Why Pernicious Anaemia is still Pernicious.

Take a look at this link: (you may have to copy it to a new tab)

Hydroxocobalamin

http://www.wolframalpha.com/input/?i=pernicious+anaemia+united+kingdom

Now I’m not sure how accurate those figures are, but even if they are only half accurate, no, let’s go further, if they are only 25% accurate it still means that, worldwide, around 30,000 people die each year from a disease that is, supposedly, easily diagnosed and treated.  If we apply the 25% accurate rule to the U.K. around 80 people lose their lives every year to the same easily diagnosed and treated disease.  These figures are in themselves a disgrace yet go only a little way to exposing the true horror of the end result of a mistaken diagnosis and lack of treatment.  Can you imagine what that death would have been like?  Years and years of unnecessary suffering before, most probably, a heart attack finally causes death with the patient’s heart not being able to cope with the burden of frantically pumping blood in an effort to deliver rare or non-existent oxygen to where it is desperately needed.  Can you imagine the constant confusion and inability to concentrate on anything but the most basic tasks – the fight to find the right words, the doctor telling the family that the patient’s blood is fine and that it might be that the sick person is imagining it all?  It would be a long drawn out death after years of suffering – needlessly.

When I first started a service that would provide newly diagnosed patients with a simple, easy to understand explanation of their condition, I never imagined that I would be embarking on a journey that would uncover serious shortcomings in the way in which Pernicious Anaemia is diagnosed and treated.  When the first online forum went live, the first sign-up was a lady from the U.S.A. who, like me, had developed neurological damage because she had been undiagnosed for so long.  I thought, at the time, that this was a quite amazing coincidence that the first sign-up had undergone a similar experience in getting diagnosed as I had.  My suspicions were raised when the next two sign-ups also had been through a lengthy process before being diagnosed although neither had been undiagnosed long enough to have developed neurological problems as well.

Over the years the remit of the society has changed dramatically.  When I was eventually diagnosed as having Sub-Acute Combined Degeneration of the Cord Secondary to Pernicious Anaemia I remember asking the doctor to write down what I had.  I knew that the word ‘Pernicious’ was not a pleasant adjective but when I looked it up in a dictionary at home, I was a little startled to read that it meant ‘Ruinous, Destructive, Fatal’. I was assured by the GP at a future visit (one of many until I received treatment that suited me and not a textbook) that the disease used to be fatal, but could now be easily treated.  Note the word treated and not cured.  I remember trying to find out more about the condition and so I trawled the Internet (no easy explanation there), consulted medical dictionaries (either far too vague or incredibly complicated) and asked anyone who might know about the disease including Biology Lecturers in the college I was teaching at – very superficial explanations there.  And so my research proved futile and, when I had to take early retirement, I decided to dedicate some of my, what had become considerable free time to providing other sufferers with an easy to understand explanation.  I still have the original down-loadable information leaflet which is basic but easy to understand.  It was written at a time when I was still unaware of the enormity of the problems with the diagnosis and treatment of the condition.

The forum was proving to be incredibly popular and demonstrated quite clearly that there were serious issues relating to the Diagnosis and Treatment of the condition was now unquestionable – and it was a world-wide phenomena.  When visitor numbers to the forum, and the content of the forum postings  pointed to the need for a more robust and substantial society that could act as the voice of sufferers of Pernicious Anaemia I decided to form a society that would be a bona fide charity.    To do this I needed volunteers who would become Trustees of the society and so I posted a request that anyone who would be interested in taking the society forward to contact me.  Six members of the forum volunteered and we had our first meeting in Birmingham in early 2006.  This was the first time that I had spoken in person to other sufferers of PA and it was such a relief to know that what I had and was experiencing other people had and were going through the same problems.  By August 2006 the Pernicious Anaemia Society had been entered on the register of the UK’s Charity Commission with the registration number 1115195.

The remit of the new charity was quite simply to articulate the problems with the diagnosis and treatment of Pernicious Anaemia to the relevant medical and political authorities.  The charity’s remit had now changed from simply providing an easy to understand explanation of the illness to fellow sufferers to informing those who were able to bring about change about the problems associated with the condition.  By now I was fully confident that the decades of misdiagnosis and inadequate treatment would soon be ended as all that needed to be done was to bring these problems to the attention of medical professionals and politicians responsible for health.  The idea was that once the way in which Pernicious Anaemia was diagnosed and treated was changed in the UK, that would have a domino effect in all the other countries where the society had members.  I was convinced that, now we were a charity, those responsible for health-care in the U.K. would listen to our concerns and act immediately to rectify the situation.  With hindsight I was hopelessly naive.

Last year (2009) the society concentrated on lobbying politicians to commission a review of the way in which Pernicious Anaemia is diagnosed and treated.  We had moderate success in collecting 88 signatures to an Early Day Motion that was tabled in the House of Commons.  88 signatures was quite an achievement but it all came to nothing.  Madeleine Moon M.P. (the M.P. for Bridgend where the society is based) secured an adjournment debate where the only other person in the chamber was Ann Keen, the minister for health.  The reply from the minister was obviously written by a civil servant as were the replies that I received in response to letters written to Ann Keen and the then Secretary of State for Health.  It then dawned on me that even if the Minister asked for advice on this matter then the medically trained civil servants responsible for advising ministers were genuinely unaware that there are serious problems with the way in which Pernicious Anaemia is diagnosed and treated.  This year I have concentrated on compiling evidence to support the society’s claims.  This evidence is in the form of a documentary and survey.  The results of both the documentary and the survey provide hard evidence that there are problems and are quite truly remarkable.

People still die from Pernicious Anaemia – nearly sixty years after B12 was made available as a treatment (though not a cure) for Pernicious Anaemia.   It was reported in the New York Times a few years back that a lady who had been a key member of the New York  Opera wardrobe department (she was in charge of wigs) had died at her home in Scotland where she had returned to retire.  I wrote to the Minister for Health for Scotland asking for more information.  I received a reply that she couldn’t provide me with any more information “owing to the Freedom of Information Act”.

Ends