If your treatment is being restricted or stopped altogether, hopefully there will be some help options for you here.
The Letters….
There are letters being sent out to patients, some of whom have received B12 treatment for donkey’s years, which announce that they will no longer receive their vital injections.
The incidence of this behaviour is increasing …..This appears to be due to a cost saving exercise and largely happens without any prior consultation with individual patients to discuss their needs. (The cost of B12 is pennies but the time for nurses to give the injection appears to be the ‘saving’ here.)
Some practices are enclosing diet sheets for patients to learn how to make sure they are eating foods containing B12. Quite bizarre when these patients wouldn’t be deficient in the first place if they could absorb B12 from food.
The same old line about ‘too much B12 being harmful’ (which is complete rubbish) is often used in these letters and if the patient is unaware of the truth about B12 they might quietly comply with the harmful removal of their vital treatment.
Some letters state that the reason B12 injections are being stopped is “many patients are being over treated with this vitamin”. If this is the case in your letter, please ask them to provide you with this evidence.
Our clinicians need reminding that Pernicious anaemia (PA) is the very tip of a huge iceberg.
Some GP’s may incorrectly believe that only patients with a definite diagnosis of PA, those with a positive intrinsic factor antibody test, require treatment for life so seem to be using this as their treatment exclusion criteria.
The trouble is that the IFA test is not entirely reliable, it has a very low sensitivity and misses many that do have PA.
Obviously this ignores all those who require life long treatment due to other causes of B12 deficiency (of which there are many), thereby potentially causing great harm to the vast majority of their B12 deficient patients.
Cost saving?
These letters appear to be indiscriminate cost saving initiatives and are being sent out as individual practice directives and not that of the CCG (Clinical Commissioning Group).
You may know that each GP Practice is governed by a CCG and each CCG has a Medicines Optimisation Department – the role of this department is to “make sure that the right patients get the right choice of medicine at the right time”.
If you have received a letter stopping your vital lifelong treatment then why not find your CCG and talk to the Medicines Optimisation department about what is happening?
There are 211 CCG’s, find yours here.
You may find the NHS Constitution of great help when discussing your lack of treatment.
This valuable document is for everyone and should be used in situations when your GP or your surgery is not making any sense regarding your treatment. I have added some parts of the text below but want to highlight the following sentence for you to bear in mind;
“The Secretary of State for Health, all NHS bodies, private and voluntary sector providers supplying NHS services, and local authorities in the exercise of their public health functions are required by law to take account of this Constitution in their decisions and actions.”
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The NHS Constitution sets out your rights as a patient, and explains the commitments the NHS has made to providing you with a high quality service. Organisations providing NHS care must take account of the NHS Constitution when treating you, so you may find it helpful to refer to it if you are thinking about making a complaint.
This Constitution establishes the principles and values of the NHS in England. It sets out rights to which patients, public and staff are entitled, and pledges which the NHS is committed to achieve, together with responsibilities, which the public, patients and staff owe to one another to ensure that the NHS operates fairly and effectively. The Secretary of State for Health, all NHS bodies, private and voluntary sector providers supplying NHS services, and local authorities in the exercise of their public health functions are required by law to take account of this Constitution in their decisions and actions. References in this document to the NHS and NHS services include local authority public health services, but references to NHS bodies do not include local authorities. Where there are differences of detail these are explained in the Handbook to the Constitution.
1. The NHS provides a comprehensive service, available to all irrespective of gender, race, disability, age, sexual orientation, religion, belief, gender reassignment, pregnancy and maternity or marital or civil partnership status. The service is designed to improve, prevent, diagnose and treat both physical and mental health problems with equal regard. It has a duty to each and every individual that it serves and must respect their human rights.
At the same time, it has a wider social duty to promote equality through the services it provides and to pay particular attention to groups or sections of society where improvements in health and life expectancy are not keeping pace with the rest of the population.
4. The patient will be at the heart of everything the NHS does. It should support individuals to promote and manage their own health. NHS services must reflect, and should be coordinated around and tailored to, the needs and preferences of patients, their families and their carers. As part of this, the NHS will ensure that in line with the Armed Forces Covenant, those in the armed forces, reservists, their families and veterans are not disadvantaged
Improving lives. We strive to improve health and wellbeing and people’s experiences of the NHS. We cherish excellence and professionalism wherever we find it – in the everyday things that make people’s lives better as much as in clinical practice, service improvements and innovation. We recognise that all have a part to play in making ourselves, patients and our communities healthier.
Everyone counts. We maximise our resources for the benefit of the whole community, and make sure nobody is excluded, discriminated against or left behind. We accept that some people need more help, that difficult decisions have to be taken – and that when we waste resources we waste opportunities for others.
You have the right to receive care and treatment that is appropriate to you, meets your needs and reflects your preferences.
- Quality of care and environment:
You have the right to be treated with a professional standard of care, by appropriately qualified and experienced staff, in a properly approved or registered organisation that meets required levels of safety and quality.
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Patients with B12 deficiency are regularly discriminated against.
You can see that this powerful and useful document can be employed to protect both you and your treatment.
If your particular GP is unhelpful, could there be another in the practice who you could see instead?
It is important to understand that many of our clinicians receive NO TRAINING whatsoever in B12 deficiency. Some receive a little, but what they may be taught is not necessarily up to date – or their training focused solely on PA (pernicious anaemia) – and the frankly ridiculous notion that anyone without a definite diagnosis of this or the presence of anaemia does not require treatment.
It is not the fault of the trainee doctor or nurse that this vital education is missing – but countless patients have provided a valuable opportunity for CPD by providing information for those in qualified to be in charge of their care. Many times this is ignored.
When doctor’s don’t know best….
I know how difficult it is for patients to challenge their doctor regarding treatment, but if you, or someone you love is being desperately under treated for this vitamin deficiency then it is essential that you, or someone close to you, takes the bull by the horns and speaks up as firmly as possible.
I hope the NHS Constitution will help you to do this.
1. You have to ignore the idea that you are upsetting the doctor, or that you are insulting them by questioning poor decisions about your health and wellbeing.
2. You have to believe doctors are no different from you, they have just learnt different things, read different books and passed different exams and that is all.
3. You have all the expertise on you, how you feel and how your deficiency effects you. You have to not be shy about sharing this in the face of such ignorance.
Ask yourself how you would challenge a joiner who mistakenly removes joists that make your roof safe?
Or a plumber who’s poor workmanship means that carbon monoxide is leaking into your bedroom?
You have to rid yourselves of the idea that the ‘doctor knows best’ when you know that their actions are doing harm.
You are not a lesser being than your doctor. You absolutely matter.
If you need help with complaining for FREE you can contact your local council or local Healthwatch team to find out about independent NHS complaints advocacy services in your area. Complaints Advocates may help you to write a letter, attend a meeting with you or explain the options available to you.
If you have already complained to the GP, the Practice Manager, the CCG, NHS England, and are still unhappy then;
You can contact the Parliamentary and Health Service Ombudsman (PHSO) which makes final decisions on unresolved complaints about the NHS in England. It is an independent service which is FREE for everyone to use.
To take your complaint to the Ombudsman, visit the Parliamentary and Health Service Ombudsman website or call 0345 015 4033.
You can of course complain to you MP and ask for help, some will oblige, others will direct you to NICE or NHS England.
Why not print this blog post out and help your GP or advocate to understand the situation better?
The home page of the site helps to show the issues facing patients; www.b12deficiency.info
If you need personalised support, please see my Contact page.
Very best wishes
Tracey
I am on B12 i had Cancer four times had too major Operations lost a lot of Blood my B12 count was 102 i feel absolutely tired all the time but my GP won’t up my B12
Dear Joan,
Please get someone close to you to read the link and contact the advocacy services detailed on this post. You should not be left feeling like this when you are desperate for more frequent, inexpensive, and harmless B12. There is no clinical evidence for the 3 monthly regime that many patients are held to. Please see http://www.www.b12deficiency.info/blog/2016/02/16/uk-b12-deficient-patients-paltry-3-monthly-maintenance-dose-of-b12-injections-is-based-on-cash-not-care/ Unfortunately patients are having to educate their doctors whilst they lack the up to date information they need. Best wishes
Tracey
Thank you so much for your help and advice. It’s invaluable
Hello everyone…i am having some of the symptoms related to b12 defieciency since 2013 September,but recently i got checked the b12 test…and my levels are 107.7pg/ml…doctor gave me tablets that contains mythylcobalamine…and told me to consult after 3 weeks..already 1 week is over….but it took me 4 years to know what the actual problem is…
I think you need more than tablets with your results
Dear Tracy, thank you so much for all the super info, since my B.12 was stopped in November 17 from monthly, I have not been running on all cylinders intact that’s an understatement, normally such an out going individual now feeling like a train wreck, everything such an effort. Have always been strong but this never ending saga with the G.P’s is totally destroying me. Reading your blog has helped enormously. Thank you Karen
Dear Karen, I hope your GP has seen sense now. Best wishes Tracey
My partner is having is B12 stopped, been on it for years for pernicious anaemia, this developed after his treatment for Hep C with interferon. He also has chronic fatigue and they say his blood test came back ok and life can be a struggle,they say his blood test came back ok so it is being stopped. I am very concerned about this, he didn’t even see the doctor it has all been done by phone.
Wish me luck. My doctors want to stop my 12 weekly injections after 14 years as they seem to think ‘I’m better’. I have no choice but to fight or have no life.
My gp has stopped b12 injection and placed me on iron tablets is this normal?
Hi Paula, your GP should not have stopped your B12 injections unless you have no need for them, the only way you would no longer need them would be if you were now completely well and symptom free. If this in not the case then please refer your GP and or the nurse to point 6 here: https://www.b12info.com/blog/what-to-do-next/
Iron tablets do not raise B12 levels, best wishes Tracey
How can they do this to us !! I was told by the nurse practitioner to buy tablets on Amazon !!! I have never bought medication on line I wasn’t told what to buy, which I think is a very un safe way for a so called health professional to go about my health care, I was told the rules are the rules and no way was I getting my injection thank you NHS.
Hi, I was diagnosed with pernicious anemia Vitamin b12 deficiency in 2015 after years of suffering mental, physical and neurological symptoms and was told on injections for life every 12 weeks.
2015-2017 was a to and fro situation with GP as I know my body and know when I’m low b12, they said antidepressants I said not needed, just need more frequent injections. So after trying out various antidepressants that didnt work they finally allowed every 8 weeks. From then on I have been fine, no antidepressants needed.
In may 2021 had docs phone appt as had elongated and heavy periods low low mood felt constantly pre menstrual as I was always on my period so I was referred for a scan.
Had that Oct 2021 was told I had 32mm fibroid (which I am awaiting a appt for) and prescribed fluoxetine to level out my moods.
From Oct to Jan 2022 still suffering 3 week heavy periods which knock me out so when I had my b12 injection this month my usual nurse asked how I was I said I still have the fibroid that’s causing all sorts of issues felt and looked worn out so she suggested blood tests. I had these blood tests done within 36hours of having my b12 injection. As my b12 levels came back as 2000 I have to have another blood test just before my next injection and depending on the result of that will mean whether or not my gp will allow my next injection. Was I misdiagnosed in 2015 telling me I would be on this for life, now another gp has my b12 levels under the spotlight.
This is really stressing me out please could you help me?
So I received a call today to tell me my8 weekly B12 injection is stopping and to purchase tablets on line. ‘What dosage will I need, I asked. Only to be told 1 a day ‘will it work the same as the injection’ I asked – no, about 40% of how the injection works. I reminded them that before B12, I could barely work/function and had no quality of life and am so scared that that will be my future. B12 gave me back my life. I will now look at whether I can purchase this privately. How can they do this.
Dear Sarah, have you spoken to your Practice manager? Have you seen this latest update from the BSH? https://b-s-h.org.uk/media/18259/bsh-guidance-b12-replacement-covid-1924042020finalversion2020-4-3.pdf? Hopefully this will help them to understand they are making a mistake.
Best wishes
Tracey
My 95 year old mom has had B12 injections for the last 35 years. My sister who she is living with at the moment received a telephone call from the district nurse today and told that they would not be visiting mom to administer B12 as the doctor has said she has no diagnosis of pernicious anaemia in her records. She didn’t offer any alternative. We as a family are disgusted.
Sandra, this is appalling! Would your sister be able to give your mum B12 injections with some instruction? Have you seen this new Guidance from the BSH? https://b-s-h.org.uk/media/18259/bsh-guidance-b12-replacement-covid-1924042020finalversion2020-4-3.pdf?fbclid=IwAR2QDtNDzyxqkEaeYEp5EOGQkH2HhZAw3pLSnYfn3rrFSHX8kZ1bkZYLhVY
Please see this blog too:https://www.b12info.com/blog/blog/2020/04/28/go-back-to-your-gp-if-they-used-the-previous-bsh-guidance-against-you/
Don’t be fobbed off, your mother should not be denied jabs because the cause her deficiency ‘might’ not be PA there are so many causes! https://www.b12info.com/blog/what-are-the-causes/
Best wishes
Tracey
My doctors stopped my b12 said blood test was OK, but am now getting pins and needles sensations and very tired.
Sharon they should be listening to your voice. Have you told them your symptoms have returned? Have you tried using this with your Practice manager?
https://b-s-h.org.uk/media/18259/bsh-guidance-b12-replacement-covid-1924042020finalversion2020-4-3.pdf
Best wishes
Tracey
Myself and my husband and my son are on b12 injection because of the coronavirus we cannot have it what can we do we was told by the receptionist we have to buy tablets we are both in our 70 and my son is 40
Dear Mrs Parry, please speak to the Practice again and talk to either a GP or the Practice manager, please see this page for help: https://www.b12info.com/blog/covid-19/ There is a link to updated BSH Guidance which will hopefully help your GP to understand.
Best wishes Tracey
My GP stopped my injections(every 12 weeks) just over a year ago after beginning in 2007 with severe deficiency . He said people were being wrongly treated and I didn’t have PA. On injections last reading was approx 1400 ng/L a few months later about 440 ng/L then early this year about 240ng/L I tried to query it and was told my levels were better than the majority of people in S_____ where I live and he didn’t know why people in S_____ had such low levels. I could take tablets and did I know that you couldn’t overdose on b12. He also said my levels would probably continue to drop until they reached my normal.
I paid for private test recently levels were 123pmol/L which place told me was about 167ng/L but that was normal (their normal range started at about 25pmol/L . I tried querying the fact that I am concerned that it just keeps dropping rather than specific levels. I am vegetarian but am now taking tablets . I have long-standing unrelated but undiagnosed nerve pains in both legs and don’t want it getting worse. I know pain meds tire me but can’t take much due to side effects but last few weeks I am exhausted and fall asleep in afternoons with no energy. I feel how I did before diagnosis. Am awaiting spinal cord stimulator being fitted for pain so I know I am stressed but it doesn’t feel like that. Feel I have no one to talk to about b12who will listen.
Sharon this is appalling, which country do you live in? I do offer personalised help if you would like more information please see: https://www.b12info.com/blog/contact-me
Very best wishes
Tracey
Hello I’m new to having a B12 deficiency nobody really explained anything to me I have had to pretty much google everything.. reading your problems about nerve damage I too have that in both legs and the pain is awful also in my feet and my ankles are numb could you please me tell me what the best pain relief is please any help would be much appreciated xx
I know this is all a long time ago, don’t know if thread still current, but I find I have complete sympathy from GPS, but it’s the nurses that try and disrupt everything. Like they absolutely can’t be bothered. The doctors always say (as I was supposed to have them every month) “well, we determined that you were supposed to have them every month, but we can’t find the evidence as to why so just try every 3 months” and from there the nurses try to stop it completely. It’s like the doctors agree with you, but are led by the nose by the nurses.
Hi all
My doctors stopped my B12 when in lockdown however as I am a key worker I emailed my practice manager and he agreed to issue it as he said it was stupid not to in my circumstances.
Now it is due again and another GP is in charge of phoning everyone (all 400) currently having B12 and reviewing all cases.
She is saying people get addicted to having the injections and my blood levels are above many other peoples and there must be another underlying cause of my symptoms. So is stopping them.
I challenged her decision and she wants a blood test first to check everything else is in order.
I firstly got diagnosed in 2014
Had a review blood test in 2018/19 to check levels and they were low.
What shall I do?
Thanks
Natasha
Natasha, your GP needs to update her knowledge, its a bizarre waste of time and money retesting levels of patients once on treatment, in order to justify stopping treatment. B12 treatment can continue whilst they ‘look’ for other causes of your B12 deficiency symptoms.
Listening skills are what this GP needs and some good old common sense. If you would like me to help please see this page: https://www.b12info.com/blog/contact-me
Best wishes
Tracey
Hello has anyone got a letter that helps me tell my doctors there wrong and they stopping my injection after years and there the only way I function please help
Kelly please see this page: https://www.b12info.com/blog/covid-19/
My Surgery is normally very good, no problems. However, upon trying to book an appointment to get B12, it is a nightmare. The nurse and reception refuse to give even 2 days in advance – you explain that you have been “dragging yourself around for the last 3 weeks” and it is only 2/3 days and they argue the point. I even went so far as to say “I dont understand the problem, one cant overdose on this, you pee it out, and it is only a couple of days, perhaps I should book a GP appointment.” To which they then responded I couldnt book, would have to ring at 8.00 a.m. in morning which would virtually take me to their 3 month original deadline.
It is frustrating. They did stop it in lockdown, and tried to do so again, until I insisted – and now get in the car park. Not sure why such a big issue. It takes all of 10 seconds. The appointment is so short.
The fact that the symptoms mean life is a drag, and such a cheap, and easily provided vitamin is so helpful and they refuse it does not make sense to me.
I have other friends who have similar experiences.
I would like an update please on Tracey’s petition to Parliament. Well done, Tracey, and thank you.
Kate
I had my injections stopped at the start of lock down, got them reinstated after becoming symptomatic. They are now trying to stop them as my intrinsic factor test done 3 years ago came back negative. I am still suffering some symptoms even having 2 lots of injections but they say it’s nothing to do with not having my injection.
Totally ridiculous response from the Practice Victoria, what on earth do they think it is to do with then? Please see this page: – https://www.b12info.com/blog/covid-19/
Hi I had a phone call from the practice Pharmasist to say I could not have my B12 injections anymore and I had to take tablets at my expense. I have just reached 66 years old and do not understand why I cannot have the injections should I being this up with my doctor or is it not worth it. I am also getting conflicting remarks on how much to take as a tablet form
Elaine this is outrageous! Could you ask the Practice Pharmacist to put in writing why they think you do not need to have B12 injections anymore?
I would absolutely bring this up with the doctor.
Ask why your treatment has changed when your condition hasn’t – remind them that B12 injections are for life when you cannot absorb B12 from food.
If you need help with tackling the GP, I do offer this as a service. Please see this page: https://www.b12info.com/contact-me/
Please let me know how you get on!
Best wishes Tracey
Help! My B12 injections were stopped about 5 years ago as I apparently didn’t need them anymore as I can buy tablets online! Been feeling like a train wreck for last year. Went to dentist with bad mouth ulcers, referred by him to consultant and consultant straight away asked if I had ever had B12 deficiency. He took bloods and B12 came back as 107, he rang and advised injections. Doctor still won’t do them he said can buy over the counter supplements. I suffer depression/PTSD/anxiety, my lower legs are forever hurting, feet numb, hands pins and needles and always so tired. I am just recovering also from laryngitis which I have never had before. I feel beaten by the GP and by life what can I do? Thank you.
Hi Deborah
This is appalling! Does the consultant know that the GP stated this? Is there another GP at the Practice who is not as rigid as this? You are clearly neurologically affected and need every other day injections as per NICE Guidance. As I replied to Elaine – the GP should be putting his reasons for non treatment into writing to you.
If you need help with tackling the GP, I do offer this as a service. Please see this page: https://www.b12info.com/contact-me/
Many people feel they have no alternative but to self inject after buying their own supply of B12 because of this gross ignorance!
Best wishes
Tracey
This is completely outrageous Deborah. Please email me at tracey@b12info.com.
Very best wishes Tracey x
Not only do I have to make 4 separate bus journeys, 2 to pick up the prescription to take to my pharmacy and another 2 for the injection, now the nurse has decided I’m no longer in need of b12 because of a test I had immediately after my injection 6 months ago that didn’t even measure any other antibodies or other markers of pernicious anaemia, only b12 levels and iron levels…she kept the vial “because she could use it for someone else”. I don’t know what to do anymore, I’m so tired and I think I’m giving up.
This is neglect pure and simple. Please email me if you would like some help in tackling this behaviour.