Continued Fight To Self Test

In my continuing fight to be allowed to Self Test my INR (I have been taking warfarin for 20 years), my local health authority have agreed self testing should be available to patients deemed 'suitable' by the consultant.

My GP is now beginning to relent but is now insisting they will not accept a telephone call from me to tell them my INR as it could be mis-heard and will not accept me emailing the result as I could mis-key it. I have found that Coagucheck do a special download device, but cannot find it for sale in UK. So.....how does everybody else pass the information to their GP - at the minute it seems I would be able to do my own test then take the machine to the surgery for them to read .......totally missing the point....I want my life back!!!

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  • Dear Rainey999. Well you are making progress so be encouraged. It is now accepted that self-managing your anticoagulation brings the greatest clinical and lifestyle benefits. i.e. Do your own INR test and then decide yourself what dose of Warfarin to take until the next test. I have done this for 15 years without problem. After 20 years on Warfarin I guess that you already know how your INR varies with Warfarin dose but your doctor will reasonably want to gather some evidence that you are competent. Nowadays I judt get on and do it and every 12 months carry out a test at the surgery followed by another test on their machine to prove good correlation. At the beginning I did a deal with my doctor that I would spend 6 months being tested by him but before each test carry out my own check and tell him the result to give him confidence in me. That worked.

    If you are using the CoaguCheck XS then Roche can supply a small, infra-red reader which will copy your result directly from the machine to a PC and you can then eMail it or print the result on an official looking printout to send to the doctor. Some folk find the reader or its software a bit difficult to use. These days I use it only to be able to take a print to my dentist if having an extraction to show him my INR below 3.0.

    I know its a long road but it is worth the effort believe me. All the best and do please let us know how you get on.

  • Why do you need to tell the GP what your INR is?

    When I decided to take control of my INR nearly 10 years ago I just got on with it after a few weeks of checking back with the surgery and now vary my dose according to the INR result I get. My range has been far better than anything my GP ever managed in the previous years! I get a check INR when I am at the surgery for other routine blood tests or appointments. My INR has never been wrong yet! My current GP didn't even seem interested in my carefully prepared INR log and trend graph that I used to present to him.

    After 20 years of seeing them get it wrong sometimes (well I'm sure you know when they do) I suspect you know far better than them what dose to take. In my admittedly limited experience and from what I've read online I'm not convinced many GPs know much about anticoagulation.

  • My GP will only issue prescription for warfarin when he has seen the hospital test results. I self test but go to the hospital every two months to be tested. The reason he gave is someone died whilst under his care from a billed and it turned out had not been tested for some time.

  • I phone my results through to my 'local' hospital anti coag clinic and they are more than happy to do this.

    Eileen

  • I'm sorry I can't offer any specific help with your predicament. Simply to sympathise with you and be aghast at the arrogance and overbearing nannying of the NHS towards their patients, caused no doubt by what shapes much of NHS behaviour; that is the managers and lawyers worried about negligence litigation. With regard to you wanting your life back, it might be worth looking at the Human Rights Act and making a challenge under sections of that. Litigation being a language the NHS understand.

  • Do you think they would accept a email with attached picture of the result, (machine)or a letter from you saying that you would take complete responsibility for your result,

    What a pain.

  • I have seen the infrared devices for sale on eBay occasionally. But haven't found anyone else selling them.

    coaguchek.com/coaguchek_pat...

  • Miskey - what a load of bull**** What if the GP or Lab misreads, miskeys or mishears!!

    If you miskey it's your fault that's the point. Even if you miskey significantly I would hope you would think twice when the warfarin dose is changed massively. I don't know why this country has such a culture of blaming others and not taking responsibility for our own actions.

  • Dear rainey999

    well done for keeping up the fight. Does your GP not realise that for people who get their ~INR tested at a hospital clinic they receive a phone call later to give them their dose. Or does he think that the NHS can't make mistakes?

    By the way just type coaguchek connect into your browser and the Roche site comes up with details of it. You can buy from them.

  • Hi, I have spoken to the makers of coagucheck about the download device and this is what they emailed back to me:"

    We have temporarily withdrawn the CoaguChek XS Connect from our website, due to issues experienced by some customers with the connectivity to computers using Windows 7 or newer versions.

    The XS Connect retails at £65 and I do still have a few in stock, should you think your computer may be compatible,

    Please do let me know if I can be of any further assistance.

    Many thanks

    Sarah Taylor

    CoaguChek Careline Team

    Leader

    Burgess HillTel: +44 (0) 808 100 7666

    Hope that is helpful!!!!

  • Rainey999, I self-test and self-manage. I attend the INR clinic once every 2 months and I bring a copy of my self-test results to discuss them if necessary. I have a great relationship with my Anticoagulation nurse and I know what my dose is. i have stopped chasing the results anymore and let my INR be what it is. With 74mg/week of warfarin in my body I know that I am OK. Sometimes it goes moderately high but it is never over 5. Keep pushing hard, self-testing or self-managing is not hard and is safe and give you much greater confidence. PS I have been on Warfarin since 2007 after heart valve replacement and will be in it for life (age 45).

  • Thank you all for your encouragement. The GP is speaking to the practice owners - that was 6 weeks ago. I have pointed out that Nottinghamshire now have the coagucheck machine on their list of approved prescriptions (subject to a consultant agreeing the patient is 'able' to self test), I am more than happy to buy the machine, but asked if the test strips could be prescribed.....I await the response. I have been taking warfarin since 1993, so am well versed in dosing etc - but the GP will not countenance it, despite the latest debacle - INR was 3.9 10 days ago - they wanted another test in a week but I was visiting my daughter the other end of the country. My daughter's local GP couldn't do the test (due to Easter) so now it will be 2 weeks since the higher INR - had I had the machine......I believe at 55 (very nearly 56 years of age) that I am a 'grown up' - if I were an insulin dependant diabetic I would be testing and dosing myself - no more dangerous the warfarin ? :)

    The fight will continue :)

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