I just wondered if anyone else experienced this. I used to get a B12 jab every 3 months but this was changed due to the fact that in the run up to my next jab I get neuro symptoms, twitching legs, muscle twitches, and the pins and needles in my hands and feet which are always present, get worse. So now I can have one every 8 weeks.
I've had hassle before from the GP receptionists querying the timing of my jab. But last week took the biscuit. First off she told me it wasnt due until October, even though my repeat prescription list, and notes show 2-3 months everywhere.
Then when I politely pointed this out she begrudgingly agreed to make an appointment for today. But on the proviso that she would email the nurse to check I could have it and if not my appointment would be cancelled.
I mentioned it to the nurse this morning and she was really annoyed on my behalf, she even remembered the email, which she promptly deleted lol. She was going to message the reception team and tell them to look at the notes, not just the recall date, as other patients had mentioned difficulties booking jabs.
Hopefully it should avoid future unplesantness but they make you feel like a liar and like you're asking for street drugs, not a B12 jab. Has anyone else experienced it?
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Sparklingsunshine
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Yep, I quite often have problems with the receptionists. They insist that everyone has to go onto a trial of tablets, as they are trying to cut down on B12 jabs. Every single time I have to point out that I have autoimmune P.A and that my jabs cant be stopped. And every single time they go away and check, to make sure that I am allowed. They also insist that having to wait an extra month because they have no nurse appointments will do me no harm. When I finally get an appointment, the nurse is not best pleased that I am so late, because, you know, if I don't get them on time I will get really ill!
The Doc has finally written on my notes that I am to have injections every three months and this is not to be reviewed, but I dare say I will still get the questions when I book next.
I swear that sitting behind a reception desk makes them think that they are qualified medics.
I'm just glad that I do my own jabs in between my NHS ones, or I'd be on my knees by the time I got to the surgery.
I'm grateful its never been suggested that I switch to tablets. My old GP more or less proved I had PA as when I was diagnosed I was prescribed high strength tablets in the first instance.
A few weeks later a blood test showed my levels hadnt moved one iota, it might have dropped. So although my IF was negative as it so often is, my GP took the view that I needed lifelong jabs.
I have heard both on here and the Thyroid forum that more and more GP's are trying to get patients on tablets. Which if you have PA is so stupid.
My levels increased on tablets but I still didn’t feel any better and only injections (which I didn’t particularly like the idea of) helped, so I’ve stuck with them. I’ve never worked out why 😵💫
I’m honestly glad that I opted out of surgery injections. I have P.A. ( positive Intrinsic Factor Antibodies test ) I could not get an injection any more often that 3 monthly with awful symptoms returning very soon after injection . Really pleased to self- inject . I buy the ampoules from German Online pharmacies . Needles etc from a U.K. medical supply company. Cost is about £2.00 for an injection, everything included .( so less than a cup of coffee in a café) Totally painless injection in the thigh . No running the gauntlet of receptionists . — Marvellous .
Yes a good solution for you to opt out of the NHS and surgery visits .I'm sure as you've said the best decision for you.
Far less hassle .
Empowering.
I'm the sort of person that if an injustice happening I have to put up a fight if at all possible.
To prove the need is there for more frequent B12 Injections for many many people.
Myself included .
I too buy my own and presently keep my 2 weekly NHS prescription.
I want to keep 2 sources of supply going if possible.
The majority of prescribed injections I do at home again hopefully setting a trend .
Many on here do self inject an NHS prescription.
The way to go in my opinion .
My mum would not opt out the NHS and would never self inject .
She is 95 in November
So needs an advocate .
Me
I put her case and keep her 8 weekly b12 injections .
B12 injection done by an HCA in her home .
Also documented dementia symptoms occurred before the 3 monthly interval .
G.p aware so changed to 8 weekly .
More awareness of the increasing need .
Again opposed by district nurses because of workload and low priority given to B12.
Short sighted and ignorant .
I've witnessed my mum ' wake up '
With b12 no dementia symptoms.
Wouldn't that lighten their workload !!!
Less dementia patients .
Let alone enhance the person's life .
This all fired at management level with district nursing and then was referred back to G.p .
One lead actually thought she'd talk me out of my mum needing this 'vitamin' boost.
Give me strength.
The more awareness the better for everyone's benefit and for those too vulnerable to fight their own case or to indeed self treat .
I'd like to know how many actually get a PA diagnosis and how many tests it took.
If private ones ( different interpretation of results it appears from posts )
Or NHS First test????
I guess very few
From posts this seems unpredictable,
With different results presented in different ways with different interpretations. NHS or private.
The very term Pernicious Anaemia now not being used on Nice Guidlines .
Also even with an 'official ' diagnosis treatment still lacking as in your case.
Or the NHS not willing to act on a test result from another private source . I do understand that however.
On the other hand without a PA diagnosis some are refused any treatment at all but with nothing else found to treat !and left with debilitating symptoms.
I do both.
I'm glad it's on my notes oral B12 did nothing for me .
On my notes
Only B12 injections have given me a gradual recovery.
No other drugs trialled helped.
On my notes
Receptionists
Nurses
G.ps
HCAs
Need experience of those needing more than 3 monthly b12 injections.
In their face ( as the expression goes) but literally I their face. Day in day out .
More training.
More attention to clinical skills
More attention to the NICE guidelines
More awareness so many need to self treat .
The more it's on medical records ,the more hope things will change fir the better.
I don't think all of my efforts however small are in vain.
I got B12 on the agenda of the 'group practice ' staff meeting .
Pharmacy more than aware their computer system has a big flaw in its set up .
Programmed for 3 monthly b12 prescriptions only.
I personally happier it's on my medical notes .
Going from posts IFAB results seem to interpreted in different ways and a positive test being disputed!
...and for individual patients brave/desperate enough to challenge the opinions of receptionists, nurses, chemists, careworkers, doctors and consultants - and push for proper treatment !
You are right - everyone learns and everyone benefits.
I understand you and totally get you opting out, I've considered SI myself, as it is having hypothyroid I'm used to really shoddy NHS treatment and self source T3 because I never felt well on Levothyroxine alone.
I do worry though that by people like us opting out of NHS care or buying our own meds, they are getting away with such second rate treatment and unless we make a stand, nothing will change or improve. Its almost like they are driving people down the self treatment route.
Not specifically but healthcare incompetence is everywhere. My husband and I take notes, save all medical tests and research everything. We advocate for each other. We have to remind and correct our GPs constantly. We should be the ones getting the doctor’s salary. It’s more frightening as we get older and have more issues to deal with.
They are paid according to the number of patients registered with them not for the service they provide. If the NHS paid them for each appointment/intervention, things might change but probably not. It's an utterly broken model.
Letting patients manage their health care with ChatGPT and making access to the cheaper tests e g. blood tests etc without having to see GPs would be a major step forward.
I had my injections changed from 3 monthly to 2 yet they still booked 3 monthly ! It was always a big deal when I explained I had them every 2 months. The receptionists where quite argumentative at times until I slapped them down and asked them to look at my notes.
Make sure it's outlined in your notes 2 Monthly, i did.
There will be a couple of underlying issues here, and it will all hinge on how the information is recorded in your notes.For the nurses to be able to accommodate your injections, you must have a valid patient specific direction (PSD) recorded in your notes. This will dictate the drug, dose, route and frequency and will have an expiry date on it. This is the legal document (a bit like a prescription) which dictates how frequently the nurse can inject. They can't give more often than this without a GP saying that's ok in writing.
There will also be a system to make sure they don't forget to call you for an injection. It sounds like your surgery uses recalls (they are set up with a specific frequency and will flag to an administrator that the process of care is due (whatever that may be, in this case a B12 injection). The recall will need the most accessible piece of information on the notes (it shows up on your "front page") and will be what the receptionists are trained to follow. So if the information in the recall was not updated (they can be changed, but not everyone knows how to do this) then I can understand why the receptionist would insist that your injection is not due yet.
I know it doesn't change the frustration and anger that you feel when you try to book your injection, but try to remember that the receptionist is human too, and that all health care professionals (and their administrative assistants) respond better when you are polite and calm.
Hopefully, someone with the power to change the recall frequency will have done so. Then the receptionists will have the correct information available to them in future.
I'm always calm and polite and that doesnt excuse the receptionist basically accusing me of lying. Its stated everywhere that my jabs can be given every 2-3 months. Its just laziness not to look. And respect is a two way street, patients deserve it as well as NHS staff.
A flawed system may well be the issue - but this needs addressing not continued adherence. Surely by now this could have been identified, discussed in-house and a solution found, alleviating stress from patient experience being the common goal.
Frustration and fear becomes anger - the post-Covid system means that GPs have become far more remote and receptionists the frontline staff bearing the brunt of that.
Long-term, the underlying problem is the trivialising of the perceived effects of B12 deficiency - which will only ever begin to change if TRUE range and severity of symptoms is widely acknowledged and understood.
Unfortunately even with that all in place it goes wrong far too often. I double checked details on front page .
Also the PSD was signed for the nurses .
I still had nurses disputing my prescription.
Refusing to give it.
Receptionists asking when due then questioning it every time .
Unfortunately it's taken as 'said ' ingrained 3 monthly b12 injections.
I've done all I can to make it easier and transparent on my notes .
Easier for me.
Easier for them.
The notes have to be read !
This practice seems to have gone .
Having a quick read before patient enters the room used to be standard practice.
A skill to scan front page .
A skill to listen.
I agree with what you have said .
Everyone is human.
But bad practice is at play too.
I'm calm ,patient.
It gets very boring though and at times stressful having to explain over and over again.
As it should not be necessary
I choose to book with the same 2 nurses and know now if a problem what receptionist is helpful avoiding those that have labelled me as
Oh it's 'her' awkward one. ( I overheard and ignored )
Patients are human too and often vulnerable . Staff in good health seem to forget this imbalance of power and forget their professional role of what they are there for.
To deliver care and treatment
My last B12 booked at the surgery was on the 10th Sept. With a now well Informed nurse who went over the notes to make it clear for everyone.
On entering a stranger.
Not sure why and no indication of her name so I asked .
Sent over from the hospital.
My heart sank .
Her first question .
How often are you having these.?
My notes say its not due .
Calmly but suprisingly my heart was thudding .
I told her my regime and that it shoujd be clear on my notes .
She replied
Okay .
I always ask what make of B12 they have today.
That threw her a little as had no idea just said B12 !
I saw the box.
All fine .
The bonus it didn't hurt .
Phew .
All smiles and left .
The slogan :
We will not tolerate thus that snd the other works both ways .
People generally are less aggressive, less loud if they are listened too when ill especially .
.... and this backs up my point, too, about not understanding the symptoms specific to B12 deficiency (the range and severity).
Some of the most devastating and life-altering symptoms of B12 deficiency include sudden inexplicable mood-swings, impatience, inability to find words, memory loss and confusion. Not to mention cognitive impairment and lack of concentration. At my worst, I had to take my partner with me even to book a few injection dates into my diary at reception.
I really admire your ability to remain calm.
This is not just "tiredness" and yes, it does matter that B12 injections are given when needed - some of us have had to stop working because these symptoms make continuing in previous employment becomes impossible.
Education: it is where compassion is found and is the answer to almost everything.
You have just encountered an example of 'The Dragon At The Gates of Doom'. These creatures are there to make sure we don't get what we need, or want. Much the same as 'Scrapyard Dogs' are there to stop the general public making a nuisance of themselves.
Your particular one may be an 'XL Bully' type or possibly another variation on huge slavering beasts. It sounds like yours needs a muzzle before it's let out in public.
If you were trying to get street drugs, you'd no doubt come across another of these beasts.
Good luck, and keep smiling. Laughing in the faces of these creatures is a great means of irritating them. Laughing at them lets them know they haven't won.
Yes it shouldn't be a battle. One is going to the surgery or speaking on the phone ( if that's possible now ) to get help.
Gp's at times give receptionists too much power by giving inappropriate tasks and leaving g them to deal with problems frontline that they cant deal with .
Wasting their work time . Making patients more ill.
I once had a receptionist asking all of her colleagues.
? 20 minutes later as wax half dizing on s chair by then to zone out of 'the circus '
Only then to be told aggressively to make a g.p appointment online
I was standing in front of them .?!!
It didn't warrant a G.p appointment .
I obeyed .
G.p 2 weeks later .
Read my notes .
Didn't understand why B12 refused .
Reinstated prescription.
Front page.
Went to order prescription.
Pharmacy computer kicked it off .
Not 3 monthly!!
Happened twice.
Saw named person on notes.
Wrote to her explaining.
Then rang and by chance got her.
I was calm.
She defensive as I'd put in letter on whis authority had she cancelled my prescription again .
There are some very good receptionists. Then there are the others.
Shakespeare described them in 'The Scottish Play'; a 'trio of ladies' discussing about meetings. 'Meetings' are more important than 'doings', after all. The NHS survives on meetings. If it's timetabled but there are no agenda items to discuss, the meeting generally goes ahead anyway. Let's hope that some reorganisation takes place to get control of this, but I'm not confident!
So sorry to hear that you have had this problem, I thought I was the only one! Last time I booked my appointment the receptionist told me that I wasn't due yet, and I had to tell her I have mine at 10 weeks (I wish it could be 8), not 12 as she was saying, I said it should be on my records as I asked the GP to do this as I was getting the same issue with the nurses!!
I hope you get it sorted, as having the Spanish Inquisition everytime you book your B12 appt isn't helping your mental health!
Oh yes, when I asked to have mine a day or two earlier as I was going away for a week or two, I was told NO you can make an appointment for when you get back.
They seriously need to introduce a system with penalty points for all those receptionists and others who cause so much trouble for people with PA. Add up enough and they get a pay cut or worse.
I have but find it a bit daunting, the whole sourcing stuff from the EU. I wouldnt know where to start and as I pointed out earlier the more of us who self source or self treat, the easier it is for the NHS to dismiss B12 deficiency sufferers. I'm certainly not averse to SI but would like to know how easy it is to get hold of the kit.
It concerns me that people are being driven to trying to get hold of essential meds that should be offered on the NHS. I see it a lot on the thyroid forum as well. I also worry about ongoing costs and how reliable and trustworthy the sources that people use to order are.
We've had scammers on the thyroid site tricking desperate people into parting with their money by offering fake goods or websites.
The big difference is that importing B12 from, say, Germany, you can use a verifiable and officially recognised pharmacy. Simply because the product is not prescription-only in Germany.
Whereas, for thyroid medicines, it is often only possible through questionable suppliers who are, at best, operating on the edge of legality. Now that nowhere outside the UK recognises UK prescriptions, we are rather stuck.
The nurse sets up my next appointment just as a nurse appointment. I recently annoyed the GP, on principle, by sending the link information, written on a card, about the CluB-12 conference. They all have to do regular professional development.
same as Oneash, the nurse always books my next appt at the end of the current one, so it’s worth seeing if yours can do that too.
I get jabs monthly now (at the nurse’s suggestion!) and my surgery is very flexible over timings if I’m going to be away or whatever, so it clearly doesn’t need to be made so difficult!
I am lucky that my GP surgery is really very helpful.
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