B12 cancelled. See you in six months…… if you make it

Some might say this title is dramatic, but those who are currently denied access to B12 injections, who are panicked to within an inch of their lives with coronavirus and who now have no essential vitamin B12 treatment, would probably feel it’s a completely reasonable statement.

Being expected to cope for months on end without your safe, cheap, effective and life saving injections would be like making someone climb up Mount Everest without any shoes or coat whilst carrying a donkey on their back.

I know of no other vital, life saving medicine that has been stopped during this crisis and I can’t imagine that any other group of people in the UK are being denied such an easy, quick treatment at this time.

 

 

A bleak 6 months ahead

This letter below, sent to a whole county might make the untrained eye think that it’s perfectly reasonable to stop B12 injections and give B12 tablets for six months….

Letters, emails, phone calls and texts like these are being received all over the UK, I have seen them from Lancashire, Herefordshire, Gloucestershire, Hertfordshire, Cheshire, Leicestershire, Northumberland, Tyne & Wear, Flintshire, Cardiff, Essex, Wolverhampton, Cornwall, North Yorks,  west Lothian, Midlothian, Aberdeenshire.

Here’s the text from the first paragraph;

We are writing to you on behalf of your GP in regards to your B12 injections. As from Monday, the 30th of March we will no longer be giving B12 injections to patients therefore all our future appointments have been cancelled. This is as a result of coronavirus and our aim is to protect you as well as our staff. We will restart the injections once the current measures are suspended.

Do you see the sneaky stuff in there?

What is ridiculous to B12 deficient patients is this totally incorrect and bizarre idea that we can access stores of B12. We can’t and that’s why we’re B12 deficient and why we need regular replacement, this simple fact needs to be understood.

The last bullet point is the real kicker. The uneducated clinicians will say, “you don’t have Intrinsic factor antibodies (IFA) so you don’t have pernicious anaemia (PA) and so you will stay on tablets because we decided you can now miraculously absorb B12 from food!” This ludicrous concept crops up frequently (I have blogged about it before here.) It needs repeating so often – PA is just one of many causes and they are all serious and need correct treatment.

It seems they’re going to try and say you don’t need injections by testing your serum levels after they’ve given B12 oral tablets that simply can’t replace the benefit of B12 injections. They’ll do this by saying “your serum B12 levels are high now so you must be well” whilst ignoring the fact that you’re a depressed, exhausted, broken heap on the floor.

Most of us are in a state of panic at the moment, but imagine having anxiety levels through the roof and then being told you can’t have your life-saving medication for six months because someone ignorant of your condition has decided that YOU don’t matter. Not for six months anyway.

Some people were already on their knees when their injection was cancelled because the last one they had was in December, how exactly are they supposed to function? Some of these people are key workers expected to ‘soldier on’ until they collapse, some are parents thrust into 24/7 child care whilst trying to hold onto a job or their businesses by a thread.

Bay Medical Group (For Happier Healthier people!) have added this clumsy and unhelpful Q&A to their website entitled B12 Switch to oral medication.

Tidal wave of future problems

It’s impossible to expect there to be no mental or physical health casualties among those with B12 deficiency if the only provision for them is a tablet that won’t work to heal nerves or reduce symptoms but will raise serum levels.

Many of us feel like we’re currently living inside the most bizarre film set of all time, but it is also feels a bit like a ridiculous black comedy for some with B12 deficiency.

Many of our GP’s are unaware of the mental health aspect of B12 deficiency despite depression being one of the most common symptoms.

Without B12 injections we can’t function, we can’t remember, can’t walk, can’t feel happy, can’t think, can’t hear, can’t speak properly, can’t live fully.

How are the people with returning psychosis supposed to cope? How are their loved ones expected to manage this severe symptom which is an every day reality in untreated B12 deficiency in either their child, sibling, mother or father?

We’re all told to look after our mental health during this period but these incomprehensible restrictions are making things so much worse than they need to be.

Even people without previous mental health problems are having them surface during this period of isolation. The mental health charity Sane are warning that the Coronavirus could lead to a mental health epidemic.

Cutting essential, cheap, effective treatment for thousands of people through a lack of understanding of a common condition is beyond foolish. In fact it’s a time bomb and there will be guaranteed casualties amongst B12 deficient patients who only take oral tablets during this period.

The WHO

The World Health Organisation states the following in their document Mental health and psychosocial considerations during the COVID-19 outbreak 

The following directives are appropriate for those with B12 deficiency; –

Messages for team leaders or managers in health facilities:-

16. Manage urgent mental health and neurological complaints (e.g. delirium, psychosis, severe anxiety or depression) within emergency or general healthcare facilities. Appropriate trained and qualified staff may need to be deployed to these locations when time permits, and the capacity of general healthcare staff capacity to provide mental health and psychosocial support should be increased (see the mhGAP Humanitarian Intervention Guide).

17. Ensure availability of essential, generic psychotropic medications at all levels of health care. People living with long-term mental health conditions or epileptic seizures will need uninterrupted access to their medication, and sudden discontinuation should be avoided.

Messages for older adults, people with underlying health conditions and their carers

22. Older adults, especially in isolation and those with cognitive decline/dementia, may become more anxious, angry, stressed, agitated and withdrawn during the outbreak or while in quarantine. Provide practical and emotional support through informal networks (families) and health professionals.

24. If you have an underlying health condition, make sure to have access to any medications that you are currently using. Activate your social contacts to provide you with assistance, if needed.

People who can only keep their psychosis and depression caused by B12 deficiency at bay with B12 injections should surely be considered here?

B12 (hydroxocobalamin is listed as an essential medicine by WHO (see page 19 here) but it seems this is not understood by many GP’s.

Injection discrimination 

There are often comparisons made between insulin and B12 injections and whilst everybody understands that insulin is essential and required by each patient in different amounts some health professionals mistakenly think that B12 is a placebo, a frivolous want for lazy people with hypochondria and Munchausen’s Syndrome. They also think that we all need the same measly amount regardless of our symptoms and level of damage. B12 is as important to patients as insulin is to diabetics.

Our friends and family outside of the B12 world see our predicament as bizarre, they ask us the following questions about B12 injections: –

Are they life-saving YES

Is it expensive NO

Can you overdose NO

We can ask the same of questions about insulin: –

Is it life-saving YES 

Is it expensive YES

Can you overdose YES

Can you imagine the outrage if insulin were stopped for six months?

Methotrexate, heparin and insulin are all automatically given to patients to self inject at home, but all these are medications which need strict control, in contrast B12 injections (hydroxocobalamin) cannot be overdosed.

Immediate Solutions  

B12 is essential, if you are prescribed B12 injections then it means you cannot absorb B12 from food so oral tablets won’t work.

The British Journal of Haematology state:

“The use of high dose oral cyanocobalamin is licenced for use in several countries….however the efficacy and cost-effectiveness…is yet to be established.”

And I am stating:

Vital treatment should not be restricted or stopped.
We are not in a war.
There is no shortage of B12.

We of course appreciate that GP Practices are under huge pressure at the moment and that many are experiencing staff shortages but there is always a way around these problems.

Practices need to reinstate B12 injections for anyone who is well and can get to the surgery or prescribe B12 ampoules and sub cutaneous needles for people to collect from a pharmacy so that they, or someone close to them can give them their vital injection. (Sub cutaneous injections would be most sensible for patients to use and are the route most who self inject choose, myself included.)

We need our doctors to get behind this movement so that they and the Practice nurses can be freed up from giving injections to those who can inject themselves.

For the sake of the GP’s and nurses who are too busy to teach you to self inject, here are some helpful NHS guides below;

Self injection with sub cut;

https://www.qegateshead.nhs.uk/sites/default/files/users/user53/gynaeoncology/IL426%20Subcutaneous%20Self%20injection%20for%20anti-coagulation%20treatment.pdf

Link for how to break an ampoule and load syringe;

http://www.bristol.ac.uk/media-library/sites/vetscience/documents/clinical-skills/How%20to%20Open%20a%20Glass%20Vial.pdf

We need to be concerned about those people who are unable to function due to lack of B12 but who daren’t insist on treatment, those who quietly accept that their essential injection has been stopped. Our GP’s must be vigilant here and check on those at risk because they don’t want to, or feel they shouldn’t make a fuss.

Petition – Doctors, help us to get off your backs!

I’ve had numerous emails and comments detailing particular struggles with the denied access to B12 from all ages and the one solution which could make this situation better now and in the future is to make injectable B12 available over the counter from pharmacies. This would remove an enormous financial and time burden from the NHS, and GP Practices and would allow the panic to, at least partially, subside in hundreds of thousands of people in the UK.

If your doctor is on our side (I know that some are) please ask them to support this petition and share it with their colleagues.

Please consider joining the 89,000 + kind people who have already signed and shared our Petition.
(Please note: Every time you sign a change.org petition you will be asked to ‘Chip in’ money, but be warned, this money goes directly to the very wealthy change.org company and not a penny goes to the cause you might support.)

If we can get The MHRA and other NHS agencies to help us at a time where barriers are being removed then the tidal wave which is already gathering speed could be slowed.

Removing barriers

On Twitter, there’s evidence that some doctors are celebrating the fact that during this crisis, barriers that made their patient’s and their lives difficult have been removed in minutes, funding hasn’t been blocked and they can do parts of their job more easily…..

Martin Marshall (@MartinRCGP) Tweeted:

“2 emails from friends overnight saying the same thing, one a GP and local NHS leader and the other a clinical academic. They say they’ve achieve more progress in their work in the last 6 days than in the previous 6 months. People are making things happen and barriers are removed.”

Well isn’t now the time for B12 patients to get a piece of the action and have their huge barrier to good health removed?

We are living in unprecedented times but whilst all of us are in this mess together and whilst our backs are against the wall we need to see the great opportunity for change before us. Perhaps now there’s a real chance that we can get our B12 injections made available over the counter and bring us into line with other countries around the world so that we in the UK aren’t left behind.

Good Practice

It’s important for me to acknowledge that there are brilliant Practices in the UK that know their patients need their B12 injections and are either still administering them or are prescribing ampoules and equipment to make it possible for patients to self treat. (My Practice is one of these and I am so grateful, thank you Doctor B!) Anyone under the care of these good Practices will be eternally grateful for their understanding and care at this time. Many would give up their first born to be treated by you!

Take care and stay safe,

Tracey x
www.b12deficiency.info

 

Digiprove sealCopyright secured by Digiprove © 2020
Acknowledgements: WHO, Martin Marshall

25 thoughts on “B12 cancelled. See you in six months…… if you make it

  1. the doctors dont give a toss about there patients my partner needs them every 3 months not had any since march and she feels like crap but do doctors care NO they dont

  2. Hi All forgive bad grammer .the only thing I can think is they are trying to kill us off , soon after my 60th birthday my folic acid tabs were stoped , now they have stoped my B12 shots permantly while I was paying for my meds all was well .

      • I think for myself and my GP this has gone to far, for those GPs who think they are Gods are blinded by there own arrogance (what could I possibly know ) I did write to him to add to his arrogance I can now add ignorant, Me I sent off to germany and got 2 years supply to self inject, I was one of the lucky ones I was getting monthly jabs so after 5 weeks I was like a dead kipper , so I needed to do something as I still work full time ,love what you are doing

        • Kevin, thank you for your kinds words, hopefully some of what you wrote may sink in and be remembered but too many, like you, have no alternative but to look after themselves.
          Very best wishes
          Tracey

          • Today is the 4th of august 2020 I have just injected myself for the 4the time in my thigh did it sting just a little . I do this each month . I believe each time you wait and become symptomatic. A little damage is done . From a single injection within 72 hours over 70 % is lost in your urine. My gp said I don’t need my injections because my levels are high . Not differentiating between active and inactive . For all the people who come to this site I’m truly sorry for all of you . For me b12 is the magic potion . That improved my health beyond belief .

          • If I could add to my post please . Just read the miss information study . To be honest GPs don’t diagnose anything they are so frightened to miss diagnosis. They just give you meds and hope they don’t see you again . After I was put on folate and B12 injections . I did more and more research . Most concluded that in a 72 hour period most of the injections was lost in you urine. One paper I read the Dr recommended treating symptoms and continue until those symptoms subside regardless of blood readings. I reckon some of you guys will have seen it. Great job Tracy love what you are doing

      • Hi, I have B12 injection monthly, I am the 3rd Generation to have this, after 6 years of injections however my practice nurse has told me I don’t have PA, you only get it if you have Crohn’s disease or the bottom part of the bowel removed! I just have a B12 deficiency and not to come back for 6 months! Have been 5 weeks without injection. Am falling asleep, had nasty fall. No doctors at our surgery since C19. These nurses are running the practice.

        • Beatrice this is ridiculous, PA is just one cause, there are so many and most GP’s and nurses are totally unaware of the fact that people who don’t have PA but are deficient due to another cause must have B12 injections too. Have you tried speaking to the Practice Manager? Perhaps send them this page? https://www.b12deficiency.info/what-are-the-causes/

          If you would like my help, please see this page for more information https://www.b12deficiency.info/contact-me

          Best wishes
          Tracey

        • Hello Beatrice im so sorry to read this , i am in the Same boat . as well as falling to sleep i have breathing problems joint pain degenerative disc disease without B12 I am crippled with pain , after 10 years of free flu jabs ,now i find I’m not entiteld,. No Drs at the surgery .20% of the NHS has been working ,and the rest gone in hiding for there life, neglecting all . Tracy is doing a great job, all what iv said will come out in the end ,and instead of clapping for out heroes they shun them,

  3. I finally got my B12 on the 8th of June. The only reason I got is was because my GP practice asked me to come in for a blood test for an unrelated issue. I told them, B12 first, then you can do my blood test.

    Before that, I’d had to keep using B12 transdermal patches I bought on Ebay, not knowing whether they would work of not, but figuring it was better than nothing.

    I had even told my surgery in the covid interim, that I would be willing to leave my shielding and home to get in my car, get out of it in the GP car park, and have the nursing staff open an upstairs window and fire a B12 injection at me via an animal tranquiliser gun.

    Because of the delay due to covid, I have pins and needles in both my hands and my feet, which will be for the rest of my life.

    • Same here! Pins and needles! I have a b12 injection every month but now it’s been four months! I couldn’t stick feeling like c…. any more so I rang the surgery and spoke to the nurse who was horrified that I hadn’t had my b12! I had an appointment for 4.20 that afternoon!! Feeling a lot better and thinking of using the patches as well now!

    • I hope they actually mean “at intervals of no more than 12 weeks”. 12-weekly is a bare minimum – per the BNF, people with neurological symptoms should be getting injections every other day until there’s no further improvement, and then every 8 weeks. Of course, many people struggle even then.

      • I wrote a complaint letter to my gp saying I need this injection and could they please show me how to self administer. This evening I had a response saying that they have reviewed my medical records and they do not believe I need the injections anymore and therefore they will stop them and test my blood in 6months and yearly thereafter. I am beside myself. I complain and now they are refusing me them permanently.
        I need some help.

  4. If B12 could be proven to be stored in your body for 7 months, my guess would be that NHS would have set their B12 injection frequency at 71/2 months ! Instead of 1 month, later changed without cause to 2 months, later changed again without cause to 3 months, then (oops, gone too far) step back to every 2/3 months.

    A healthy person might have a few years of emergency B12 storage in their liver, but it will have been depleted by the time you are tested and found to be deficient.

    Some people are still been given their B12 injections, some are being taught how to do it themselves/ partners are taught by the nurse, then supplied with B12 and sharps, some have been given pills, some have been refused anything and sent away in tears….
    because this is such a lottery, many, many people have ordered their own supply from abroad and are teaching themselves how to self-inject .

  5. I self inject with an Autoject 2 and a 1ml 29gx13mm insulin syringe. Thankfully in Australia we can still get the ampoules over the counter. This is an easy method and there is no need to go to the GP. Hope this helps, assuming you can get the ampoules.

  6. Regarding the intrinsic factor antibody (IFAB) test, a negative result doesn’t even rule out pernicious anaemia (PA) – only around half of people with PA have a positive result for this test. The British Committee for Standards in Haematology guideline states that a negative IFAB result does not rule out PA. And yet many GPs are still using a negative IFAB result as an excuse to deny proper treatment!

  7. Told by Practice Nurse today GPs not licensed to prescribe B12 injections for patients to collect from pharmacy so even though I have a grand daughter who is a qualified nurse I cannot have the syringe and B12 for her to give me. Nurse told me to ring back in 2 months and that B12-is stored in the body for 7 months. I have Crohns, I have had all of my Colon removed and I have a Stoma. B12 keeps me alive. My last injection was on December 4th. I am one nearly 5 weeks overdue.

    • My GP prescribe my B12 for me to pick up.

      New advice form the BMA to GPs on how to cope with Covid-19 says this

      Vitamin B12 injections – consider teaching
      appropriate patients to self-administer and
      ensure frequency is not more than 12 weekly

    • Hello Carol My surgery has stated no more B12 injections (Government policy??) for A YEAR! I cannot go without it. I am so stressed out. Mine is due in a month. Have been offered tablets by pharmacist, but lack of the intrinsic factor just makes oral B12 thrown out. Also suggested a spray that by passes the stomach. have Ulcerative Colitis too and suffer anxiety and depression. It seems to me that we are the forgotten ones. Good luck to you Carol.

Leave a comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.