stopped

Covid-19: Letter to Health Ministers and injections being stopped

20 Mar, 2020

Pernicious Anaemia Society

In the last two days we have received over thirty telephone calls and many emails and comments from patients who have been told that their surgery is no longer providing injections because of the Coronavirus pandemic.
This is extremely worrying for patients who are due, or overdue, their injection and are suffering from the symptoms of B12 Deficiency including some with neurological symptoms.
We have written to all four Ministers for Health of the constituent countries in the UK, as well as their Chief Medical Officers. We have pointed out that injections of B12 for patients with Pernicious Anaemia are not just a supplement but are needed to keep patients alive.

Essential Medicine

We will be pointing out that B12 is included in the World Health Organisation’s List of Essential Medicines and patients with low B12 will have their immune system seriously weakened thus making them susceptible to viruses. As long as patients with Pernicious Anaemia keep getting injections, so that they are not deficient in B12, we are not at any more risk of getting Covid-19 than the rest of the population. And so it’s extremely important that patients’ life-saving injections are not stopped.
We have yet to receive a reply but will keep you updated.

If you have had your injections refused because of the Coronavirus: Information for patients whose surgery or health centre has closed or is no longer providing injections due to Covid-19
We hope surgeries that stopped giving injections will decide to make them available again or look for another solution. If you have had your injections refused and are extremely worried about your health, and you would be willing to speak to the media – both magazines and television, please email or telephone the office.

Read also more here:

Pernicious Anaemia and the Coronavirus
For Health Care Professionals: Managing Pernicious Anaemia in the time of Corononavirus
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Recent developments regarding injections being stopped

Recent developments regarding injections being stopped

The problem of patients being told that they will not be receiving their injections due to the risk of spreading the Covid-19 virus has been the sole topic in telephone calls and emails to the society in the past two weeks. We are working hard to help our members in...

104 Comments

  1. nohairleft

    The whole country agreed the legal and medical system which created prescription-only medicines (and other classes of restriction) on the understanding that, when needed, they would be available for patients. The rest of the time they would be restricted in various ways for the protection of the population both as individuals and as a whole.

    Inevitably there will be some situations which are more difficult than others. There will be disagreements. Though, overall, it has continued to be mostly a reasonable way of working.
    Where the medical system becomes unable to make medicines available to those who need them, despite the actual medicines being in the supply chains, that original compact fails. And any right of the legal medical systems to manage access must be removed.

    That is precisely where we are with B12 injections. The system is failing to make available a medicine, one that is essential for life.

    In this case, the only reason for B12 being prescription-only is that it is injected. Yet others in society have access to self-injection. Two obvious cases, insulin-dependent diabetics and drug users. There may well be others.
    Alongside these restrictions we have uncontrolled Botox parties and health salon B12 injections.

    I suggest that in the current situation a legal challenge could be successful.

    Reply
    • Tracy Suddaby

      I have had B12 injected for 15 years now I am 47 years old. I am currently on lanzaprozol for acid reflux which reduces B12 in the body and reduces acid too. I am extremely fatigued and due my injection. I am worried this may not come. I am putting myself at risk but have no grounds to isolate currently

      Reply
      • Petra

        Lanzoprazol only inhibits b12 (and possibly other vits/minerals) uptake from food (and tablets) not from injections. Hope you can get your injection.

        Reply
        • William Elliott

          I’m a male 52 who is due my B12 injection I’m already showing systems that I may need my B12 early as bone marrow pains in my legs and head ache that won’t go away is driving me crazy. Now been told to isolate due to coronavirus. Like other people’s comments I’m very concerned and will be calling my Dr practice tomorrow. So come on government our life’s are in your hands and haven’t we gone through enough now this. I now everyone is at risk from coronavirus so at least give us some fighting chance to live.

          Reply
        • Wendy Churcher

          Im a 50 year old woman and have been having b12 injections since i was 20. I changed my GP in March just before lockdown. I was due my injection in June and was told they are not administering them. Im constantly tired, work long hours. Going through the Menapause, have a hernia. Heart problems. If GPs cant provide the medication we need why cant we self medicate ? I will be contacting my GP tomorrow to ask if under these circumstances can I self medicate. I know what to do and when to take it.

          Reply
      • Dar

        I am not as well education pertinent to this issue as some people, but…My Girlfriend and Mother to our 3 year old daughter has Anaemia, she requires weekly Iron and B12 injections. Even at his frequency her levels routinely drop below safe levels. Sometimes as quickly as 2 or 3 days after her last injections, sometimes cumulatively over 2 or 3 weeks of injections. She collapses several times a year, and last year required a blood transfusion. Her immune system is noticeably poor owing to her condition, I get the odd sore throat and a snotty nose for 2 days and she is ill for a week. I cannot believe this condition is not listed as an underlying condition as part of the governments Covid-19 initiative telling at risk people to self isolate for the next 14 weeks and not go to work. This is a chronic condition and statistics aside (due to there being none), she should not be going to work, nor should anyone else with this condition.

        Reply
        • Irene Lourie

          I was due my B12 on 9th April and told by my surgery that they are are not giving them for the forseable future. I am a carer and trying to work and find it difficult due to fatigue. I don’t know why these hsve to be stopped. Surely we can make slightly bigger gaps between appts.

          Reply
        • Margaret Higginson

          I have no spleen I get B12 every 10 weeks I was due to get it last week but told by surgery they are not doing it ,one big problem we really need it it is a medication after all

          Reply
        • Shamim Prophett

          I am on B12 injection and was told at the beginning of March I could not have my injections due to covid 19. My last injection was in December, nearly 5 months without B12. I am suffering from memory problems, numbness, tingling in my hands and feet and could sleep 24 hours. I am a Key Worker and attend my school job, which I am putting my health at risk.

          Reply
      • Nile

        I having loading injections of B12, and have also just been put on lanzaprozole very recently for acid reflux which does reduce B12 in the body.

        I am also extremely fatigued and due my next injection tomorrow. I am also worried this may not come. I am also putting my health at risk but yes have no “medical” grounds (according to GP) to isolate currently.

        I’m stopping the lansaprasole, It’s ridiculous.

        Need a law change immediately, re B12 being available freely.

        Reply
        • Petra

          Lansoprazol is a PPI and PPIs can interfere with the body’s absorption of vitamin B12 from food, because stomach acid is needed to separate the vitamin from food. Long term use can cause B12 deficiency (and calcium, magnesium, iron) When you get B12 from injections there is no problem as that does not pass the stomach so there is no interference.

          Reply
        • Judy

          Please allow pharmacies to do b12 injection as they do with flu shots please. I am very scared of my health right now as I have not had my monthly shot since Feb and my health is failing quickly and I am turning 65 this month and I am extremely worried about my compromised immune system

          Reply
        • S campbell

          I hope by now you are in a better way of health.im a long term lansoperasol take an have been deficient in vitamin b12 since 2014,which I have just found out. My Dr yesterday told me to take over the counter b12 and test in 3 months….. I’m 5 months in with covid, have a stammer, vision problems, headaches, pins and needles, numbness in my hands ,,,I could go on. I’m so angry this has been totally overlooked. But I’m determined to sort it out.

          Reply
        • Marnie

          I have been giving myself B12 injections for years well I was told today that needles were for the vaccine and not available. I’m only weekly shots. This is the second time I was not able to get them. I need my shots I’m already almost a month overdue. It’s really effecting me.

          Reply
      • Elizabeth Rushbrook

        I have been advised my surgery is not going to providing b12 injections they have given me a prescription for tablets. Cyanocobalamin 50mg, 3 tablets to be taken daily. one months supply to be reviewed. Is this a suitable alternative?

        Reply
        • Petra

          No it is not. It should be 1000mcg tablets. The 50 (-150) are for people with diet-related B12 deficiency (as stated clearly in the BNF!) Buy yourself some good sublinguals with hydroxo- or methylcobalamin, those are better than the standard cyano-tablets.

          Reply
        • Kirste

          My doctors letter cancelling my b12 jabs said it was in my best interest…… Not sure how that works

          Reply
        • Jane

          Cytoplan and Solgar offer sublingusls which melt under the tongue and are effective.

          Reply
        • Mr Roger Snell

          I contacted my local surgery to arrange for my B12 injection and was told that I would have to try to rebook in about 3-4 weeks time.
          My dear wife Dolores died in september and I am very sad at this time. After 10-11 weeks after B12 it is usual to feel low and I am concerned that the isolation and grieving that I feel at this time will make it very hard to cope with. Please advice if another medication is available to me. Help me.

          Reply
        • Sheena

          Your lucky to get a prescription, my GP Practice told me to buy them.

          Reply
    • Barbara gannon

      I rely on my b12 injection for me to do my job and do day to day things without having no energy whatsoever my b12 level was extremely low and could have caused a lot of damage if it had not been found

      Reply
    • Karen

      I have been on b12 injection for 10 years I have pernicious-anaemia but just been told by my doctors it’s not an essential medicine and advised just go chemist and buy something over counter they have had me in tears as suffering bad with the tell tell signs my injection is which it is tomorrow they ended up giving me a vile of the b12 and told find a nurse with needles who will give it you

      Reply
      • Jane Vale

        Cytoplan and Solgar offer sublinguals which melt under the tongue and are effective.

        Reply
        • Candie Hilton

          I’ve havnt got my B12 since march first and going through some tough few days phoned 811 and now they want me to do a Covid 19 test because of my symptoms the symptoms are very similar to B12 deficiency symptoms pharmacy’s use to to my shots now they still won’t, guess I’ll have to go to my GP even though the hours are cut back just concerned now that they think I have Covid 19 and I’m 99% sure its not from that , it is essential people have died of low B12 or have bad things happen

          Reply
      • Sharron

        I work in a school I was told to go home and isolate myself, I have asthma, high cholesterol and B12.
        I phoned and asked my doctor about injection for B12, he said my blood levels were ok so I will have to wait and it’s not dangerous not to have it. But had bloods taken not long after having B12 injection but now have head aches, loud ringing in my ears, I can think straight And tingling in my fingers and feet, am I ok to wait?

        Reply
    • Sue

      I was lucky to get my B12 injection today, but was told no further appointments were being given as doctors have said it is not essential. My next B12 is due in 12 weeks, no idea what will happen.

      Reply
      • A Cumming

        I received a letter from my GP practice on the 28th April advising me that my B12 injections would be stopped during the current Covid-19 pandemic. I was advised in the letter what foods are rich in B12. This is very worrying as I have been diagnosed with”true Pernicious Anaemia”and no matter how much vitamin B12 rich foods I consume, my body will not absorb it. I initially attended my surgery back 2017 with tingling and numbness in my fingers and toes. I have also suffered from extreme fatigue for years and many other symptoms, I now believe were caused by my B12 deficiency. I was told back then that my B12 level was dangerously low and I was given a loading dose over a period of two weeks. The very worrying thing for me is that I also have a very rare congenital heart condition resulting in the blood not being pumped around my body as it should be, thereby putting pressure on my heart which needs to be sufficiently supplied
        with oxygen. My consultant cardiologist has advised regular blood tests to ensure the oxygen levels are adequate. These B12 injections are crucial for me and the Government needs to urgently revert their decision to stop these life saving injections!

        Reply
      • Philippa Jones

        I’m over 5 months overdue now for my b12 injection and I’m seriously struggling both physically and mentally. Extreme fatigue and heart palpitations and yet I’ve been told no twice by my doctors. I’ll try again! Thanks for this advice 🙂

        Reply
      • Brenda Silver

        I have just received my B12 but after 10years I have been told this is the last one
        I really don’t know how I will be able to manage

        Reply
    • Julie Bootland

      I had a call from my surgery today to advise that my appointment on Tuesday for my B12 injection is cancelled. I have it every 10 weeks and although I was confident in that Covid-19 would not affect me, now I feel vulnerable without my jab. The nurse did say they had tried to reason with the doctors as they know how we feel when it is time for our jabs. She told me to try and change my diet as appropriate and take over the counter supplements. As I am diagnosed with PA, this is unlikely to help but I will give it a try. I am disappointed and worried on top of everything else going on.

      Reply
      • Petra

        Changing your diet is obviously not going to do anything, but you might have some benefit from good quality supplements. Use sublinguals with either hydroxo- or methylcobalamin and not just the standard OTC-B12 tabs.

        Reply
        • Mary

          The reasons for getting the injections is that most of us cannot absorb the B12 so supplements in food or tablet form will not really help

          Reply
          • Petra

            Actually we (most of us) can, to some extent, from good supplements. In a time when a lot of us cannot get injections we might be able to keep our B12 (in some way) up with these.

        • Sue

          I have had my appointment cancelled, I just can’t seem to get my doctor to understand it’s an essential medicine, I feel at a loss and don’t know what to do, any help would be greatly appreciated

          Reply
      • Jane Vale

        Cytoplan and Solgar offer sublingusls which melt under the tongue and are effective. The sublinguals are mentioned in the PAS information regarding the withdrawal of injections.

        Reply
    • Meg

      I got a letter saying my injections would be suspended for 6 months.I currently get them 2 monthly.My surgery completely refuse to supply for self injection so I self inject.They seem to think that pernicious anemia is not serious .I had to fight for 2 monthly injections as after about 6 weeks I was useless.Its a disgrace.

      Reply
      • Jackie B

        Was due B12 injection yesterday. Phone call from nurse saying not giving them at the moment. Told have to go buy 1 milligram B12 tablets take daily. Was put on injections because tablets didn’t work for me. Also pay for my prescription yearly. Is there anything else I can take as I’m on medication for my blood pressure. Been feeling drained, blinding headaches for over a week.

        Reply
    • Judith Lowther

      Agreed !

      Reply
    • marilyn brown

      My b12 has just been refused I have been having theses injections for about 16 years and get them every 10 weeks I have under active thyroid and fibromyalgia and really feel my body shutting down long before my injections are due I am a carer for my husband who has leukaemia and really need my injection. What do I do I can’t afford to get this virus which might happen if my immune defence in compromised

      Reply
      • Jane Vale

        Cytoplan and Solgar offer sublingusls which melt under the tongue and are effective. The sublinguals are mentioned in the PAS information regarding the withdrawal of injections.

        Reply
    • Christine Stockings

      I’m confused as to why they’re still doing blood tests

      Reply
    • Brenda watson

      This morring told couldt.not have b12.p.a.injection because .of.p.p.e safe guard. What safe about heath .I so worry my heath because cov 19.doctor .northyorkshire life save .me .

      Reply
    • Deborah Jory

      I have just been told by my surgery that I am unable to have my B12 injection for the foreseeable future. I am a carer and suffer from chronic fatigue and an prone to infection. Should I still work? I am extremely careful if I have to shop, which is once a week for work, we have deliveries from a local shop at home, but the family of the person I support still visit, despite me voicing my concerns from the beginning. I have worried about my susceptibility all along but even more so without regular medication. Any advice would be gratefully received.

      Reply
    • Jacqui Crowe

      I have had my injections cancelled .I have been given 50mcg tablets which do not help at all. I feel i am on the downward spiral

      Reply
    • June Berry

      I was diagnosed with pernicious anemia about 11 years ago and i have been getting inections ever since, i commented to the nurse how i start feeling it begin to wear off when i am about 6 weeks into it, my doctor sent me for a blood test a week before my next one was due and suddenly he said i no longer need them my test was fine although my body is saying different.

      Reply
  2. Jean OBrien

    I cannot understand why we have to go to the nurse for our injections. Why can’t we be shown what to do and then give ourselves the injection, thus freeing up nurses to do other treatments. Other countries allow it, why not the UK. Also patients could be given the choice if they prefer a nurse to give them their injection then that is fine. However as it stands just now, we should be allowed to inject ourselves. Unfortunately I still think there are many doctors and nurses who still do not realise how important a B12 injection is to patients with Pernicious Anaemia. I have also noticed that as you get older you are not listened to the same. ‘They’ know best, unfortunately they don’t and this is a terrible worry for seniors like myself.

    Reply
    • PATRICIA WILLIAMS

      Was refused B12 injection on Thursday said my last level was 2000 so, I didn’t need it .When I was diagnosed with Pernacious Anemia my doctor said I would need it for life I am confused and wondered if this is correct.

      Reply
        • Lynda

          I am having the 4th one today and have been told every 3 months for the rest of my life.

          Reply
        • William Elliott

          B12 injection are for life there exactly that without it we can’t produce enough red blood cells needed to oxygenate our bodies and reduce the risk of infections

          Reply
      • Sue Cater

        About 6 years ago I had a blood test just after my injection and my levels were high so the surgery cancelled my next ones – feeling very poorly just like before I had Vit B12 I went back to the surgery was tested and my levels were very low so now I always make sure I don’t have blood tests around the time of my injection. The bone pain, headaches, fatigue, itchy skin and generally feeling unwell start 3 weeks before my next injection is due.

        Reply
      • Jean Lock

        Been having B12 injections for 10 years until last September when Doctor refused and requested that I have a blood test. Then he said my Levels were high and I didn’t need it. I am really struggling now with depression and headaches and everyday tasks are a struggle. I am now going to pay privately to get an injection

        Reply
    • Collette Weldon

      I bought them in the pharmacy in Spain they cost €2.45 for five including the syringes I self medicate with it now as always struggle to get an appointment with the nurse

      Reply
    • Martin

      Reluctantly I decided to go for self administration so now get the injections on prescription (small cost but means I don’t have to faff around getting appointments). Ask your GP.

      Reply
    • Tanya

      Appointment cancelled doctor stated injection lasts 2 years! I then question why do I have it every 10 weeks then! No response! He has ignored the letter attached! My Symptoms are getting worse! Losing the will to live! Have reported to health board not herd anything!
      Im seeing drug addicts getting there fix daily outside chemist! Im a Key worker in the food industry! And am now Exhausted!

      Reply
  3. Kellie Anne Norris

    I have B12 every two months – I like many others are worried about heightened susceptibility to COVID-19 and need reassurance that treatment will be available. I have a disabled nephew and with prejudices out there it a very scary – We need ensuring PEOPLE WITH Learning Disabilities have the sAme RIGHTS to treatment for COVID-19 – are these groups also going to be last on the list

    Reply
  4. Sandra

    I have just had my B12 cancelled which is due at the end of April and this is causing me great anxiety, I was diagnosed 7 yrs. ago and asked about oral supplements and was told they were not suitable for me and I had to have the Injection every 12 weeks for the rest of my life, to preserve my immune system and to prevent me becoming severely Anaemic in the future and all the other problems this condition can cause. I cannot believe when this is a killer disease and can cause all sorts of problems that they can stop giving injections. Surely they cannot be allowed to do this, I for one am very worried about this

    Reply
    • Wendy clegg

      My husband underwent colorectal surgery for t4n2 cancer stage 3 and had a third of his intestine removed. He underwent 8 intensive sessions of chemotherapy after the surgery. He is required to have B12 injections every 10 weeks to maintain some form of immune system. His GP surgery has now cancelled this

      Reply
  5. MDevlin

    My Sister is due B12 next week.when she rang for an appointment they told her this won’t be given because of this virus. Even though the same GP told her it was for life. I’m worried also as My mother and myself are due in early May and I feel at minute I need it.

    Reply
  6. Susan Milburn

    My B12 injection was due on the 23rd March and I had a text from my surgery to contact them as soon as possible. I expected my injection was going to be cancelled, however it was brought forward to the 19th March. I must say the practice is very much on the ball and I was told they were treating the urgent cases first.
    I’m a retired nurse and have asked several times whether I could self administer as this would be more logical, unfortunately my request was refused. Perhaps it should be included in the NICE guidelines as this would not only save patients from undue stress but reduce the workload in GP practices.

    Reply
  7. Micky Parnell

    I have had my b12 injection cancelled, I have every 6 weeks which keeps me maintained, my go told me to buy over the counter these supplements do not work for me,
    Since then he has prescribed b12 but no needle or syringe.
    So I have medication with no way of administering it.
    Slightly mad I think.

    Reply
  8. Anne Cook

    I have just been advised by my GP Surgery I cannot have my 3 months B12 injection!
    I have two mechanical heart valves ,a pacemaker and bronchiectasis
    I am taking Prednisolone so my immune system not good

    Reply
    • Jason Brown

      It sounds like excellent advice from your GP. You shouldn’t be going anywhere near a GP surgery at the moment unless absolutely essential. Your B12 injection is desirable but not life saving.
      Telling you not to have an injection is protective for both you, and other patients.
      When it all kicks off in 6 weeks time you will be delighted you stayed home.

      Reply
  9. Wobblin'around

    My three-monthly B12 injection is due next Tuesday, and I have just received a text from the GP practice informing me that the appointment has been cancelled ‘in the interests of protecting our more vulnerable patients’ ! The text is from the practice nurse who is fully aware of the nature of the appointment and of my condition, and yet she offers no alternative to an appointment or the injection, and blithely advises me to ‘stay well’ ! Incredible!

    Reply
  10. Amanda Parsons

    I would be willing to talk to the news if need be – Don’t know what to do, my daughter who is 16 years old has just had her B12 injection cancelled today, she is under haematology and currently has a jab every four weeks. Was told that a different haematologist from QA Portsmouth has written to surgery stating that tablets will be find for six months or so and to buy over the counter to keep going and this will be for all B12/PA patients at the surgery going forward, so will include me too. I am currently awaiting a call from GP to discuss as asked on Monday if we could both have a prescription to SI, which was denied due to her age and it would be unethical!!. Have also contact her Haematologist for help but know that all NHS staff are under the cosh at the moment. Advice required because I can not SI her due to her age, all private clinics have been closed and because she is under 18 wont treat. She has been having this injections for the last year and a half and we had a good years fight before that. My main concern is that she experiences a split tongue and air hunger and gets really breathless in the last week before her jab. Any advice to what to say to try and fight her corner. Thanking you in advance.

    Reply
  11. Sarah

    There is more discussion about B12 injections being cancelled on the Pernicious Anaemia Society forum on Health Unlocked.

    Reply
    • PATRICIA WILLIAMS

      Had my last B12 in August for PA had severe symptoms for the last couple of months Pharmacist put me on 100mg tablet have taken them for the last couple of weeks feel awful headaches reflux stomach cramps fatigue and tingling in the hands.Spoke to the doctor today explained about the new Guideline off your site and he still refused to give it said with my levels I could go until Feb 2022 this I’d no quality of life suffer with diabetes arythmeas high BP Arthritis and redoubtable with th I s Coronavirus I am 72.

      Reply
      • Carol Joss

        I have B12 injections due to having Crohn’s. Been told I need to have tablets even though I cannot absorb the vitamin effectively . Been told that I have the antibody that indicates absorption. I feel that it is cost cutting exercise as I never paid for injection but now I have to pay for tablets . I am extremely worried about my b12 levels been having this injection for 30 years .

        Reply
  12. Carole kelly

    Just had my B12 injection cancelled is due on Tuesday I’ve had these now for 6 years every 12 weeks I’m already feeling the effects of it being due , surely that puts us at higher risk for picking up viruses!!!!!
    Dr said oh you can manage for up to 12 months without it !!!!,
    Fuming !!!!!

    Reply
    • Christine

      I had a battle yesterday 27 March .I was 3 days early . I had made the appointment originally because I was going on holiday. Never a problem in the past .

      Reply
  13. Mary Connolly

    I have had pernicious anaemia for over 20 years and am 66 now. My Inj is every 10 wks. Was due on 25th march. Told to book again in 3 months. They advised B12 supplement. Even now after 2 days I have headaches all the time.I am worried sick about how I am going to feel in 3 months. Supplements or different food makes no difference. With pernicious anaemia we need the jab. Please help me.

    Reply
  14. Deborah Weston

    I’ve had PA for almost 30 years. In Canada, we can get B12 over the counter for injections as it is a vitamin. I learned to inject myself monthly in my thigh. Also taking large amount of B12 tablets can be absorbed via osmosis in the intestines. You cannot overdose on B12. I did a test and found taking 1000 mg a day of B12 tablets almost kept my levels up.

    Good luck to all

    Deb Weston from Canada

    Reply
  15. Joanna Hudson

    I was diagnosed with PA two years ago after having tests to find out the reason behind my alopecia.
    Now my alopecia is back and I called the GP to discuss this. He told me I should have had a review appointment/blood test to check the frequency of the injections was enough. This never happened.
    The GP was very regretful that I cannot have this blood test and more so no injection, which is due in a couple of weeks. He prescribed me B12 supplements. I told him I’m very sceptical as B12 is not absorbed in the gut. He suggested I take two to three tablets daily, instead of the prescription of one a day, telling me it’s near impossible to overdose on B12. I don’t believe the tablets will work and I’ve been prescribed a placebo.
    I’m very worried about missing out on the treatment that I need so badly. As a worker in social care I’m classed as a key worker so if these supplements don’t work I won’t be able to function to do my job.

    Reply
  16. Andrea

    I’m a female of 45, and having been having B12 injections for the last 11 years, due to my job, I am being redeployed to a hospital, which will eventually have patient with covid-19, am I listed as at risk, so unable to do my job, as if I refuse, I will not get paid,

    Reply
  17. Tracy

    If our injections are being withheld, please can the PA Society urgently lobby Government to do two things:
    1. include us on the most vulnerable list so we can at least have a chance of getting supermarket deliveries instead of putting ourselves at unnecessary risk in queues
    2. Be taught at our GP practice how to self-administer B12 injections and then given supplies that cover the lockdown period/sent further supplies if lockdown is extended.

    We are at unacceptable increased risk without our injections – a body depleted of red blood cells cannot transport oxygen effectively and in any respiratory condition that will only serve to make matters worse. People are allowed into supermarkets for food so surely we should be allowed into the GP surgery for a 121 training session to self-administer.

    Reply
  18. Hannah

    I have B12 injection every 8 weeks and am due it on Wednesday. I’ve now been told as of today they’re not allowing them. I’m already fatigued so really worried what happens if this goes on for months.

    Reply
  19. vikki

    I’ve just called my GP surgery as I’m due my 8 weekly injection, the receptionist was reading a standard response and told me I needed to buy over the counter supplements, when I told her this wouldn’t work, she said I needed a GP consultation over the phone but only if I was symptomatic. I guess I will be calling again in a week once I begin to go down hill. Are we now classed as more at risk with untreated PA, surely this is counterproductive in the Covid-19 fight…

    Reply
  20. Neil M

    Ive just found out that my Appointment for my B12 Injection has been canceled too. I asked why, but was told (by a receptionist) “that it is not a serious condition and to buy over the counter supplements” !

    However, my body cannot process B12, so i cant see why these supplements will have much effect.

    Ive been getting these injections every 3 months for the last 15 years, and have always felt fine, and have had no problems since they started.

    Ime aged 51 and not in any of the the Covid 19 Risk Groups. However there seems to be some suggestions on here (and elsewhere) that in not getting the injections I will become more likely to develop serious complications than I ordinarily would have? Have I understood this right or have i got the wrong end of the stick?

    Reply
  21. Philip Atkinson

    I live in Leeds, my GP had a receptionist read me his comments over the phone yesterday after he declined my request for a prescription when I was told there would be no more Vitamin B12 injections until June or September. Mine is due next week. He also told me, via the receptionist, that he believed that I had sufficient B12 reserves in my body to last 9 to 12 months. I am unsure how he knows that as I have never had a review of my treatment in the five years since I was first diagnosed with pernicious anaemia. No one has asked me to tell them how bad I feel and what symptoms I suffer from in the week or so before the next injection. I have made enquiries and it seems we are in the midst of a ‘postcode lottery’ about this as treatment is still being provided by some GP practices, at least in Bradford. It just feels as though someone is playing Russian roulette with our lives. I appreciate that the PAS is trying to raise this with the medical community and sincerely hope that no one dies from Covid-19 as a result of a weakened immune system.

    Reply
  22. Frances Barlow

    I have had pernicious anaemia for over 30 years and am now 71 and have been told the same as others by my Health Centre that my appointment next week is cancelled and to order a B12 spray from Amazon. I agree that we should be put on a most vulnerable list. I also have Neuroendocrine Cancer and as that is rare, that is not on the list either

    Reply
  23. anne

    my B12 was stopped aswell and i spoke to my doctor as i am a key worker and she perscribed B12 tablets instead called cyanocobalamin,even though she said they dont get absorbed as well as the injections im willing to try them,beter than nothing.

    Reply
  24. Linda Sutherland

    I have had b12 injection for 6 years as tablets and supliments don’t work am home carer in the community so need to be able to do my job appointment had already been made but wen I got to surgery for my injection was told to go to pharmacy for tablets they are no good am really feeling it now desperately need that injection but not sure when or if I’ll be getting it

    Reply
  25. Susan Edwards

    I had a call from my surgery saying B12 injections have been cancelled for a YEAR! I am like all of you. We need this injection. The receptionist said about tablets, but they do not work as your stomach just throws out the B12 I am really worried, and it is really starting to scare me. I have had B12 injections since the 1970s and, like all of you I know when my injection is due. The feeling extreme tiredness, and so many other symptoms. I do not understand why they do not realise it is not a supplement, but a life saving injections. Mine is due in two weeks time. I do not know what to do. I am a widow and live on my own. I did go to the Pharmacy and they gave me tablets, but tablets do not work. I am currently considering giving myself injections. I do have two here at home. Why does not one listen to us? Do we have to be really really ill before they listen? It is essential that we have them. My friend in the USA gives herself them, and I would have a go at that. I was told to “give the tablets a chance”. With this Covid 19, it is worrying enough without all of this. What else can we do? Is there anyone we can lobby about this and make them listen? If anyone has never had pernicious aneamia they have no idea how will it makes you feel. Any suggestions would be appreciated. Sue Edwards.

    Reply
  26. Roger Snell

    I sent a comment yesterday regarding my inability to obtain an appointment for a B12 injection.

    My daughter has now managed to make me an appointment for
    this coming Monday so please ignore my previous comments.
    I am now a silver member of PAS and await with interest your
    future information
    Thank you and with my best regards and blessings
    I remain

    Roger Saxon Snell

    Reply
  27. patricia thomas

    My B12 injection was cancelled for 27th April and was told it would resume in 6 months,
    I am 76yrs old and last year had stage 3 breast cancer. I take Letrozole once a day and 40mg
    of omeprazole for my hiatus hernia and acid reflux. I am now beginning to feel very tired although I sleep well I have no energy to get up in the morning. All I want is to have my
    injection and feel well again. I went through so much last year. I will try calling my GP
    and hope i can have my injection soon than later.

    Reply
  28. Linda Jackson

    Hello, I am on B12 every ten weeks. I feel I need the injection after seven to sometimes 8 weeks. I made arrangements with my surgery just before the full lockdown for My daughter in law, a state registered nurse, to give me the injections This was considered a good move and the doctor prescribed three ampoules for a relative to pick up from the pharmacy Tescos. I then received a call that the syringes were waiting to be picked up at the reception.
    My daughter in law was kept waiting outside in the carpark for nearly an hour with two of her children in the car. I was kept on the phone waiting for them to acknowledge they would give her the syringes. The result was they would not give them to her and told me to take tablets. I informed them I had the injections and only wanted the syringes they had called me up about. I was informed that doctor had now left the surgery and the haematology department at Arrowe Park Hospital had informed them they could not give me the syringes and I must have tablets.
    We tried to buy syringes from the pharmacy but were told no.
    Eventually my daughter in law managed to buy syringes on line.

    I was lucky in that I could put my arm out of the window and she could inject me.
    I have two left and one is due. How could the surgery turn me down like that when I had made arrangements in good time. I was told to return the ampoules. `Needless to say there is no chance of that. I will be contacting the Haematology department to ask them to allow me to have a prescription for the ampoules. I do not understand why we are put in this position.

    If we don’t need the injections why are we on them? The fear of nerve damage is bad especially when the stage of memory problems is reached before the next dose is due. Why do the professionals not listen when they are told we know our own bodies and Know when we need the injection? I cannot believe they do not know what Pernicious means! What is worrying is that people may be tempted to buy online. Goodness knows where they have come from and if they are genuine.

    Before being put on B12 I was rushed to hospital requiring 7 pints of blood and told I would not have lasted another day. They were amazed I was still alive. I do not want to end up in that situation again.

    Many thanks for the site

    Reply
  29. MANDY RIDDLER

    Im disgusted by this dictate ! What is the logic behind refusal of injections? Is there some secret risk of catching corona from the injection? ( got to be absolute BS!)

    Reply
  30. Kevin Sargeant

    I’ve been reading all these submissions from fellow PA patients with mounting anger and disgust . I was an SRN for 46 years and have PA as a result of major bowel surgery over 40 years ago . I’m perfectly capable of giving my own injections and have done in the past. Luckily my 3 monthly jab coincided with the easing of lockdown but I fear a second wave . A tip for you all – don’t tread on a GP’s ego , you will get nowhere by “telling them their job” and yes , I know you are perfectly aware of your symptoms and the vital need for your injections . Make it sound as though it’s their idea and you just need their professional rubber stamping . If this fails – CHANGE YOUR GP ! Would you continue to employ a plumber who had repeatedly flooded your house? Good luck and keep safe .

    Reply
  31. Kirsten Paterson

    I was due my vitamin b12 injection back in April. My doctors surgery are still refusing my injection because the government have failed to address and Make updates on this. I know many people who have went to the doctor still to receive blood tests so a vital vitamin injection should not be denied. I’ve even written to the government and had no response. It’s absolutely shocking. I am a single parent with no support and the injection is the only thing that keeps me feeling level and normal. Without it I am extremely fatigued, tired, depressed and I also experience extreme pins and needles all over my body sometimes leaving me struggling to walk untill the feeling goes away. Without the injection also I become anemic in iron and folate levels. This has happened in the past I was extremely unwell and lost a lot of hair due to this. Vitamin b12 needs to be taken seriously it’s essential. I am extremely annoyed at the government and the doctor surgeries for denying this but allowing blood tests or contraceptive injections etc. It doesn’t make sense.

    Reply
  32. freddie

    I had major surgery back in the 80s with loosing much of my intestines, I was told then that I would need B12 injections for the rest of my life as they had to take away part of the bowel that absorbs B12 hence why I was on injections, the letter from the GP said they have looked at my notes and there was no need for me to be having them……I wonder who looked through my notes.. maybe receptionist who has no idea about my operation!!!

    Reply

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