Thank you for all of the help I recieved, it is very much appreciated, so thank you!
Spoke with GP practice manager this morning and she has said they have been instructed as off last Wednesday that B12 injections are to stop. This is under instruction from Public Health Wales.
Is there any clarification on this please? Is it true? I have my doubts and do not trust them.
Also, how long would it take, to get any effect from B12 injections? fourth one today and one week in and no difference so far. They will only give me loading doses every other day for two weeks, then one every 12 weeks. To me this doesn't seem enough, but what do I know, I'm just the one suffering, they are the ones who have ignored B12 deficiency with nuerological symptoms since July 2019. And now have a PPPD diagnosis, which could be due to B12 deficiency, but as always, GP practive not remotely interested and seem to only be doing this out of obligation, rather than need.
Thank you in advance for any answers. Hope you are all keeping safe and well
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Ceri-NorthWales
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Two weeks every other day then less regularly is the standard regime everywhere.
The rationale is that by that time, any B12 deficit should be restored to normal. But this is not true for everyone; some people who are able to pursuade their clinicians to extend the regime can find it takes several months to really repair B12 stocks. I managed to persuade my GP to extend my "therapeutic trial" for a further 2 weeks of every other day jabs, but she wouldn't do any more.
I'm afraid I know nothing about any recent change in prescribing.
Foggyme is the local expert on B12 and may be able to help more.
Hi Whisperrit 😆 Foggyme, is brill and it is because of her that I have the treatment that I do now. I am so grateful. Every 12 weeks seems far too long though, especially given the severity and the PPPD diagnosis,a dn the two weeks of loading injections seem insufficient, too.
And there is no way I can persuade them to be do more - it has already been a battle and a half! And they STILL don't get it.
Thank you and yes, Foggyme is an absolute superhero! We should all celebrate Foggyme, battling through her own health to us out. She really has helped me so, so much. I cannot thank her enough. Hero 💜❤
Don't be fooled by my mask. I am very low and deflated in regards to everything. Yes, I have a little more energy because I have been out of it after the B12 on Friday and pretty much all weekend.
I am not one who agrees with suing the NHS as I have always been of thhe opinion that, that money could've been put to better use, to correct the wrong in terms staff, training and/or facilities, but enough is enough. I have been treated atrociously. It is not on. I have gone through enough hell. Time for change. Time for the bad guys to finally pay - and that means everyone.
The battle with ESure, I am just handing over to MPs, same with the battle for healthcare, mental health and redundancy battling ex-employer. I am done. I have battled enough and enough is enough. I have worked a lot of the relevant documents - it's a lot to cover, but hopefully it gets my story out there and hopefully something will be done. If not, there is no hope.
I really am so grateful from the help and support from so many of you. You all know who you are - including you! ❤
So it does seem an NHS Wales thing - again! I cannot wait to see the end of devolution.
It is essential care and as Foggyme has rightly said, would they deny a type 1 diabetic insulin?
It is so wrong and in these times of a global pandemic, looking after our health should be a priority, but no, NHS Wales, says nothing else matter because we can't deal with it. I shake my head in absolute disbelief.
Ceri. I'm not able to sate here for long (body running on fumes at the moment) so going to have to be necessarily brief and copy and paste from previous replies..
As per copy and paste from previous reply.....here's what the PAS report in a response from the Public Health Division of the Welsh Government's position on B12 treatment...
[Quote from PAS Website...Welsh Government quotes in itslics]
Public Health Division of the Welsh Government
We have received a reply from the Public Health Division of the Welsh Government. The following is from the letter:
‘First let me re-assure you that stocks of vitamin B12 injections are not affected by the current situation with COVID-19’.
And the letter goes on to explain that, rather than patients having their injections simply stopped they will now be assessed to determine whether he or she has any of the symptoms of the Covid-19 virus:
‘If patients, such as yourself, have made an appointment with your GP or practice nurse, for your next injection there will need to be an assessment made on the day of the appointment to ensure that there are no symptoms suggestive of infection.’
The letter goes on to explain that the injection for patients who have the symptoms of the virus may have to wait until their symptoms have disappeared before they receive their next injection:
‘The current situation may mean that the interval may need to be extended – this will be based on clinical need with your GP’ ‘I hope this information reassures you that where appropriate vitamin B12 will be supplied’.
End of extract.
So the Public Health Davison of the Welsh Government have formally confirmed that prior to an injection being due, an assessment will be made and those who do not have symptoms of corona virus (which would obviously prevent attendance at a GP surgery) will continue to receive B12 injections.
Copy of information from PM...
See page 4, the yellow column on the document in the link below...BMA advised GP surgeries to teach patients to self-inject vitamin B12...and ensure that frequency is no longer 12 weeks apart. In your case, you should have ALL the loading doses and then continue every other day injections...because of the neurological symptoms (as per all guidelines - which this new instruction fails to account for).
The key here is getting instruction to self inject...then focus on getting every other day B12 ampoules on prescription so that you can self inject at home (as per these guidelines.
So...the position 'out there' is confusing - and very few are delivering services as advised by the BMA and the Royal College of General Practitioners. Some health trusts and CCG's are issuing their own instructions, as are some GP surgeries (I.e. many are making it up as the go along - and the making up is not often based on any k owl edge of B12 deficiency, and it's treatment. Here's what appears to be happening across the country...
1) Many GP's are simply stopping B12 injections (wrong on all counts - see previous re0lies for further detailed information)
2) GP's that understand B12 deficiency are either continuing injections at the surgery or teaching their patients to self inject B12 - and giving them the syringes, needles and prescription to do this at home (this following the guidelines discussed above).
3) Loading doses should still be given and every other day injections continued until not further improvement - this applies to you.
Oral supplements are not suitable for those with absorption problems and/or neurological.
So...as PMRpro says, left hand...right hand...or at least...it is for those GP's who are ill-informed about B12 deficiency. Those who are well informed are continuing treatment (surgery jabs or self injection at home) - irrespective of any advice that may be issued to stop injections (again, by a variety of sources who don't understand the implications of what they’re advising!).
As to recovery...see details in previous replies...in short...recovery from B12 deficiency doesn't happen immediately. It can take many months (especially where there has been a long term deficiency (as in your case) - neurotically repair takes the longest. This is why it's vital that B12 injection continue at the correct regime.
Putting you on two or three monthly injections after loading doses is missing a step in your treatment - the intensive regime for those with neurological symptoms. Suggest you download the BNF prescribing guidelines (left in a previous reply) and show them to your GP oral practice manage (or take a screen shot and show them that). Missing this step will mean that your body is not getting enough B12 for effective neurological repair (which is precisely why the BNF prescribing guidelines state 'every other day until no further improvement'. It's frustrating Ceri but very few GP's realise a) that this treatment regime exists or b) how essential it is for full neurological recovery. And shockingly...even when this prescribing is turf toon is pointed out to them...many still refuse to follow it!!
Worth noting that the World Health Organisation classify vitamin B12 injections as essential medication - in the same way as insulin - it's essential to life. (Would a doctor stop insulin or insist on giving it in a form body cannot utilise (oral). I think not!!
To be honest, makes no odds whether the surgery does it out of obligation or need...so long as you continue to get those B12 injections- and continue with the every other day regime after loading doses - perhaps for many months / years whilst you are still improving.
Ceri - I've left many replies about B12 and also replied via PM - it's been a lot for you (for anyone) to take in but if you go back and read those replies again...and read the links left in those replies - they will give you the information you need.
As per one of my previous suggestion...if the surgery are still refusing your B12 injections, use the information from the Welsh Statement and the 'official' advice to teach SI or give the injections at the surgery...and put a written formal request to,your surgery for the continuation of treatment...as per outlined in other replies...you could use the ready written comments I provided to present your augments for treatment. Formal requests in writing work best because that goes in medical records (include the BSH, BNF, and NEQAS Treatment Alert, cautions ageing oral supplements, and I prawn e on long-term treatment for neuro symptoms - as per previous links).
They have to read ALL you include with a formal letter and I feel sure that one of the main issues is that your GP's just don't understand B12 deficiency - and haven't read the information you handed to them before. So do it formally in a letter - they can't ignore that and may learn enough to realise that you should, I fact, be receiving intensive treatment with injections.
Good luck x
P.s. not able to re-read this so excuse any typos , silly autocorrects...or poor expression (I am a foggyme today 🤷♀️)
As always, thank you Foggyme. Please do take time to rest up and take care of yourself though. I didn't want to message you as a just incase and I feel I rely on you too much! haha
GP practice manager will not listen and as soon as I reference WHO or anything or the letter from Public Helth Wales that will take time to filer down to GP surgeries, I am shot down. They simply will not listen.
3) Loading doses should still be given and every other day injections continued until not further improvement - this applies to you
They will not do this either. It is loading doses, evrey other day for 2 weeks, followed by one injection every 12 weeks only. They will not budge at all and whenever I try to explain or show the correct info from WHO, BNF, NICE etc, I once again shot down and told "No, I don't want to hear it!" This is from the practice manager, even in normal conversation like this morning. Head, brickwall is an understatement. They are right. Everyone else, even WHO, are wrong.
They also refuse to even think about or entertain teaching people to self administer. They are only interested in respiratory patients and that is all. I have no idea if I even am considered a respiratory patient, since I have been struggling with breathlessness for 13months since battling pneumonia. In Oct 2019, Glan Clwyd rheumatologist put in a referral for respiratory medicine. Heard nothing since and rheumatologist refused to put me forward for lung function tests. GP put me forward for basic respiratory tests (big word, begins with an 'S'), but only after me pushing and pushing for answers. This was 3-4 weeks before the pandemic took hold and they are no longer carrying out these tests. Breathlessness has been getting worse and worse over the last few weeks, but nope, GP practice doesn't care.
I've given up. I'm working on collecting all info together on everything I need help with, in easy to understand documents, to send through to as many relevant MPs, organisations and healthbaords as possible. I need help with all this and the failures that are going on, need to be esculated and high. Once I have it all together and sent it, everything is in their hands.
Suggest...one letter the same for all...with all the evidence attached...and at the bottom put in a list of everyone who has been cc'd (may frighten your GP into action). Especially if they take the fluffin' time to read the guidelines and evidence.
Good luck...so sorry this is happening to you...will be thinking about you xx
Thank you ❤ it is doing all that, that is taking the time. Thankfully, I rested up a lot over the weekend - without choice, body just wouldn't do anything after Friday's B12. Just this afternoon, I have had an MP contact me from a reply to a post he put up in regards to Welsh Government and the letter being sent out. He is passing my details on to the relevant MP, so fingers' crossed
Hi ceri, my daughter has hers every 12 weeks so presume that’s the norm for everbody. She started off on 3 times a week for 2 weeks and then one every 3 months. They do take about 3 months to kick in Hope this helps Take care
There are two treatment regimes for those with B12 deficiency (whatever the cause).
As per the British National Formulary (GP's prescribing guidelines)...
The first is loading doses followed by two or three monthly injections. That is for those who do not have neurological symptoms.
The second is loading doses followed by injections every other day until symptoms stop improving (this can be for very many months, if not years). Most GP's have never heard of this simply because they don't read down as far as that paragraph in the BNF.
If your daughters injections took three months to 'kick-in', then it sound like she should have been on the more intensive regime...she would likely have improved more quickly.
There are also issues with the NHS 'one-size-fits-all' B12 treatment regimes. Very few people can manage on three monthly injections and for many, two monthly injections are not enough either. There is a wide variation of frequency in terms of what each individual needs to keep well (I had injections every other day for two years and now need an injection every week to keep symptoms from returning. Some people have to have an injection every day to keep well.
Nobody really knows why individuals vary so much in their requirements for B12. Very recent research identified a biomarker that was present in those who did need very frequent injections. This was absent in the control group (who did not have B12 deficiency) and in the group who managed on three monthly injections). Further research is now in progress and it’s hoped that more detailed investigation of the role of these specific biomarkers will enable scientific explanation for why some need more B12 than others. This would mean that folks would no longer have to go through the tortuous process of 'proving' to their GP's that one injection every three months does not get and keep them well. And that can't come soon enough for more people than most GP's could imagine!
I'm mentioning this because many people find that the frequency they need to remain well shifts and changes over time too (it is not really known why yet, it as above, research is in progress). So...if your daughter finds that her symptoms return before the next injection and then abate once she's had that injection...then she needs more frequent injections. Worth keeping in mind since B12 requirements can and do change over time.
It's not unusual for people to have to limp along for several weeks before the next injection, thus 'missing' out on vast chunks of potentially good health - all for want of a very cheap injection (about £1 per time) which is harmless and non-toxic. Shocking.
Worth considering that B12 injections are freely available over the counter in many European (and other) countries and folks with B12 deficiency can purchase injections as often as they need them to keep fit and well (many of those pharmacies will often do the injections as well).
Animals with B12 deficiency have a treatment regime that consists of B12 injections every week!
I was once in the same position as Ceri and, as a result (and as you can probably guess)...I'm quite passionate that those with B12 deficiency are treated appropriately so that they can be as well as possible (B12 deficiency is a nasty sneaky debilitating condition 😬).
Hope your daughter keeps well and manages perfectly with three monthly injections (as some do). xx
Well thanks for your reply. Given me a bit more insight to my daughters condition( pernicious anaemia). She is doing well all things considered, she is also caring for my granddaughter who has lupus. X
This appears to be happening all over. There was a story in our local paper that a patient with pernicious anaemia was not to get her B12 injection. This is NHS Scotland.
Have you contacted the pernicious society based in Bridge end South Wales.MARTIN Hooper the president will speak to the practice re. The current guidelines.
Hi the society is for anyone with B12 deficiency. The phone number is 01656 769717. Look them up on the internet there is good info there for professionals as well as suffers. There are also support groups now with one in Bridgeend. I don't know about north wales but there will be info on their website. I have neuro problems and followed the alt day regime. At the time I could not drive so I said I would do it myself. The GP was OK about it but the nurses weren't. None of them knew about the new guidelines. My dr from the lupus centre, London wrote a letter requesting them to follow the upto date guidance. (2014!).Hope this helps
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