Last week I had an extremely interesting meeting with one of our members who is a Pharmacist and has offered to help us in any way that she can. She has been digging around and has found that when Hydroxocobalamin was first licensed for use in the UK the dosing instructions were much more flexible than stated by the British National Formulary – and note I say flexible and not more frequent. Anyway I told her of my meeting over a year ago with the editor of the BNF who had told me that if I can provide evidence that some doctors are prescribing more frequent injections than stated in the book then she would consider re-wording the instructions.
And so that’s why we are going to conduct another survey of our members that will ask if their GP or other medical professional prescribes more frequent injections than one every three months. There are a number of problems that will have to be tackled. Firstly members will need to be reassured that they and their doctor will remain anonymous and this is because patients whose doctor departs from the guidelines are very keen that he or she won’t get into any sort of trouble. Secondly there is the issue of only collecting data from patients who are prescribed more frequent injections. Because self-treatment with B12 bought from all manner of places is now so widespread we have to ensure that we collect information from prescribed treatment only.
The idea of all of this is to put before the BNF a reasonable and evidence based case for a thorough revision of the guidelines set out in the little book. And it is only be putting a reasoned and evidence based case will we stand a chance of getting the guidelines changed. I’m sure that between us we can assemble a dossier of evidence by the summer. Please watch out for the new survey on the website.