March 2nd 2012. Fed Up.

I finally got totally fed up with having to go to the pharmacy for tests and decided to write some strong letters to the pharmacy, the GP, my cardiologist and the head of clinical services.  I'm taking exception with the fact they ignore my own results and then make incorrect dosing decisions based on a single snapshot test.

Here's my letter:


Dear Dr. XXXX,

I wanted to write this letter to let you know my situation, and intentions in regard to my Anticoagulant therapy.

I have in fact been self-testing and self-dosing for coming up to a year.  I adjust my own dose regularly to take into account lifestyle changes, and I do not inform the pharmacy of these changes. I have bi-daily records of tests and daily doses for every single day since therapy started, and statistics that show a very successful INR in-target for this time. I have carefully researched Warfarin management across the world, and across the UK, and believe that my Warfarin is managed better than could ever be achieved through spot checking.  I am part of the Oxford University CASM Anti-coagulant self-monitoring study group, and take an active part in discussions with other Warfarin self-testers across the world through the internet.  I note that the original concept of bi-daily testing and self-management came from my Heart Surgeon who I quite literally trusted with my life and will follow his advice to self manage Warfarin.

My intention is to officially be recognised as self-managing my Warfarin, something that is happening across the UK and already yielding fantastic results.  I have a friend in Wales who does this, and another in Essex - I attach the NHS Policy from the Essex area which I would be delighted to follow.  I am looking to visit a health professional for testing no more than every 6 months.  Note that whether officially recognised as self-managing or not, I will continue to do so regardless, but I believe it is in every ones interest for honesty and openness and working together for the best results.

I recently missed several appointments and was chased up as if my life were in danger, with no recognition that I self test - and then my Warfarin was withheld unless I took a test.  I question the legality of this, as withholding the drug from me puts my life in jeopardy.  I now have 2 months supply of tests and Warfarin and hope that I can resolve the situation in this time, as I have no intention of attending any further appointments.

As an active 33 year old on Warfarin for the rest of my life it is critically important to me to resolve this situation and free me from the constant chore of visiting the pharmacy for tests that serve no practical purpose other than to follow a published policy.  It is causing me considerable stress and causing problems with my working hours.  My intent is to officially establish my position of a warfarin self manager, and I am now embarking on a letter campaign to make this become a reality.

I have also written a very similar letter to XXXX at XXXX (Pharnacy) and Dr.XXXX  (Medical Director of the NHS Trust, and my Cardiologist).

Kind Regards,
-Carl.