email nhs treatment

Treatment concerns during COVID-19? Let NHSE know

2 Nov, 2020

So, the clocks went back an hour last week, which means, we suppose, that we get an extra hour of 2020; another hour on a year that has been like no other than we can remember.
For far too many patients who have Pernicious Anaemia the Covid-19 pandemic has brought with it an additional challenge; namely getting their life-giving replacement therapy injection of vitamin B12. Doctors, worrying about the risk of cross-contamination while the patient receives his or her treatment have, in some cases, stopped treatment.

Now, in itself this can be seen as bad practice and neglect of patient care, but we think it exposes another aspect of Pernicious Anaemia – how it is perceived by many people, including medical professionals. Far too many people consider Pernicious Anaemia to be a trivial, insignificant condition. Patients need replacement therapy injections to stay alive.

Another issue that surfaced during the early weeks of the pandemic was that there is a mistaken belief among doctors that patients ‘store’ B12 in their liver, and that that store can last up to two years. This is incorrect because although there are levels of B12 in the patient’s liver, that B12 is not ‘accessible’.

This misinformation and a casual attitude towards the disease meant that far too many patients were simply told that for the foreseeable future they would not be receiving any treatment.
At the outbreak of the pandemic we wrote to all of the U.K.’s constituent country’s Chief Medical Officers. A few weeks ago, we received an apologetic reply from the Chief Medical Officer for England’s secretariat. They had only just got around to opening our letter as they had made email correspondence their priority. After much consultation NHS England (NHSE) have issued this statement:

We were very concerned to read about the issues that patients had accessing B12 injections at the time.

We are currently in challenging times where we have to protect our patients, the public and our staff. We agree that people with proven and recognised B12 deficiency should receive replacement therapy. We expect GPs and staff to continue to manage the needs of their patients albeit with some flexibility which might mean alternate medications or modes of delivery. Medical care and prescribing should remain sensitive to the medical needs of the patient. Contractually, we still expect GPs to deliver primary clinical care to those who need it whilst assessing each individual patient’s needs and keeping staff and patients safe while they do so. We expect GPs to continue reviews of patients with Long Term Conditions who are regarded as high risk because of their condition or their continuing medication as set out in guidance provided to GP practices in March.

NHS England and NHS Improvement are constantly reviewing the delivery of critical services in primary and secondary care and seeking ways of safely re-establishing services where the absence of such services could put patients at risk. We would be very grateful for your help in establishing whether there remain ongoing issues for patients in accessing their B12 injections or whether these are now resolved.

Patients can complain to their local Clinical Commissioning Group or regional office of NHS England & NHS Improvement if they believe they are unhappy with the care they are receiving.

They have provided the following email address for any ongoing issues:
england.spocskh@nhs.net

So, if you have concerns over your treatment, or the treatment of one of your family or friends please let NHS England know by sending them an email; hopefully they will become aware of just how serious an issue this is.

24 Comments

  1. Janette Miller

    I am having this problem in New Zealand too. I was informed by a nurse that the relief I get from my monthly B12 injections where po7ssibly a placebo effect and intitially I was refused my injection and told to come back in 2 months! Eventually, I was given a 75% injection. The docs are now very unsympathetic and do no appear to know anything about B12 deficiency. I am allowed to self inject although I dislike doing this but was given the set up so I may be forced to do this and in the meantime, I shall take the tablets.

    Reply
  2. Jeni spinks

    Have NHS Wales been in touch? Alot of surgeries as still classing b12 as non essential

    Reply
      • Jeni

        Yet alot of surgeries are still saying they are non essential and delay treatment.

        Reply
      • Shona

        Hi, I’m NHS Scotland.(North East) Due to pandemic lockdown, I was denied 8 weekly B12 injections since April which meant my last injectiin was in January. When I questioned my Dr ‘why’? Her reply was that I actually had never been diagnosed with pernicious anemia although I had been getting treatment for 4 years due to low iron and b12 at the time. I was called in for blood test at beginning of November which showed I DO have the condition. I got one injection 2 days ago and told to come back in January next year. After the length of time of not having treatment I thought I’d need the boosters over the 2 weeks!!

        Reply
      • Kate Williams

        Has this position changed with the new ‘Tier 4’ restrictions in Wales? I’ve been told I can’t get my injection this week.

        Reply
  3. Juliana

    I also had my injections stopped 8 months ago! I have fought for them and used a lot of info from PAS to re-educate my doctors surgery who where at one point ignoring my emails! Anyway finally managed to speak to a secretary whose sister has PA so she was able to get it sorted out for me and I have now had my injections reinstated and had it yesterday. It’s wrong that we have to prove our diagnosis and fight for our life saving injections! Thank you PAS for all that you do X

    Reply
    • Juliana

      Update: I actually only had that one injection then they pulled the plug again last month! My GP is now in total denial that I even have PA and won’t give me any more treatment but will do another blood test in 6 months! I sent an email to the address you’ve given but didn’t even get a reply! It’s all so unacceptable! I don’t know what to do now?

      Reply
  4. Hayley Banford

    Unfortunately for me, the tests for PA came back negative. However, I don’t think GPs realise how unreliable these tests are. They also don’t seem to realise B12 deficiency can have many causes.

    I firmly believe my B12 deficiency is not due to diet as I eat plenty of chicken, eggs and dairy, but my GP decided it was a dietary issue at the start of the first lockdown without even asking me about my diet and removed my injections. I have had to resort to sourcing my own supplies as, having my injections taken away once before, I know how ill I get without them.

    I think it is awful that we have to beg to get something so necessary to life and that, in my experience, GPs don’t seem to understand the condition at all and are unwilling to listen the patient’s learning.

    Reply
  5. Beverly Hebden

    So into battle, once more! As with most PA patients my husband was initially refused his injection in June, this decision was overturned, thanks to lots of support from PAS, especially Petra. No problem in September, injection given even without a prior blood test. Today, however, everything changed. My husband went for his injection, the nurse explained that she couldn’t give the injection, but had to take bloods, why he asked? It’s because of the letter sent to his GP in July, from haematology, stating that prescribing oral b12 was absolutely the right thing to do! The letter mentions disagreement between BSH and PAS, but putting patients on oral B12 is the safest thing to do. The letter ends declaring in all fairness there is no evidence to suggest that normalisation of the b12 orally is any less beneficial! These words of wisdom have been signed by a Consultant Haematologist. My husband received his injection this morning as he refused to leave the surgery without it! Just awaiting the results of the blood test, before deciding my next course of action.

    Reply
    • Sarah

      There are similar stories to yours on the PAS forum on Health Unlocked.

      Reply
  6. Susan Milburn

    With the roll out of the Covid vaccines, patients may experience problems getting their B12 injection. I contacted my surgery this week, where there has been no problems in the last year to be told, that the practice nurses are on stand by for vaccines. My injection is due next week and I have classic Pernicious Anaemia.
    I will keep contacting them , but I’m not very hopeful.
    In the meantime I have purchased some B12 patches on line, whether they work or not I’m not sure. I would self inject, but getting through the NHS bureaucracy is like platting fog.

    Reply
  7. Norah Fitzcharles

    I too was told in May 2020 that my Vit B12 injection was cancelled due to COVID. I phoned Dr surgery and eventually spoke with GP and persuaded her I could self inject at home if they would supply needle, syringe and Sharp’s box. It took a lot of persuasion and her referring me to her boss but they eventually agreed.
    In August when I turned up for my next jag, I was told I won’t be getting any more as the GP practice has begun a ‘ self injecting “ programme . Instead of getting my injection, I was given a short explanation on how to do it and a prescription to pick up a kit at the local pharmacy. The whole thing reiterated my belief that PA is not seen as a priority by most GP’s otherwise how could they just cancel all injections without informing patients and then implement a self injection system with no consultation or assessment of fitness to self inject. I really don’t think they now how ‘pernicious’ this disease is or how negative an impact it has on quality of life when untreated.

    Reply
    • Linda Ryder

      My 91 year old mum was having 3 monthly b12 injections. On Novrmbef they were stopped. Tablets recommended but not prescribed. She’s trued tablets before. Don’t work. I reinstated the b1e injections with her surgery. She gir kne given by a district nurses in Ddc. 2020. Now overdue. It’s happened again. Doctor wants tk dk bloods first!! Shd us poorly and just needs a b12 injection.

      Reply
      • Linda Ryder

        I turned up fir my booked IM b1e injection. It was refused
        No one has them mord often thsn 3 monthly apparently. I should try tablets. Because if covid restrictions I’d been outside waiting in the cold .

        Reply
  8. debora sanders

    My GP has just told me he will give me a prescription for oral B12 instead of an injection. He says “we are following NHSE advice to reduce contacts and invasive procedures…you will have enough supplies in your body from the last few injections you had and will clinically let you get away without an injection for the next two months”. My injection is due next week and I am getting really stressed already. I am going to continue fighting this.

    Reply
      • Debora Sanders

        I used a lot of the PAS information to write to my GP. He prescribed me 50 microgram tablets. I wrote again. He text me again saying “no injection”. I got a telephone call with him. He was angry with me for wasting his time. He has agreed I can pick up the injection and self administer but he said he wont do it again. I said I didnt think he was following the NIHCE guidelines and he got more cross. He said he had spent far too much time on me already. Quite unbelievable. Once I have the injection in my hand, I will complain. Thanks for the help at PAS.

        Reply
  9. Mrs Pauline Price

    I have been given this link as I am having trouble with GP over my B12 injection.
    I have been having it regularly for all my life since diagnosed with Pernicious
    Anaemia and regularly since moving here 30 years ago. No problem, just one
    doctor seems to think it is not needed.
    Whereby I only attended the surgery every eight weeks, in and out, now I am forced to go and put myself at risk, and those working for Blood Tests and this is very trying, as I am 74 years old, know how I feel before and after B12, and am now over 12 weeks, feeling weak, tired, no energy, please help if you can. Cutting back injections was supposed to cut risks but now have to keep attending for nothing. Keep on about intrinsic factors, which is shown on Haematology guideline as only 50% accurate anyway.

    Reply
  10. Beverly Hebden

    As I was so fed up with battling to get my husband his B12 injection, I messaged NHSE and received this reply, which really isn’t helpful!

    Dear Sir/Madam,

    Thank you for your email

    The Customer Contact Centre is unable to intervene in clinical decisions made by a medical professional, this includes decisions about the type and frequency of medication. The patient should raise concerns about their medication / treatment with their GP. Patients can also ask for a second opinion from a different GP.

    My husband has now been told that he can no longer have a B12 injection!

    Reply
    • Linda Ryder

      My daughter has been told to book the b12 just before due rather tgdn af the appointment. Due to covid its almost impossible tk penetrate thd service. Csnt sed thd receptionist. Phone lined on hokd fir over 2 hours. Surely there ard days fir b1w civics tk book into or a text tk give sn appointment?? Causes delays in getting if done

      Reply
    • Linda Ryder

      I spoke to a district nurse. Band 6
      She had no idea about b12 injections apart from how to give them safely.
      Thought a blood test necessary tk sed if my mum needed it?
      If a diabetic s sugar levels are normal is insulin denied??

      Reply
      • Anita

        So see your point
        Am in same boat

        Reply
  11. Linda Ryder

    Again blood test levels being used to deny b12 injections especially through covid.
    Thd b12 injection quicker and cheaper to give rather thsn an unnecessary blood test

    Reply

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