Meeting with the Executive of the British National Formulary

by | Nov 23, 2014 | 6 comments

Eighteen months ago I submitted a re-evaluation request to the BNF asking them to look again at the treatment of Pernicious Anaemia.  The frequency of replacement therapy injections remains the single most common cause of complaint to the PA Society.  The re-evaluation was carried out, which involved a thorough investigation into any new research that had taken place around the treatment of PA (none was identified because no research had taken place), and the issue was then debated by a committee of the BNF which included my comments relating to the problem with some, though not all patients having problems getting a treatment regimen that is based on their individual needs.  Because no new evidence in the form of published papers existed the committee deemed it unnecessary to issue an update on the treatment.

Friday’s meeting was the first opportunity for me to put the case for a review on a face to face basis.

The meeting was amicable and not unproductive.  It was put to me that unless I could provide the organisation with evidence that some people need more frequent injections than others then the guidelines (and it was pointed out to me that they were just that – guidelines) would remain as they were.  It was made clear to me that, just like other aspects of healthcare, the guidelines for treating patients with whatever disease have to be based on scientific evidence not least because of the risk of any litigation claims.  That is why it is so important that we get started on the research that is already planned and financed into why patients’ needs vary.

There was one glimmer of hope, however.  I was told that if I can provide evidence that some doctors are prepared to treat the patient according to their individual needs then the wording of the current guidelines could be changed to include something like “the treatment can be varied according to the need of the individual patient”.  Again, it’s back to providing the evidence which is what I will now work on.

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  1. Shona

    I find it disappointing that the BNF (and other bodies) are so unwilling to update their guidelines, and frustrating that they are saying any changes to current guidelines would need to be based on scientific evidence.

    Where is the scientific evidence upon which the current guidelines are based?

    Should they not perhaps have to prove that the current guidelines are fit for purpose?

    I know that for me the current treatment guidelines are far from adequate. I am fortunate in having persuaded my GP to administer 4-weekly hydroxycobalamin injections for the last few months, but even that is not frequent enough to relieve me of my B12 deficiency symptoms.

    Let’s hope that in the not too distant future, things begin to change for the better.


  2. Janette

    The BNF knows that it is impossible for us to provided scientific evidence and is using this as an excuse for doing nothing. It would need a blind trial. Supposing you asked 5000 diabetes patients do take a placebo to see if insulin was necessary?

    Shona’s question is right. Where is the scientific evidence for the current guidelines?

    I live in New Zealand where I am lucky to have a specialist that allows me to self inject when I need. It is dreadful to think that I could no longer live in UK under the current regime where I should have to beg for an injection and live in fear of being refused.

    B12 is a vitamin. It is cheap to buy and easy to administer and is absolutely safe according to FDA. Where is the problem?

    Denying patients a life saving vitamin is just wrong, scientific evidence or no and the BNF should be ashamed.

  3. Eve

    My daughter was diagnosed with P.A. two years ago when she was eighteen. Her general health and mental well- being has been in decline ever since. She has her injection every two months but needs them far more regularly. She currently works full- time but is now having to consider the possibility of giving up as her tiredness overwhelms her and she regularly has sickness and diarrhoea. I suppose I’m just writing this as I can’t find a way to help her which, as a Mum, I am desperate to do. I would welcome any advice. Thank you all x

  4. Donna James

    I’ve recently been told I’m b12 deficient, and I don’t have PA. This was apparently concluded when I had my first bloods taken, where b12 was identified, therefore I’m not 100% sure I don’t have it. I was told it I had b12 deficiency with no know reason.
    I however have a good theory:- it may be related to the 2700mg dose of gabapentin I take daily- however that’s another argument.
    After having my loading doses due to neurological issues my GP has allowed me to have weekly b12 at the surgery. I’ve quickly found how lucky I am to have this.
    It would be great if anyone can provide me with any research on such frequency, gabapentin and neurological issues 🙂

  5. Jan

    Surely a guideline is just what it says…..a guide to how someone should be treated. This leaves the clinician room for manoeuvre. Whilst a protocol is in effect law and must be followed to the letter.
    I’m sure the executive of the BNF would change his mind if he was suffering from PA!

    • Martyn

      He is a She….


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