statement covid-19

Statement on the current Covid-19 pandemic and treatment being stopped

11 Apr, 2020

STATEMENT ON THE CURRENT COVID-19 PANDEMIC AND PATIENTS’ TREATMENT BEING STOPPED

Pernicious Anaemia Society
This society is aware that the current Covid-19 pandemic is putting unprecedented demands on the NHS and that medical professionals at all levels are working hard not only to treat patients who have contracted the virus, but also to prevent the disease from spreading. This society is grateful for the dedication and commitment of all front-line and ancillary staff working in the health service and understands completely the need to introduce special measures to minimise the risk of contagion amongst patients, carers and the wider population.

THE PROBLEM

One of the measures that has been introduced in many, though not all surgeries and health centres, has been to cancel the replacement therapy injections of Vitamin B12 used to treat patients with Pernicious Anaemia in order to minimise the risk of cross infection. This has led to this society being inundated with telephone calls, emails and social media posts from patients who have been told they will no longer receive their life-saving injection. This group of patients are frightened, some extremely frightened, that they will develop irreversible nerve damage, and may even die, if they do not receive their treatment. Whilst this society acknowledges that cancelling appointments will help to minimise the risk of contamination, we are disappointed that patients are not being told of other given alternative treatments which will hopefully prevent any nerve damage and might help alleviate the symptoms of B12 Deficiency.
And, of course, patients who don’t receive treatment will have their B12 levels depleted which seriously compromises their immune system, leaving them more vulnerable to Covid-19.
Consequently, we consider the Treatment of Pernicious Anaemia to be essential.

THE SOLUTION(S)

The most sensible approach to patients getting their treatment is that outlined by Public Health Wales who have stated that on the day of the appointment, the patient is telephoned by their GP or nurse and asked a series of questions relating to the symptoms of Covid-19. If the patient has any symptoms then he or she has the appointment cancelled. If there are no symptoms then the appointment goes ahead.
If the appointment is cancelled then other delivery methods should be discussed. These include:

  • Self-Treating. This is advised ‘where appropriate’ by the RCGP & BMA.
    A great many members of the Pernicious Anaemia Society already self-inject after receiving training from a health professional using Hydroxocobalamin and sterile equipment prescribed by their GP.
  • Prescribing B12 injections to the patient who then finds a health professional – usually a family member or friend – who will inject him or her at home.
  • Those that would not be able to self-inject, should be provided with an alternative delivery method.
  • Although there has been no thorough evaluation of these alternative treatments, some patients have reported positive results though others do not. Some patients respond better to one alternative treatment than others. These are widely available from internet stores such as Amazon. We recommend monitoring symptoms when using one of the alternatives. Two apps that can help with monitoring are Flaredown and Health Mapper.
    Popular alternative delivery methods include:

    • Sub-Lingual Lozenges
    • Sub-Lingual Sprays
    • Sub-Lingual Drops
    • Transdermal Patches
    • Ointment
    • Nasal Sprays
    • 1mg or 2mg oral tablets

Note, it is highly unlikely that the often prescribed 50mcg tablets will be of any use to patients with Autoimmune Pernicious Anaemia. These 50mcg tablets are licensed for vitamin B12 deficiency of dietary origin only. For patients with Pernicious Anaemia 1,000 microgrammes or 1 milligram should be provided. These tablets may work for some patients, but not all will derive any benefit, though why this is so is not yet understood..

37 Comments

  1. Adrian Jury

    This sums up exactly what we feel. We have not been given any written information despite being told that I would receive a letter from my GP in Melton Mowbray. I have been given conflicting information when I have telephoned.

    Reply
    • Sarah-Louise

      Our doctors didn’t even contact us. They are just notifying people when they call to book appointments. Injections suspended, no option to self-inject and no alternative form of treatment as ‘it’s fine for us to go without them for 6 months’ and the person I spoke to didn’t know whether loading doses would be provided if people had to go so long waiting for their injections. I have a family member in England that was allowed to SI with training from youtube and one in Wales who is still getting their injections. I’m in Scotland.

      Reply
      • Marion

        My doctors didnt tell me until i contacted for appointment. Was told i will have to have tablets. My daughter is a nurse but surgery refused to prescribe sharps and syringe.

        Reply
  2. Amanda

    I have been prescribed Cyan 1000mg tablets, however went to collect from pharmacy and they need to order them in. I am autoimmune PA so I am compling with the doctor due to COVID-19 but I can contact them if I am struggling. I live in Wales and have not yet been offered any other ways to inject so far.

    Reply
    • Petra

      You can easily buy your own tablets everywhere and likely cheaper too without prescription charges. Do monitor your symptoms and call your GP if anything changes.

      Reply
      • Keith Laughlin

        My wife has been refuses b12 injection by gp in Scotland because of covid situation unacceble your playing Russian roulette with peoples lives if need be I will pay for private go to give her injection its not write the NHS has a lot of explaining to do local go practice didn’t even tell her she found out she she phoned for appointment told gp will not give it to her totally wrong and go offerd no advice

        Reply
        • Keith Laughlin

          She has explained all if this to go yesterday on the phone and was still told she will not get evening looking at private GPS

        • Keith Laughlin

          Should also point out my wife had telephone interveiw with gp yesterday does t have covid symptoms offers tablets she told gp can’t take tablets needs injection gp not intersed private gp will do it for 80pounds for consultation plus jag which I’m happy to pay for don’t won’t my wife to suffer own gp wasn’t interred angry and unhappy the way my wife is been treated also informed first minsters office if Scotland not happy

    • Elaine

      I telephoned my surgery to arrange my due 3 monthly injection. The nurse said the GP’s were reccomending a 3 month postponement. Only when I objected strongly, she said that if certain patients were symptomatic they could have the usual injection. I worry for others not as assertive!!

      Reply
    • Sara chadwick

      Just had my second o e cancelled. heartbroken Can’t stop crying. Restless legs and just can’t sleep

      Reply
    • Cheryl

      My nurse rang me 1 hour before my injection was due to explain my surgery was closed but they had arranged an emergency appointment elsewhere as B12 was classed as essential treatment

      Reply
    • Anna Toth

      Mine were cancelled but I had a conversation with a gp. I did get some info ready before the telephone appointment. I said at the end that I was able to self inject. On the day my injection was due I had a call from the nurse asking me to come in. I thought she was going to do the injection but she watched me to make sure I could and was then given everything on prescription so I could do the next one at home. I was offered tablets but explained why they wouldn’t be any good. I’ve had another conversation with one of the GPS and said it makes sense for me to do them at home all the time. People with other illnesses are allowed. She said she was happy for me to do that but she would have to discuss it with the other partners.

      Reply
  3. Linda Linda Ryder

    There is no mention of self injection of b12 prescribed subcutaneous. I put in a request to sc at home. It was refused. I know some on the forum have prescribed b12 from Gp to si sc. I think thus is more sensible than tablets and safer before proper instruction csn be done for IM at home.

    Reply
    • Paula Watts

      I lack intrinsic factor and therefore cannot absorb b12 from my stomach. I find it interesting that they think you can absorb it from tablets!

      Reply
      • Petra

        Because most patients can absorb a tiny bit without IF (passive diffusion)and there are some alternatives that by pass the stomach.

        Reply
  4. Aileen

    I am fortunate to still get my B12 inj. If i didn’t i would end up in hospital from the side effects of having PA, which defeats the object in the first place as we have an autoimmune disease. I feel for you all in this situation.

    Reply
  5. Alison Ellis

    Do we send this statement to our GP if they have cancelled our injections?

    Reply
  6. Sandra Rowe

    I had an appointment to receive my B12 injection the end of March. A week before I suffered a severe asthma attack with added complication of bronchitis and was having trouble breathing at rest and on exertion. I rang my GP and asked in the circumstances as well as having received my letter to say I was one of those classed as severely at high risk and not to go out, could I please have a nurse come to my home to administer. The GP told me I had enough B12 in my body to last for 12 months and said they did not know why many people feel they needed it on time because we all have reserves. Despite expressing the obvious my request was denied and told to ring back if my symptoms worsen. They said supplements did not work and would not recommend. I chose to order online supplements and will be ringing the surgery again to request that I self administer.

    Reply
  7. Trudy Kelsall

    The information you have received from Public Health Wales is not correct and should be challenged. I live in Wales and B12 injections have been cancelled completely at my medical practice. Instead, I received a text telling me that a prescription for B12 tablets will be sent to the pharmacy. However, your site advises that oral supplements are not suitable for autoimmune pernicious anaemia, which I have, so the tablets will be ineffective anyway! I understand the pressures COVID-19 is presenting and all health workers have my empathy at this very difficult time. However, B12 is an essential requirement and it is unacceptable that injections are being denied.

    Reply
    • JENNY

      I totally agree. My surgery in Cardiff didn’t let me know so when due I called them. Have been told to buy tablets. I’ve asked if I can have injection to SI and they refused. I am now feeling the symptoms. Ordered lozenges but feel only a little bit better

      Reply
  8. sybil Dunn

    My 94 year mother who is vulnerable and at risk has been told she can not have her b12 injection which was due yesterday . She is already showing her usual symptom when coming near her due date which is feeling intense waves of cold and now is worrying about the effects of missing her injections. I find it confusing when I living in England have recently had my vitamin b12 injection and was given an appointment for my next one. Why should SNHS be different?

    Reply
  9. Christine Gorrian

    My GP surgery has told me they will start giving B12 injections on a 6 monthly basis. I have mine every 8 weeks. They could see from my records that I have antibodies against pariatel cells so absorption would be a problem. They have said they will prescribe me oral medication anyway in the hope that it would tide me over till next injection in October. How can I go about self injecting?

    Reply
  10. Milly

    Hello there I live in wales and I have Pernicious Anaemia and my GPs are Not treating anyone who needs their B12 injection. My GP phoned me after I kept on requesting for an answer on why they have stopped It and my Gp asked me if I thought my B12 was more important than covid and do I want to risk my life by coming to the surgery and to be honest I didn’t no what to answer I did try to tell him that with out the injection I start to feel unwell and he said unfortunately that can’t be helped. As my immune system will Be compromise without b12 wouldn’t that make me vulnerable If I was to Catch covid and fighting it ?

    Reply
    • Louise

      I live in Wales and have been told that the injections have been stopped at the moment and firstly by the receptionist was told they will be providing tablets , I was then phoned to be told that the receptionist misinformed patients and that we will need to get them ourselves. When I asked the nurse will they work as well as the injection ( I know it won’t, I was told 13 years ago that my body couldn’t absorb them) she told me that she didn’t know. It’s so worrying, I do start to feel unwell when I haven’t had my injection, I also find I need to concentrate a lot harder to do simple things. Before I was diagnosed I spent best part of a year in bed and lost a lot of weight, If it weren’t for one of the doctors who done the right test I really don’t think I would be here now. So I am very worried and don’t want to be going down that road again, I have picked up Cyanocobalamin 50mcg tablets which I’ve started to take 3 times a day and I know it’s not enough but my doctors haven’t been very helpful and the lady in boots suggested these, they cost £4.99 and only last 2 weeks so not ideal but got to have something. I do understand that these are unprecedented times but to say that the injections are not essential is wrong and to me it’s very important for my wellbeing.

      Reply
      • Petra

        50mcg is for diet-related B12deficiency and are not going to help you, get some good quality 1000-2000mcg sublinguals. No guarantee, but chance they work is much higher.

        Reply
        • Louise

          Hi Petra
          Thank you for responding I will definitely look for them instead, I knew when she said the 50 mcg in boots that it wasn’t going to be enough, I really appreciate you responding sometimes you can feel like you are on your own with this especially as the doctors couldn’t even tell me much, thank you

  11. Margaret Brooks

    Myself and my daughter received our B12 injections today after being initially told we would not be having it as the doctors have stopped giving them. I eventually spoke to a nurse who said a doctor would phone me. In the meantime my daughter insisted on speaking to a doctor at our surgery. The doctor tried to palm her off saying we could wait a few months she would not take no for an answer, badgered him, and eventually he gave in and said we could go the surgery car park where a nurse would come out to us and administer the injections, which she did with apron, gloves, mask. Why can’t others do this too. My daughter was quite upset that she had to battle with the doctor, fighting our corner. She was more concerned that I should have my B12 as I have other health issues but in the end we both got it. It is such a relief. I just hope when next one is due we don’t have to go through the same harrowing time. Good luck everyone. Make a stand.

    Reply
  12. Jo

    See the BSH guidelines-

    https://b-s-h.org.uk/about-us/news/covid-19-updates/

    I think PAS need to comment on this. They are recommending 50-150mcg cyanocobalamin for symptomatic patients and that blood B12 level is checked which contradicts previous guidelines.

    Reply
    • Petra

      The PAS has done so the day it came out.

      Reply
  13. Sarah

    A lot of these issues are being discussed on the PAS forum on Health Unlocked.

    Reply
  14. Jane

    This is the text message received from my GP :-

    ‘All B12 injections have been temporarily suspended during the Covid-19 Crisis.
    We have been advised to inform patients that they should purchase B12 1mg tablets one to be taken each day which are available at pharmacies, supermarkets and health food shops’.
    Kind regards.

    I have injections every 10 weeks. If the whole idea of injections is to overcome your stomach’s inability to produce intrinsic factor, how will tablets help? Is the government being asked for clarification, as the resulting lack of immunity is not good news in a pandemic one would have thought!

    Reply
  15. Susan Childs

    22-04-2020
    I had a call from the GP yesterday. I had been getting monthly injections (which I know is outside protocol but had previously been agreed) . I had asked previously about be allowed to self inject but that was not to be allowed.
    The GP recognised I had a need for the injections and said they were not being stopping but I had to move to 2 monthly from now on as a monthly injection was not necessary. I did not argue as I am grateful to get anything but this will not keep me well. I have also been horrified that some members are getting nothing, others low dose cyanocobalamin and others told to buy their own. Only frequent jabs keeps me sane and healthy so I am not sure what I will do going forward. These are difficult times and patient well being seems to be a casualty. We really need this off prescription

    Reply
  16. Julie

    I cried all night last night after being refused my injections yesterday. I had this huge wave of panic at the realisation that they’re literally saying that they are going to let us die! And no-one seems to care!🥺 Except for PAS that is.

    Reply
  17. Greta Sainsbury

    What an absolute disgrace. Patients so worried at this time and also to use COVID on a patient who will have problems if not medicated. Surely they should have been contacted immediately the decision was made via a note in the post explaining the options.
    Where is the empathy and also not to support patients who are taking care of their health which many do not do. They are trying to stay well.
    Shame on you who have not considered your patients mental and physical wellbeing. COVID is being used by some to actually just not do their job, whilst others are, above and beyond. I for one wish to see an audit on surgeries when the pandemic is more under control. Patients inform your Community Health Councils/local Health Boards of how this situation has been handled for you.
    DO NO HARM, what a joke. Just damaging people unnecessariy, and at what costs for the future.

    Reply

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