Another story request from anyone living in the UK regarding self-monitoring

I am looking to speak to anyone who lives in the UK and falls under either of these categories:

1. Uses a home self-monitor device to measure their INR

2. Wants to self-monitor but has been told they can't

Please email me with your contact details: raj@afa.og.uk

Many thanks

Raj

AF Association

19 Replies

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  • I would love to self-monitor but have never been advised that this is an option.

  • No health professional tells you it's an option in my experience. I bought my own monitor and took it to the hospital monitoring me. They were then happy to teach me how to usr it and I then had to go to my own doctor to request strips on prescription. I now phone in my results to the clinic. I would actually be quite happy to visit the clinic in person but I want my monitor so that I feel in control.I test myself once a week and feel happy as I know am almost always in therapeutic range. Knowing this gives me confidence. However we are all different and I know some people who would rather go to clinic.

  • I self monitor but also am monitored by hospital approx every 8 weeks. I do tests approx weekly - more if high/low. I got prescription for strips but had to argue the case. Marie

  • G'day PhyllisK

    I've just written a commentary on this and although it is long winded it reflects some situations that can arise..... hope this group accept it .... here goes

    Just a few words about my experiences with Warfarin INR testing.

    Was put on Warfarin in early January 2010. I'm one of the lucky ones - took to it like a duck to water. No problems.

    At the time I lived in Surrey and after the initial problems adjusting to this intrusion in my body I settled into an INR testing process. The GP's practice nurses were all supplied with and trained in the use of a Roche Coaguchek XS handheld testing device. The process was quick and simple - using the supplied lance to prick the finger a drop of blood was dropped onto a testing strip and ......... Bingo ! A reading pops up on the screen of the device. This reading is then fed into a GP practice computer with Coaguchek software on board by the practice nurse and within seconds a result is given, along with the next test date and the next doseage. This process also required a Q & A session - have I missed any doses - if I had the details were also factored in, in addition to the device reading.

    Simples !

    At the time I was a bus driver working quite a variety of shifts so getting to surgery for a blood test was becoming more and more difficult. I decided to invest in exactly the same device as my GP's practice used. The team in the surgery were incredibly supportive even down to checking the accuracy of my device (compared to theirs) every 6 months. Once I had my own device I took my own reading on the prescribed test date, phoned it through to the surgery reception gave the reading and details if I'd missed doses and within 4 hours I'd have the results phoned back along with the new test date. This gave me total freedom in my life, no more racing the clock to surgery for INR tests and then back to restart my driving shift, no more worrying on my trips to Australia - take the device with me and if a test fell due whilst away just phone the results to the surgery and then phone them back 4 hours or so later for the results. Life was almost normal. Freedom !!

    Then I moved to Cornwall and things then became instantly much, much more complicated.

    The local GP's practice did things a different way - they drew blood from the arm, this was done ONLY on a Thursday morning, sent to a laboratory and the results came back in hard copy the next day between 11 am and 1 pm - 24 HOURS !! When blood was drawn no questions of any sort were asked. As I had no experience with the new Cornish GP's practice I decided to cross check all the blood letting with my Coaguchek device. There was quite a variation between my blood dropped onto the Coaguchek device and their drawing blood by needle from the arm. I then read on this website forum (from a post) that in Portugal they use the Coaguchek device but take the second drop of blood. I experimented with this and found that the difference between the two techniques was consistently + or - 0.1

    All went relatively well until December 2012 when - coincidently - I had a GP appointment (not on a cardiac related matter) and picked up my INR test result at the

    same time. I was cross checking what the surgery were doing and I knew I had a reading around 1.7 from the Coaguchek device. So I was aware that I could expect a variation in doseage to get me up to my target INR of 2.5. Lo and behold - my doseage hadn't changed. My GP - intent on keeping to his 10 minute time slot got up and showed me the door. I got up and walked over to him and said 'Oi - I haven't finished yet with you' ! Waving my INR test sheet I explained my issue - he then sat down and when he'd finished reading his jaw dropped.

    Must say he moved very quickly and he phoned me that evening full of apologies and verbally gave me the new dose - the hardcopy of which I collected from surgery next day. So, here we are - 9 months down the track and I have another INR test reading variation.

    My Coaguchek device tells me my INR is 3.1 - I went and had my blood letting from the arm done and the result came back at 3.0 - ONCE AGAIN, AS WITH DECEMBER - no variation in my doseage only a drop in the number of days to the next test (70 days down to 30 days).

    This time I wrote a letter of complaint to my GP. Within 24 hours I had a phone call from the surgery telling me of my new doseage - and predictably a drop in my doseage. No apologies though !

    Am I impressed - no I bloody well am not. Fortunately I'm on top of things and very much control my life. I guess it will happen again, next time though I shall go through the formal complaint process with my local NHS Trust.

    One thing though - with this blood letting from the arm - who decides on the next test date and next doseage - the laboratory who do the blood analysis or the GP's surgery ?? Anybody know ??

    Sorry this is so long winded but thought you might find it interesting.

    Cheers

    Aussie John

  • Hi I have my blood taken in my local hospital. I get the results from them by email about 3/ 4 hrs later and with any dose changes and next date to have blood taken. I also get a letter the next day without fail.

    Lynne

  • Very interesting indeed. I have come to the conclusion that you have to be 100 percent in control of your own health to fully access the national health service and then and only then ...it's great. NOT GREAT WHEN YOU ARE OLD OR DISTRESSED. All you want then is for someone else to take control and make you feel protected.

  • I'm not on warfarin but I know our surgery does strip tests, every week, the nurse does them...

  • Would love to self monitor but my GP told me I would have to buy my own testing strips, which I think is a swiz as I will be saving practice nurse time etc. I would much prefer to be in charge of my own health and will probably give in and buy a coaguchek machine soon.

  • Hi lizzily,

    Yeah, I know what you mean - in Surrey my GP practice wrote prescriptions - no problems at - quite a 21st century practice. Here in Cornwall its like doing a timeslip into neolithic times !! There will come a time of course when I will have to get new test strips and I'll ask for them on prescription then the mud will hit the fan. Hopefully by then the practice will have made another mistake and I'll be taking it up with my local NHS Trust. Mind you though, the coaguchek system is so good I would buy my own.

  • Izzily

    Check with your local Health Authority, the strips should be available on prescriprion. I was told this to start with but a question to my Authority resolved the problem.

  • Thanks for that. Will have to find out who to contact as I have lost the plot with all the recent changes!

  • I live in Surrey too - but have to go to local surgery for blood sample to be taken. Actually, I'm quite happy with this. Any problems or missed doses etc., are added to the blue form and the whole lot sent to the General Hospital Cardio dept where I was originally diagnosed and treated. Results are in my hand within two days and any notification made clear, plus next test date. I feel well looked after and free of hassle.

  • Monitoring. I use a home monitor and find it much better than having to wait to have my inr checked in either surgery or clinic. my email is enidjones11@gmail.com if you wish to communicate further.

  • Hi Raj,

    I was diagnosed with AF around 1998/99 but was not started on anticoagulant treatment at that time. It was only following a TIA in November 2000 that the warfarin treatment was started. At that time it was visits to the anticoag clinic at the hospital that serves our area, initially every week and eventually about every 4 weeks once my INR was stabilised. On a few occasions the technician doing the INR checks would be late and then we would have to wait for her machine to warm-up. Although I usually had a 9 o'clock appointment, on the occasions that she was late they would take all the patients who had come by patient transport first with the result it could be a couple of hours later before I was taken. Since I was still working I complained and told them my time was as valuable as theirs. I was servicing laboratory equipment at the time, some of which was hospital based and it was important that I was not delayed. They then told me there was an early morning clinic on a Thursday and Friday morning that I then started attending.

    On one occasion my INR was up at 11, following an antibiotic, and this involved an overnight stay in hospital to get it back down. At this point, one of my sisters who was a nurse, showed me an article in one of her nursing magazines about the Coaguchek. I did nothing about it at that time. On another occasion I was working in Newcastle and was due an INR check, (I live in Central Scotland), and had arranged with the hospital near to where I was working to have my INR checked. On this occasion it was up at 10 and was told I would need to come in to have VitK injection to get it down. I arranged for a taxi to take me in that afternoon and sat in A&E until 11pmand nothing was done. I was then told at 11pm that I could go home. Not very easy when you are in a strange place with no transport and about 5 miles from the factory where I had left my car. That decided me that it was time I had my own Coaguchek.

    I 'phoned Roche Diagnostics the next day and ordered the Coaguchek. Yes, it was £399, but for me it has been worth every penny. I have since replaced it with the Coagucheck XS. (another £399). A couple of years ago at the AFA Patients day I ordered the printer for it so I can now print out all my results for just over a year.

    I had absolutely no problem getting my anticoag clinic to accept it and just had to 'phone in my results about every 6 weeks. Since I was travelling around a lot, both at home and overseas, it has given me more freedom to do that.

    However the Greater Glasgow Anticoag Service, that I came under, changed about 7 or 8 months ago. At first things were fine with the only change being that I had to 'phone in my INR every week.. That soon changed. I had started another course of antibiotic on a Friday and was checking my INR dailly since the pharmacist had warned me that it could interfere with my INR. My INR was indeed elevated and since it was at the weekend I reduced my warfarin accordingly and rechecked each day. . When I reported this to the anticoag service on Monday they were not at all pleased and said I should not check it every day. I told that during admissions to hospital it was checked every day. They also said that I should not be altering the dose myself. I asked them if they preferred my INR to go "sky-high" instead. I also told them that I was following the NHS guidlines for oral anticoagulation. The outcome of all that is that I now self manage my warfarin, checking my INR every week, and now have no contact with the anticoag service. I have an annual appointment at the Heamatology department just to check my readings.

    Initially I had to buy the test strips but they are now supplied on prescription in Scotland, no questions asked. The only thing I still don't get are the lancets but my son is diabetic and I just get some of his.

    I would certainly recommend the Coaguchek XS and self testing. The current test strips have in-built calibration check so you can be confidents that the reading is correct. I had one check carried out by our local GP clinic but tha was about 0.5 lower than mine. I.e.the Coaguchek said 2.5 they said 2.0. I didn't believe them since there were too many variables involved. Did they use the correct phial to put the veous sample in? The hospital lab is around 15 miles away. What happened when the sample got there?. All other cross-checks carried out at the hospital agreed withj my Coaguchek +/- 0.1, well within statistical variation.

    I accept that self-testing is not for everyone but if you feel confident to do it then insist on it. It is within NHS guidelines to suggest self testing to those who are capable of doing it.Self management, that I do, is not normally recommended. I have had many years of working with laboratory equipment and am quite used to very fine adjustments to equipment calibration. "Tweaking" my warfarin dose to keep with my target of 2.0 to 3.0 is a very similar technique.

    I have gone on a bit but hope it all helps both yourself and others on the site.

    Walter.

  • I am experiencing a similar problem at present. I test once a week and if I have a high or low reading I ring clinic but all they say is that I shouldn't test between the dates they give me which is once every 8 weeks by which time the reading could be sky high!

    !

  • Hi Dedeottie, That's what happened with me the couple of times I ended up in hospital with INR sky high. I just told them "it's my life and my body". I believe that's also quoted on the AFA website. I think sometimes the the folks running the anticoag clinics have "blinkers on" and can only follow their set rules that are'nt always best practise. (only my opinion) Walter.

  • Hi Walter. Thanks for your comment. It actually really helps to know others have had the same problems. I don't know why medics are so cautious with adults being in control of their own warfarin when they are happy for 10 year old diabetics to work out how much insulin they need to give themselves ! I feel I have moaned a lot lately but letting off steam on here helps me to laugh at myself. X

  • I've never been offered self checking.

    The hospital checks the level but it is my GP who advises the warfarin dose and date of next test. Takes 1 or 2 days for result from GP by phone.

    He doesn't think it necessary to check after a change of medication - say antibiotics - and as I am on 10/12 week testing it concerns me.

    I once rang the anticoag clinic at the hospital who said they couldn't advise me because my surgery did the dose., but off the record, the receptionist said that they would check after a change in medication.

    With no additional testing self checking would be helpful.

    Marion

  • Hi all,

    Have received some strange news, this may effect others.

    As briefly as I can here is my recent experience,

    2 years ago I started self monitoring using a Coaguchek XS system, the local surgery accepted the use of the monitor and if I registered with WEQAS ( cost £120 per year ) would get strips on prescription. I didn't get around to registering with WEQAS as I only tested every 2/3 weeks which made it cheaper to buy my own strips.

    In November I was told by the warfarin clinic nurse that I must register with WEQAS or I would not be allowed to use my monitor any longer. Calibration being the reason given.

    So, I wrote to WEQAS asking how I might register and was informed that they do not register individual home testers, only clinics, surgery's etc. They then contacted Taunton NHS who I believe contacted my local surgery, in Somerset.

    Last week I went in for an INR test and was informed of new Somerset Health Policy,

    NO MORE SELF MONITORING, insurance and litigation being the reason. I was threatened with the Warfarin prescription being withdrawn if I did not comply. The Doctor in charge of the Warfarin clinic was most emphatic that this was new policy from Somerset Health Authority, and explained that there has been a rethink of self monitoring and it was no longer to be allowed.

    Even if this is only in Somerset, many people must be effected. Roche have sold half a million of these monitors, many to people in the UK. Roche still sell these monitors and when buying test strips from them one is asked if one is aware that they are available on prescription? Advertising standards come into question.

    I just can't believe that what I have been told is correct, and would love to know what the policy really is.

    Seasons Greetings

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