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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.

7 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
  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
  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

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