So, we now have new guidelines for diagnosing Vitamin B12 Deficiency.  The British Committee for Standards in Haematology have produced their new ‘Guidelines for diagnosis and treatment of Cobalamin and Folate disorders’.  And this is the first update for twenty years.  What led them to producing these new guidelines?  Well, I like to think it has been the work of the Pernicious Anaemia Society.  And although this hasn’t been acknowledged publicly the new guidelines were the result of a series of events that have taken place over the past eight years.

These events started in 2006 when the society was entered onto the register of the British Charity Commission.  Although the society had been around for two years previously it was only when it was registered as a charity that people began talking to us and taking us seriously.  And it was soon after the society obtained its registered charity number that I received a letter from the Consultant Haematologist at my local District General Hospital (DGH) stating that he had come across the website and he likes to think that he is treating his patients correctly and inviting me to get in touch with him.  I remember telling the online Management Council Meeting about this milestone in the society’s evolution.  For the first time we were being invited to enter into dialogue with a medical professional.  I finally thought that we would begin to change things and achieve our aim of getting the way in which Pernicious Anaemia is diagnosed and treated thoroughly reviewed.

The Haematologist turned out to be quite a solid supporter of the work of the society.  He would attend the opening

Carrie and me at the Dept. of Health in May

Carrie and me at the Dept. of Health in May

of both of the offices that we occupied and he would turn up at our conferences.  And he is one of the authors of the new guidelines.

The guidelines were due to be published in June 2012, but, following a public showing of our documentary ‘Living with the Fog’ which took place in January 2012 in south London which the then Health Minister Paul Burstow attended. The minister promised to broker a meeting between the society and officials at the department of health in London.  That meeting took place in May of 2012 and was supposed to last twenty minutes.  Carrie-Anne, who had organised the public showing of the documentary and I attended the meeting in Richmond House in the middle of May 2012.  The meeting lasted just over an hour and a half rather than the timetabled twenty minutes.  The officials whom we met included the Clinical Director for Pathology for the NHS and the immediate past chairman of the British Committee for Standards in Haematology.  They were genuinely surprised at what we had to say – that there were serious issues with the way in which Pernicious Anaemia is diagnosed and treated.  After an hour and a half we were asked to leave so that they, and the civil servant who was also present, could discuss what to do next.  What transpired was that the new guidelines which were due to be published the following month were delayed.  Now, whether or not that delay was due to the meeting is not clear, but I like to think that the current guidelines which acknowledge that there are serious shortcomings with the current test to diagnose B12 Deficiency and whether any deficiency is caused by lack of intrinsic factor would look an awful lot different if they had been published in June 2012.

The new guidelines (a summary of which can be found on the PA Society’s website) raise important issues surrounding the diagnosis of PA.  It has taken eight years of lobbying to get medical professionals responsible for developing the new guidelines to listen to the society.  And the most striking feature of the new guidelines is that they do not address the single most common complaint by members of the society – namely that the way in which PA is treated is completely inadequate for a great many of the members.  Instead the guidelines state that the way in which the patient is treated (most notably the frequency of the injections) is a matter not for the British Committee for Standards in Haematology but for the British National Formulary (BNF).  So, whilst we have new guidelines on the way in which Pernicious Anaemia is diagnosed, there is no guidance on treatment – the BCSH has,effectively, washed their hands of the matter that is the cause of most people’s complaint.

And so now where do we go?  Well, I have had to think hard about the next steps.  I was not sure I would be able to face another eight year battle to get decision makers to thoroughly review the way in which people’s B12 Deficiency is treated.  It has been a hard decision to make but I have decided that I cannot leave the field with the job just half done.  And so I have started the long journey of getting the treatment for Pernicious Anaemia thoroughly reviewed and by that I mean that patients should receive treatment according to their needs and via a method of their choice (astonishingly no thorough review has been conducted into the other forms of delivering B12 such as nasal sprays, sub-lingual tablets and sprays or even suppositories).

I have already begun.  I have written to the Royal Pharmaceutical Society who produce the BNF in association with the British Medical Association.  As yet, my initial communication has not been answered but I expected that.  You see, if the past eight years of campaigning has taught me something it is that getting things changed in medicine takes a very long time.