Well, that was a fine first half of the year.  Two incredibly important milestones were reached and they both occurred within two weeks of each other.

The Strategic Plan of the Society, that was written five years ago, stated quite clearly that there were serious problems surrounding Pernicious Anaemia.  Firstly there was the problem with the way in which the disease is diagnosed.  New Guidelines on diagnosing and treating PA were due to be produced in June 2012 but, following a highly successful meeting at the Department of Health in May 2012 those new guidelines were postponed and after two years the new guidelines were produced in May of this year (2014).  Most importantly those new guidelines included recently published research papers that provided the evidence, the scientific evidence, that the current assay used to determine the B12 status in patients was seriously flawed.  And just before the new guidelines were issued (we were shown the new guidelines in draft form which I commented on) our own research into patients’ experiences in getting diagnosed was eventually published in the British Journal of Nursing.  This paper, designed and analysed by three doctors, provided statistical evidence – credible statistical evidence – of what was previously only anecdotal evidence as told over and over again on the society’s online forum.  And so, these two events, the new guidelines and our own paper together have shown just how poor is the diagnostic process for determining B12 Deficiency and whether that deficiency was due to the quite specific disease called Pernicious Anaemia.  It took five years for us to be acknowledged as a credible patient support group by senior figures in the world of medicine; five long years of knocking on doors and writing to newspapers and magazines before finally we secured that meeting at the department of Health in May 2012.  And then it took another two years for the new guidelines to be produced.  And if there’s one thing I have learned from that experience it’s that changes in medicine don’t happen overnight.

However, whilst the new guidelines acknowledge the fact that patients and doctors are being let down badly by the current test they failed to address the second problem that was highlighted by the original Strategic Plan – that there are serious problems with the way in which patients are treated.  Instead of acknowledging this problem (and we made sure that this was a major subject of discussion during the May 2012 meeting) the new guidelines simply refer the matter to the British National Formulary for them to deal with.  And so whilst the new guidelines dealt with, or at least acknowledged that there are serious issues with the current test to determine B12 status, the second of our problems was not dealt with at all other than acknowledging that any neurological involvement should be treated by an injection every other day (something that was already in the BNF guidelines) but added that the writing group of the guidelines couldn’t see any reason this should continue after three weeks.  This is annoying because, more than anything else, it was a recommendation or suggestion that was, as far as I can determine, not based on any scientific basis – it’s more an opinion than a hard scientifically based judgement.

And so we still have the problem that the current treatment regimen in the UK for treating Pernicious Anaemia is nothing short of a farce and remains the single most common cause of complaint to the society.

Let’s take a look at events in the past week.  On Wednesday (today is Friday) I received an email from a member who is in her fourth month of pregnancy.  The email was not hysterical in nature but calmly enquired whether it was normal for patients who were pregnant to have their replacement therapy injection of B12 stopped “in case too much would harm the baby”.  This is not the first time we have heard of this by a long shot but what struck me as odd about this request was the casual nature of the question.  It was as if the writer had found the fact that her injections had been stopped a trifle odd and it had obviously been niggling her.  And so she took the step of seeking assurance from the society that her doctor was in order and that she should stop worrying.  We responded immediately telling her that her injections should never be stopped (as per the new guidelines) and that there was no danger of overdosing on B12 and that if anything she would need adequate levels to ensure the baby was not born deficient.  She was told all this and a copy of the leaflet on Pregnancy and PA was attached.  It was just another ordinary request for information from a patient whose health and that of her new baby were at serious risk of being compromised because of the confusion among some medical professionals about vitamin B12.  I wonder what the atmosphere was like at her next visit to her doctor?

This was not an isolated incidence, some of the horror stories that we here in the society’s office on a daily basis make this request seem almost routine, but I mention it because it happened at the same time as another incident that proves the need for a serious overhaul of the current treatment of Pernicious Anaemia.

In the north of England there’s a GP who, for many years, has treated all manner of symptoms with regular doses of vitamin B12.  He is adored by his patients, admired by his colleagues who are often truly amazed at the outcome of his treatments and he is very unpopular with his local Primary Care Trust who are deeply suspicious of his liberal prescribing of a harmless vitamin, and the Medical Practitioners Tribunal Service (part of the General Medical Council) have, through the Interim Order Panel recently renewed  an order that restricts the doctor from prescribing B12 for anything other than Pernicious Anaemia.  The doctor hasn’t done anyone any harm, has offended nobody and delighted thousands.  And so why is the GMC taking this action?  It’s simple – the scientific evidence on the benefits of B12 in treating all manner of other conditions is simply not there.  Just as the society only had anecdotal evidence from the online forum that there was serious issues with the diagnosing of PA so too the doctor only has his case histories of the benefits he has brought to patients with a wide range of problems.  Yes, there is some, and I mean some science as to what B12 does, and certainly the doctor is not alone in the medical profession who has discovered the incredible benefits that B12 can give to people, but that science is very small compared to other investigations carried out in laboratories.  His case studies are well recorded and read like a book of miracles, but until the science is there to explain the benefits of B12 people like him will always be on the defensive.

Blossom was a cow whose hide hangs on the wall of the St George’s Medical School Library (now in Tooting south London).  And you may be wondering why the hide of a dead cow should adorn the walls of a medical school library.  Well, she played an important tole in the development of medicine.  Edward Lister was a family doctor who had become aware of the fact that milkmaids who had caught cowpox were usually immune from the much nastier smallpox.  At this time (the 1790s) it was said that 60% of the population caught smallpox and that 20% died of it.  Small pox was a nasty and often deadly disease.  Jenner made the connection between the immunity of milkmaids to smallpox – and following the advice of his teacher – “don’t think, act” – Jenner scraped pus from the cowpox blisters of Sarah Nelmes a milkmaid who has spent many an intimate hour with Blossom the cow.  He then inoculated James Phipps, an eight year old son of his gardener in both his arms.  The boy became mildly ill but did not go on to develop smallpox – he was immune.  Now, why am I telling you this?  Because the science behind the experiment was not known.  There was no scientific hypothesis or explanation – it was just well known that milkmaids caught cowpox but didn’t go on to develop the much more serious smallpox.  Jenner didn’t have the scientific background to justify the experiment, all he did was find out if the old wives’ tale that milkmaids were immune to smallpox was true – and it was.  Of course, it could have all gone tragically wrong and a certain gardener could have found himself with one less mouth to feed and medicine has moved on a long way from the time when doctors could carry out such experiments that are based on no more than hearsay and a hunch and that is why doctors who use B12 so liberally are viewed at best as curiosities and at worse as quacks, but there’s a whole world of difference between injecting boys  with pus from blisters and using an incredibly safe and cheap vitamin – nobody has ever reported that any treatment involving B12 has caused any harm, at least as far as I’m aware.  The science isn’t there but it works and if they neglected to provide patients with this harmless vitamin then surely they could be seen as guilty of failing in their calling to ease and prevent patients’ suffering.  Of course the real heroine of all this is Blossom – a bovine whose contribution to the development of Immunology is thankfully recorded on the wall of a library.

So, this week we have had a pregnant woman whose life-saving injections have been stopped and a GP being told he can’t prescribe any more B12 – there’s something sadly and badly wrong with the way vitamin B12 is provided.  It’s a mess!

Tomorrow I will explain how the society is going about changing how we are treated for the better – a treatment regimen based on the needs of the individual who is offered a choice of how he or she receives that treatment.