Different Guidelines on treating Pernicious Anaemia
We are aware that too many Primary Care Practices have told patients that due to the current COVID-19 pandemic, patients’ B12 injections have been stopped. We are also aware that there are between six and eight different Guidelines on treating Pernicious Anaemia during COVID-19 from various bodies and this is causing confusion amongst medical professionals. At the end of March we wrote to all four Ministers for Health about the issue, but only received a reply from the Public Health Division of the Welsh Government.
The BSH Guidance
The British Society for Haematology (BSH) published a Guidance on treating Pernicious Anaemia during COVID-19 early April which caused some confusion and we worked with the BSH and two of our experts to produce a new and better Guidance which was issued at the end of April. This Guidance has helped many of our members to have their injections reinstated.
Many surgeries are still or again giving the so essential B12-injections, but there are also too many who are not aware of this latest Guidance and are still not giving injections. If you have been told no injections are being given at the moment, do point your doctor to the latest BSH Guidance on B12 during Covid.
Letters
Last week, we wrote to the First Minister for Scotland & Wales along with the Ministers for Health and Deputy Ministers and asked them to use their good offices to distribute the latest Guideline on Treating Pernicious Anaemia during the Pandemic by the British Society for Haematology to all interested health professionals and institutions. We have also asked them to distribute our ‘Guideline for Doctors’ to interested parties. We will keep you updated on the replies that we receive.
Working Group
We are currently arranging a working group of different healthcare disciplines to produce one definitive Guideline. This may take up to five weeks to organise but in the meantime this society has produced its own Information Leaflet for Doctors for our members which can be accessed from the Members’ Homepage and our Resources Library. If your injections have been stopped, we suggest that you ask your GP or Nurse to reconsider their decision and ask him or her to read the leaflet and/or the BSH Guidance.
We are happy to take any telephone calls from medical professionals to further clarify this issue.
Our chair, Martyn Hooper MBE, has written an article reflecting on the treatment of Pernicious Anaemia, which you can read here on his blog.
I too was prescribed tablets but I simply do not absorb enough to make them effective. I contacted my doctor and asked for ampoules and syringes and needles and although he was at first reluctant I now give myself my injections intramuscularly into my thigh.
Simples!
Since march I didn’t get b12 injections; had fright on my hands. Doctor did not believe me, that i had symptoms of b12/PA. Made me very ill, had bad anxiety. They told me have to be tested. I was not happy about it, felt pressure in it. Told level okay, knew that myself, was not right. Doctor ring me, told if want injections it’s up me Of course I went; felt little better again, now they want to test me again. Though okay, will give me injections. Was told again that levels high; knew my level high because of have injections every 12 weeks. They stop it and told me buy tablets of amzon. My symptoms are back plus feel dizzy, brain fog, headache. Told me to wait six months. Hope not to ill, plus worry because kept falling over first time. Ended up in hospital with dislocated elbow. Feel that doctors use cov19 so stop injections. Makes feel scared what it’ll do to mental health and health. Hope you can read this, i am dyslectic.
I think it is disgraceful that some individuals have had their injections stopped for whatever reason. I know from personal experience if your frequency of injection is stopped for any length of time your symptoms an get worse, obviously. I, myself had a period of one year without my injection and I feel my health deteriorated when I wasn’t getting my B12. Thanks for keeping my updated. I appreciate the progress being made and want to support the Society in any way I can.
My doctors have cancelled my 6 week injections and I feel awful, depressed, in pain and desperately tired. I printed off the new guidelines to share with my doctor but to no avail. I feel the life I have regained in the last five years slipping away 🙁
If your GP is refusing to give you your injection, you should email the Practice Manager to make a formal complaint, refer to the latest guidance and request a clinical review, when I did this I got an injection within 24hrs
My GP suddenly started letting people have their injections. I wouldn’t have known this if I hadn’t phoned asking why the requested ampoule had not been sent to my chemist. I had an injection on Tuesday (June 2nd) after 4 months of sheer exhaustion and nerve tingling! I phoned my GP surgery, this morning, to ask about self injecting only to be confronted by a very passive aggressive receptionist. She tried to fob me off, but I dug my heels in, as I do not want to be in this position again. The other shocking thing she told me was that the B12 clinics have (yet again) been stopped because, as she put it, the surgery had made a mistake and too many people were coming for injections. WHAT!? Obviously, because some have waited weeks and weeks for it. She said they were following instructions from the CCG. I’m at a loss for words
Not only my injections have been stopped I am informed they will no longer carry out an annual check of my bloods. The CCG say they disregard the BSH guidelines and this is not because of Covid, they were intending to do this anyway. Surely the Association can do something to stop this total lack of care.
Would they refuse insulin? No! B12 injections are not taken seriously it is just as important as insulin.
I was prescribed tablets
I was struggling to even to get up and get clothes on . Had to take it in my own hands and youtubed how to self inject myself with a few failed attempts i finally managed it
My records had been changed to b12 deficiency not P/A and told I would get a blood test in 6 months
Interesting, same happened to me although blood test in 12 months. Seems to be a coordinated attack by CCGs on behalf of Government I think
Worryingly I am hearing of a lot of patients being told they no longer need injections and only oral B12 will be recommended going forward, even after covid 19.Also that GPs are using the covid break in injections to say they need to restest B12 levels and if in range that B12 is no longer needed and the patient never had PA!
My GP finally agreed to let me have a once prescription and I sourced my own needles to administer the injection myself. This will be reviewed for the next one and I am hoping to carry on doing it myself rather then take oral medications.
I am seeing more and more beauticians on social media advertising the injections for £35. This illness will never be taking seriously until this kind of practice is disallowed
In a written reply from my surgery, it is stated that Glos CCG are disregarding the latest BSH guidelines. I have also pointed out NICE guidelines saying that lifelong treatment by IM injection is required, all to no avail.
GP said it was not negotiable. The blanket decision was taken by Grampian Health Board. Wrote MSP but no further on. Pointed out recommendation but was ignored.
I have recently been diagnosed with anaemia and wasn’t aware that there is more than one type or that there is a society. I’m currently waiting on test results but I will be keeping in touch with everyone here.
I’d love to stand with anyone from the Grampian area and Fight this because I’m devastated on Monday il have missed two injections and I’m in agony and I’m exhausted I can’t remember anything short term… I rang today and was told they would test my blood tomorrow but not give me an injection… so then it has nothing to do with covid does it? This is all because they don’t believe it’s a serious illness..
I had a very frustrating and disappointing conversation with my GP, this morning. I asked about being taught to self inject, I got a categorical “No” Why? Because IM injections are not as easy to do as subcutaneous and B12 is only given IM. I pointed out that they can be given subcutaneous, but still no! Also, because B12 is a licensed medicine. I said that twice I’d requested the ampoule as I have a relative that is a nurse. The GP said that when I’d asked I was supposed to phone the surgery and confirm this and I hadn’t….I pointed out that twice I’d requested it “Well I’d be happy to prescribe the ampoule” Really!? First you’d have to get past your passive aggressive receptionist! In the end this GP suggested that I change to another practice as “I know some doctors are still giving injections” Doctors differ, patients die, as my wise old mother used to say
IM, in RSA, where I am from means intra-muscular and the thigh, is muscle?
I have just been without B 12 for over 6 months. They only supply the Cyanocobalamin in RSA, and due to already having a stomach cancer issue as well as now a thyroid issue, I’m very worried what this over 6 month lapse in treatment may have done.
I was told by doctors to ask pharmacies, and visa versa and ended up contacting the manufacturer, against the pharmacy laws in RSA, since it is a chronic script only item.
No one seems to care or understand what this medicine does, and the fact it’s called “vitamin” b 12 also throws people off.
I hope everyone is having some luck wherever you all are.
I’m 37 years of age and am proof of what this disease can cause and how bad it can make your life.
B12 deficient patients in Gloucestershire have been told that injections will no longer be available going forward. Covid 19 or not, they are stopping them to save funds! Patients are being told to take tablets. Personally have booked in at a cosmetic salon out of desperation.
I sourced 10 ampoules of b12 from arzneiprivat Germany.Drawing up needles with filter and 23g needles from Amazon.
Cost of ampoules with postage £22.fast service got ampoules within 5 days of ordering.
Both my wife and I have pernicious anaemia and have been refused treatment by our doctor.
Hello, I am in the process of making a complaint about my GP Surgery. I have PA and have tried the tablets, but I just feel dreadful. Head GP states that he will only take guidance from BMA, not any other organisation. Does anyone have any suggestions, please? I am getting rather desperate.
As far as I know the BMA does not have a guideline, but tell your GP to take this module: https://learning.bmj.com/learning/module-intro/.html?moduleId=10065215&searchTerm=%E2%80%9Cpernicious%E2%80%9D&page=1&locale=en_GB or read the article: https://www.bmj.com/content/369/bmj.m1319 and the comments.
Thank you Petra, these links are very useful. I also made a complaint to NHS about the surgery ignoring BMA guidance. Unfortunately, I got an automatic email back from NHS stating that during Covid epidemic, they are not processing any complaints. I will just have to carry on battling with GP. It is getting harder to do as I feel exhausted at the moment – however, I will not give up.
Sorry, I meant that the Surgery is ignoring guidance from BHS (see how fuggy my brain has got!)! Urrghh…
When I rang in March to book my April jab, staff said they’re not providing them during Covid. I left it a week, got another member, who said they’re ONLY providing jabs to pts. who are symptomatic. We shouldn’t have to FIGHT for them! I argued that having them helps deal with the symptoms – that’s the reason we’re on them for life! (can’t absorb from food). She checked with Supervisor and said I’d have to be screened – I passed all Covid questions. BUT, when I said it wasn’t due for 2 wks. she said I’d have to ring again then. So, it now works as follows:- I have to phone for appt; I have to wait for Nurse to ring me back and screen me [she logs 10 min. appt. for that]. Appt. arranged for soon after. They NO longer prescribe a 5 vial pack on prescription – they provide the B12 vial when we attend. Nurse then booked a 20 min. appt. to jab me! [instead of 10 mins – took 2 mins. tops]
Whilst writing, neither my former nor current surgery have ever allowed an annual blood test – there’s NO review. From a diagnosis 10 years ago, neither surgery would agree to 2 mthly injections (per the BNF/NICE Guidelines with peripheral neuropathy). Basically, they applied a 3 mthy. ‘one size fits all’ policy. I finally took the BHF extract in and the PA Lead GP agreed to a 6 mthly ‘trial’ of 2 mthly – which HAS helped – and that’s now been accepted by them ongoing.
BUT, when the guidelines were updated re: non – neuropathy pts. ( from 3 mthly – to 2-3 mthly) noticeably, NONE of the 3 different Nurses I saw over the next 6 mths. were aware of the updates!! (And said ONLY the GP would have latest version of BNF!) That’s a ‘bread and butter’ role for Nurses – THEY should ensure they keep themselves updated!
writing from the Ntherlands;
after recovering greatly with the injections, my gp thought i might as well change to tablets. A year later I was worse than ever. She would only give me 1 injection a month and I did not get better. Since then I resource my stuff from Belgium, an apothecary sends me what I need, and it doesn’t cost much either. Getting my info online I treated myself ,first 1 injection every other day for a few weeks, then 2 a week for months. I have been taking 1 a week now for about 3 years. My symptoms are still ,slowly slowly gettin less and less.
I would not have been struggling so if I had not been taken off the injections in the first place, that I am convinced of.
So , if it happens to you, ACT. Find a way to get your injections!
During covid lockdown I was also unable to have my Injections but after reading and submitting to my gp the BSH Guidance on B12 during Covid they were instantly reinstated. I am in the process of looking for a GP that can understand my situation as the care that I need is non existent.
I too have purchased from online b12 injections and will be self administering today. I have researched they types of b12 available and have opted for the Methycobalamin as this is supposed to be more effective for memory loss to which I am having difficulty with. My question is why is this type of b12 not available in the uk to pa patients!
I have had the same outcome as most of the above- go buy some tablets despite being diagnosed with PA , neuropathy and retinopathy, My injections were stopped in March 2020.
I am too old to tolerate arguing with GPS so I have ordered B12 ampoules and needles online and have watched the excellent you tube videos on how to inject properly. IMHO this is a cost cutting exercise by the surgeries, under the smokescreen of we have to follow orders from the CQComission etc. I have never in my life lost so much respect for the G.P. “profession”
B12 deficiency untreated for 6yrs, have pernicious anaemia also, been in a wheelchair since may, tingling and numbness now coming in my arms…doctor says this shouldn’t be happening because I’ve had the 6 ‘ top up’ B12 injections..I’m 30 years old and live in my bedroom and have no life, I’m losing the will to live, if this is life…I don’t want it
My 100 year old Dad has had PA for over 50 years. For most of those years he used to have monthly injections but then about 3 years ago they changed it to every 3 months. He was due a B12 in March and because of the Covid situation he was a month over due having the injection. He started having numerous falls (it was a miracle that he didn’t break anything). The out of hours doctor told me that he would have enough B12 in his system to last 12 months !!
Finally I spoke to a doctor at our local surgery and he wondered if I was up to administrating it myself. He explained what to do and suggested I look up on you tube which I did. It was really scary the first time but now I have been giving Dad his B12 this last 12 months. The Doctor also has allowed him to have the B12 every 10 weeks now too. He recognises that some patients needs varies to others. A good result!