced the needles and syringes and supply me with them. I self inject. The nurses at the practise told me they'd felt upset when Id been refused the supply of needles & syringes & thought it was right they supplied the needles and syringes.
The system will not change unless you challenge it!!! Diabectics dont have to supply their own needles and syringes so why should we!!!!
Managed to do it okay but do get nervous. Much less painful than IM
Now trying every 10 days as only have to go 3 weekly to the surgery. Will try . Can have surgery ones 2 weekly. Dont want t8 lose them as still waiting for an answer from CCG. My Gp contacted them.
Awww sorry to hear you felt poorly. Pleased to hear Neurologist agreed with sc. Great hews. And a good idea t hang onto the surgery ones.
The frequency of injections is a tricky one & very individual. I must admit I got confused & would think the b12 was making me poorly.....but always turns out it wasnt! The best I can say is be guided by what feels right for you. We are all different. However be aware that if you have neurological symptoms you need an injection every other day until no further improvement......thats the guidelines. I found the b12d.orgs symptoms checked really good to repeat as it shows up the different systems in the body rather than just a list of symptoms & keeps a history so you can see if & which system you have improved.
Sympathy Nackapan. I made a mistake I moved GP Practise.....and hey presto received a letter from saId new Practise stating they won't prescribe my b12 vials as outside prescribing guidelines and there is clinical insufficient evidence fir me to have them. I would need to be referred to the 'correct' specialist.GP also stopped my thyroid meds too!!
I sent the letter through to my nhs neurologists secretary who was deeply shocked by it. Was getting the Proff onto it. I think b12 is now back on list (but no letter to say so) but still saying no to my thyroid meds. Meeting this week with GP. Am in shock!
Honestly even if nhs consultants prescribe the GP can refuse even if you've been on them for years and have clinical evidence on your file. I despair. GPs have too much power. This new GP has never even met me!
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