Changes to warfarin self-management by my GP surgery - any similar experiences?

[BlissC]

After two DVTs in 2005 and 2007 and a PE in 2007 I was diagnosed with Factor V Leiden thrombophilia and put on lifelong warfarin. In 2009, after seeing an Anticoagulation Europe campaign for self-testing, and convincing my GP to support me, I began self-testing using a Coaguchek XS INR monitor.

In 2011 following a change in GP I began self managing. Since beginning self management I've had no further blood clots and no significant bleeding, and though my INR can vary at times (often due to other medication I'm taking), I know what to do if my INR goes below or above my therapeutic range (2.0-3.0) and usually get it quickly back in range. I'd let the surgery have my results/dosages every 4-6 months, and every 6 months take in my INR monitor to check the readings on my monitor against the surgery's monitor.

Towards the end of last year the practice nurse announced that they had a new form that had to be completed formalising the arrangements for me self managing. I was assured that nothing fundamentally would change, but I would need to test on Tuesdays or Wednesdays, which are the days the two practice nurses are in the surgery in case I need advice about my dosage. I have always been able to contact a GP for advice if a practice nurse wasn't around, and out of hours I have an emergency number from the local hospital's haematology department, or A&E if I can't contact anyone else. In the 7 years I've self-managed I've never had to contact a doctor out of hours for advice.

Last year, after routine blood tests showed I was severely anaemic I found I was having difficulty keeping my INR in range, and my INR was often below the therapeutic range, which was hardly surprising as my blood test results for iron and folates were all over the place. My GP suggested that I might want to "work with the practice nurses" to get my INR stabilised better, but left the decision to me. I agreed, which I now regret, because as soon as my iron and folate levels went back to normal while I was taking iron and folic acid tablets, my INR settled down.

I'm now off the iron and folic acid, and everything's stable, and after 6 months of "working with the practice nurse", which was essentially going back to self-testing, a couple of weeks ago I told my GP I thought I was okay to go back to self managing, and she said she'd speak to the practice nurse about it. I was due to take my monitor in for checking against the surgery's monitor, so made an appointment to see the practice nurse.

The surgery has recently merged with two other practices, and also has new INR monitor software. The upshot of the appointment with the practice nurse was that because the new software repeatedly warns them if a patient's INR result is overdue and because "they" won't be happy if the system's indicating a patient's INR result is overdue (I'm not sure who "they" are - I can only assume that it's the other practices) that I can continue to self manage, but I'm suppose to test only on Tuesdays and Wednesdays when the practice nurse tells me to, and that I ring in with my results that day and that the practice nurse will ring me back to confirm the dosage of warfarin I should take!

To my mind, that is not self managing! Tuesdays/Wednesdays aren't always convenient days for me to test my INR, and aren't convenient for me to phone the surgery and wait for a call back, particularly when I'm at work. I suggested I could let them have my results more frequently than 4-6 months, but was told I need to ring in my result every time. I have a number of long term conditions and to a large extent I'm ruled by appointments and doctors, and managing my own warfarin dosage is one of the few things health-related that I have any control over. I pointed this out to my GP when I saw her yesterday, as well as the fact that I've been quite happily managing my own warfain for the last 7 years with no serious problems, and she said she'd speak to the practice nurse about it, but that she was sure that the changes were just to ensure patient safety. The practice nurse now seems to be managing everything to do with anticoagulants, and has never seemed too happy about me self managing, and I feel that the changes with the merger and software the surgery are just an excuse to stop me self managing.

Questions

- has anyone else had any experience with GP surgeries changing their policies on self-testing/self-managing?

- does anyone have, or know of, a warfarin self-testing/self-management protocol they're willing to share? I'm trying to find examples of protocols in use elsewhere to try and persuade them that other places aren't so prescriptive about testing etc.

- has anyone had a similar experience where following successfully self-managing their GP surgery/anticoagulation clinic have changed their policy/procedure regarding self-management but have successfully fought changes?

Many thanks,

BlissC

[daisyd]

Hi I self test as I have sticky blood ( maybe worth you looking that web site, my INR has to be between 3-4 because of it.

I self test weekly and in fact more often if I feel unwell as the sticky blood effects my memory I can usually tell

I was fed up of hanging on the phone to give my result to the anticoagulant clinic so I started to email it and after several years suggested what Warfarin I thought I should take, occasionally they told me to take a different dose, although I am usually right as I know what I have eaten, drunk etc

A few months ago I got a letter from the clinic asking me if I was happy to receive the dosing from the clinic via email along with others found this a really good way

Saving time etc local hospital

I go to the Hospital at London, St Thomas’s every six months who are experts in Sticky blood and are really happy infact prefere their patients to self test, as it has been shown that this is a better way to keep patients in range

I also have a low iron count and take iron medication x 3 timed a week as this in the latest research has been the best way to absorb it

along with folic acid makes me feel a bit better,

Because my memory is so bad I can’t remem the name of the other site you can go on to look up about sticky blood but if you look u professor Hughes anti phospholipid syndrome you will find out more

Sorry hope you understand what I have written

Good luck

[BlissC in reply to daisyd]

Hi daisy, and thanks for your reply.

"I was fed up of hanging on the phone to give my result to the anticoagulant clinic so I started to email it and after several years suggested what Warfarin I thought I should take, occasionally they told me to take a different dose, although I am usually right as I know what I have eaten, drunk etc"

That was how I first started self-managing. I mentioned to my GP that when I tested my INR at work (which my employer no longer allows me to do due to a spurious health and safety "risk") that I used to have a bit of a competition with my colleagues to guess what dosage the surgery would say. I always 'won' as even back then I'd figured out how the dosing works, and like you I know what I've eaten, drunk, etc. and know what effects my other medication have on my INR levels. My GP asked if I'd like to self-manage, and we took it from there.

The frustrating thing is that as the GP I saw this week said, they know I'm not a patient who needs things explaining repeatedly, and I have a fairly detailed understanding of all the conditions I have. On occasions I've even been known to teach my GP a thing or two about my conditions (I have a couple of rare conditions that GPs don't often see, so any information or research I find out about the conditions, I pass onto my GP). If someone tells me I have something, I go off and research it. I'm a researcher by trade, so it's second nature to me.

I just find it so frustrating that after 7 years of self-managing my own warfarin with no problems (and even if there is a problem, I know where to get advice from), suddenly the practice nurse seems to have moved the goal posts!

Kind regards,

BlissC