I had an exceptionally useful meeting yesterday in the upper House with the Countess Mar. Lady Margaret was fully up to date on the problems that we face in getting diagnosed and treated. The outcome of the meeting means that she will be asking Her Majesty’s Government (HMG) what it is doing to address the problems with the way in which Pernicious Anaemia is diagnosed, after all, the new Guidelines on Cobalamin and Folate issued by the British Committee for Standards in Haematology are nothing short of an admission that the current test to evaluate patients’ B12 is seriously flawed and the test to ascertain whether the deficiency is caused by an inability to absorb B12 from food is similarly not fit for purpose.
Things are starting to slip into place now though it has been a tortuously slow process and it might be an idea to recap on the series of events that have led to where we are now.
Back in 2011 we produced our documentary ‘Living with the Fog’. It was at a public screening of the documentary in early 2012 that the then Minister for State for Health (Long Term Conditions) Paul Burstow MP took questions from his constituents attending the screening and promised that he would arrange a meeting between the society and the Dept of Health.
That meeting took place in May 2012 – the meeting was scheduled to last twenty minutes but lasted over an hour and a half.
Following that meeting where we highlighted the problems our members faced in getting diagnosed the new Guidelines on Cobalamin and Folate were commissioned and these were published in early 2014. The Guidelines’ summary points pointed out that the current tests were not to be relied on and that physicians should treat the patients who they may suspect as having B12 Deficiency because of the danger of delayed treatment leading to severe and irreversible nerve damage. The Guidelines were well thought out and addressed all of the issues with the current tests and the potential new tests being developed. However, the authors stayed well away from the problems with many of our members not receiving adequate treatment according to their needs referring the matter to the British National Formulary.
Also in early 2014 the results of our members’ survey was published in the British Journal of Nursing which provided statistical evidence for the first time of the problems faced by patients in getting diagnosed and treated. I’m pleased to say that over thirty other papers written by clinical researchers have now quoted from our paper – so in that respect it’s doing what it was intended to do.
Now we have that evidence interested parties can now ask legitimate and relevant questions to health decision makers which is what will be happening in the near future.
The big question remains just what will the government do to remedy these problems? And that is where we, as a legitimate patient support group will present our case if, and it’s a big if, if we are asked to do so. We’ve got the evidence that the current tests are useless and, just as importantly we now have the evidence from our paper of just how these failings are impacting on one particular patient group. And these are two decent pieces of evidence, not just anecdotes that do not qualify as evidence; and it’s taken a long time to get these but believe me, to quote England Dan and John Ford Coley “if there was an easy way I would have found it”.
So we are now on what could be the final stage of getting our problems recognised and addressed but this, like our other journeys will, I suspect, be another long one. Fingers Crossed.