RE: Coaguchek test strips

I believe there is a great need for these test strips to be provided, this has reflected in my local Hospital in Dorset, I have found that the hospital blood taking dept. waiting area was standing room only, so I fully agree with others, it is more sensible if people can self test, after all done by hospital it means they spend 50p per time postage ant then time for taking blood and then the laboratory time, add all this and then the documentation time before posting to the patient which is also costing, obviously as patients the more we can help the better, if a person tests twice a month then surely it will only cost approximately £70 per year and certainly free a lot of laboratory time up. thus allowing the laboratory to attend to more urgent things, on my visits for blood tests I believe more than 50% of patients were for INR tests, I personally believe that it is cost effective to self test.

32 Replies

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  • Hi Eddmer and good for you. Did you know that NICE just published new guidelines recommending that patients on Warfarin should self test? They have officially calculated that this is cost effective for NHS as you say but also that particularly those who self manage are 50% less likely to have a clotting problem and 30% less likely to die from their condition than those who are tested "in the system". Hang in there and encourage others and in particular your GP, hospital and CCG. All the best.

  • Thanks for that, I worked out that if I do a cruise it will cost £50 to see the Doctor and then about the same to check so I bought the machine, but I realised that more and more patients are bogging the hospitals down and this is the only way they will survive in my opinion......cheers...Edd

  • Hi Birt, well I do believe they should provide the strips, but I feel that some people will expect to aquire the machine free, this may complicate the problem, I paid the £299 from the Coaguchek site but a little help with strips could ease the problem, many of us have paid into the system for years, on Monday will see the Consultant, we will see what he says......regards.....Edd

  • Hi eddmer and all. I was recruited to sit on the NICE committee who produced the new guidelines. It is the intention of NICE that the NHS will provide on prescription both the machines for self testing and the strips and the necessary training for all Warfarin patients who want to self monitor; initially those with A/F and prosthetic heart valves.

    These things however go in stages and the next stage is for NHS to incorporate these guidelines into their policy and then into the NHS budget plan. Only once this is done will local CCGs, GPs and hospitals have little choice but to make the change. We need to keep CCGs, GPs and hospitals aware of the changes coming and keep lobbying your carers and MPs to support the changes now needed by NHS in adopting these guidelines. All the best.

  • G'day PBirt, lizzily daisyd and others on this subject,

    I've had my Coahuchek XS device for 4 years and its as much a part of my life as my glass of wine or three (taken for medicinal reasons in the evening .... :-) ). I got it when I lived in Surrey and was 100 % supported by my GP with training being provided by the practice nurses and a thorough 'briefing' of the way the Coaguchek system operates. Excellent. You need the training and the explanation together as (in my view) the patient needs the 'total picture'. I've never had any issues.... ever !

    Until I retired and came to Cornwall .... the far side of the Tamar, closer to France than bloody London. :-) Then my problems started.

    My local practice only does the Venous Draw. However, I have been successful in persuading this practice in prescribing me the test strips. However, they will not accept the use of the Coaguchek XS device. But just recently I have had a break through - its called bullying (well, of sorts) ..... yeah - I refuse REFUSE to attend for my INR appointment for the Venous Draw .... that throws them into a quandry. I then tell them I will ring them with the results of my Coaguchek INR test and they can use this. They have now agreed to do this. I have always taken the view - there are two ways of doing things - my way and the wrong way - so my GP might as well get used to it !!!

    I might be 70 but I'm still working - part time - but I don't have that much flexibility with my working hours and I just tell the GP practice that I just can't keep taking time off work (at the moment I'm on weekly or fortnightly tests) and that's THAT.

    The other problem my local GP practice is that they only do the Venous Draw on a Thursday morning and get the results (new doseage and new test date) on a Friday after my blood has been bottled and sent away. At least they do email me my results - that's something I suppose.

    I have been in touch with my local CCG (following the recent NICE decision) and they tell me that they are now developing local guidelines, training packages et al to release to GP's. Again, that's something I suppose.

    Good luck guys and gals.

    John

  • Hi Peter, for a few weeks now have been self monitoring, but even when I tell the Warfarin Unit I have changed the dose, they do not check, at the moment I am still not at the therapeutic dose of 2.5 but they still telling me to take 3mg, crazy as I am now taking 2mg, my personal opinion is that they do not read notes on the Warfarin document on change of medication, it appears they just go by computer readings, this I find is wrong and could cause someone to have a serious bleed or even more, Roche have told me to trust their Coaguchek XS and it is looking good even though it shows point 3 higher than the Warfarin Clinic results, it seems to me that NICE and the CCG people should sort this out, if I took notice of the hospital I would be well out of control......regards.....Edd

  • Hi eddmer. The Anticoag clinics see hundreds of patients per day and have little choice but to follow the output from computer software which will tell them what dose to recommend. These computer programmes are based on "average" responses to changing dose but, as you will know by now, each patient is different and we all vary from that average. It is not surprising that you quickly get to know your own response to changing Warfarin dose at least as well as the clinic and the time may have come for you to move from simply self testing to complete self management. Do stay in touch with the GP or "Warfarin Unit" though for periodic checks and supervision. All the best. Peter

  • I couldn't agree with you more, Peter B - but trying to get support for self-testing or self-management from the GPs or hospitals presents a real challenge, as I know you're aware. I grew up with doctors and, although I didn't fancy the profession myself, I became only too familiar with the way they think and do things! To persuade your GP/hospital to self-manage is usually very, very difficult indeed. I am also diabetic and have self-managed my insulin since 1987. Fortunately I do this quite successfully and I’m still here with fairly consistent and low BM readings to tell the tale!!

    I had a stroke back in 2008, since when I have been on Warfarin therapy. It took me about three years to get 'approval' for me to self-test. I began self-management a short while after, as it soon became clear that the INR Star and Dawn AC programmes which the professionals were using were, as you said in one of your excellent postings, only providing an average ‘guesstimate’ dosage.

    When we moved home, the local hospital here wouldn't even talk to me about continuing to self-test, let alone self-manage. I eventually found a Medical Centre which used the CoaguChek meter themselves - and did their own titration and dosing (using INR Star). They agreed to let me continue self-testing and we have now arrived at a silly, 'unofficial' situation whereby I ring my results through to the Centre and they give me a dosage - which I then proceed to adjust myself anyway! We have however both agreed that if my INR readings should fall outwith certain limits +/- of my target of 2.5, I will call them and seek their advice. It appears to make them more comfortable with our arrangements – and I don’t think this is unreasonable at all. Over the last four years I have been registered with this practice, my INR has been very stable except for on a small number of occasions (illness etc), when I was able to recognise the problem quickly and ameliorate it before it became a concern. I do however find myself ‘fine-tuning’ on a regular basis to achieve a consistently-good reading.

    I should perhaps stress the point that self-testing/management is not for everyone. It is preferable I venture to suggest that you are able to interpret the INR readings from your CoaguChek meter and be familiar with how your Warfarin is absorbed – how long it takes a change in dosage to become effective in your particular case. The effects of Warfarin can last quite a long time in the body and it takes about three to four days to see these effects, which will vary from person-to-person. This means that a change in the dose will not be fully-reflected in your blood test until this time has passed. Warfarin of course can be potentially dangerous if you’re not sure what you’re about and this has to be taken into consideration when you decide on your course of action, together with the fact that other medicines – even over-the-counter products - can interfere with it, so you should always make your pharmacy aware that you’re on Warfarin. Try to take your tablets at about the same time each day; I take mine around six o’clock in the evening.

    Despite this, I cannot comprehend the fearsome opposition I met with when trying to self-manage my Warfarin and it caused me considerable stress at the time. I think I am someone of reasonable intelligence and fully-capable of managing my condition in a proper and effective manner – although my wife might disagree on at least one of those counts!! Sadly, I have only to scan this forum to realize that I was not alone and that the objections still persist.

  • I bought my own machine, birthday Christmas money, best thing I have ever got, I test if I have a headache also because I have hughes syndrome and have to keep my INR around 3.5

    It has been so reassuring , I also test when the anticoagulant clinic tell me too,mostly weekly.

    I am sure it has saved me from having more problems

    I get the strips on prescription luckily for me

  • Thanks Daisy, we must keep at this problem, I am in Poole Dorset, may I ask who prescribes for you?......regards....Edd

  • Hi eddmer, Where about in Dorset are you? I self test and manage and although extremely pleased by the new NICE guidelines still can't get Dorset CCG to consider prescribing the test strips and have to buy my own. I campaigned widely earlier in the year and my name is on file as a patient representative for when they eventually get round to updating their guidelines, but that's as far as I could get. Fortunately I can get finger prick tested at my surgery which is only 3 miles away in Charmouth and I argued that the test strip I would use was equivalent to the one used by the practice nurse and I was saving her time. I also included info from the consultative document which became the recent guidelines, but to no avail.

    Perhaps we should join forces and try again?

    Regards, Liz

  • Hi Liz, nice to hear from you, I live in Poole town, now I have just purchased the Coaguchek, not got it yet but in a day or two, but I did not get help from the Warfarin Unit at Poole Hospital, so made a few enquiries, found out that the Health Centre in Swanage used the similar system, the lady there called me and said it was reliable as they used it themselves on their patients, so I decided to spend the £299 for the machine, I do feel that we should get some help with the test strips as I said surely it will beneficial to easy the load on the Hospitals concerned......regards....Edd

  • Oops I hit the recommend button instead of reply!

    The coaguchek is money well spent but I wasted loads of strips until I perfected my technique which was annoying due to the cost. The stabber thing didn't seem to go deep enough for me to bleed enough!! I now have it set on 4.

    I'm going to have another go at the CCG now the guidelines are out. Good luck when your machine arrives. If you need any help with it just shout!!

    All the best. Liz

  • Hi lizzily. Quite a few folk have this problem of not getting enough blood at first. Going a bit deeper with the lancet is one solution but temporarily improving the circulation in the fingers will also work. Wash your hands well in warm water before testing (which is a good hygiene practice as well) and the warmth plus massage will help a lot as well as softening the skin.

  • Yes, we need a concerted effort to try and convince GPs that we, as self testers are perfectly capable of managing our INR and the dose of Warfarin to maintain it. I recently went into hospital for a hernia repair, I was advised to stop taking Warfarin for 5 days prior to the op, I tested each day and my INR was reduced to

    1.2, the op was cancelled due to an emergency, I then had to get my INR back to 2.6, so that evening I took 6mg Warfarin, I tested each day, taking 6mg, after five days my INR reached 2.4, I then went back to my usual dose of 4mg. On the 17th I had a new appointment to have the hernia repaired, it has been done and done very well, but I was in a similar situation with my INR and the Warfarin, My INR is now 2,6, but I was told by a non believing medical person that there was no need to test each day when restoring my INR,

    how would I know what dose of Warfarin to take if I did not Know my INR. I used more than a dozen strips in reducing and restoring my INR saving a lot of Surgery and my time, but I am still being refused strips on Prescription.

  • Thanks for your information, I am due to have a Knee replacement and you have enlightened me of the problems I can face, thanks..Edd

  • G'day micran and eddmer ......... thanks for that info. I'll bear it in mind. I'm in a similar boat to you Edd, - am hoping I'll get away with a Cortesone injection but must face the prospect of 'going right in' - so to speak. Bummer ..... still I do have my Coaguchek, and test strips and am well versed in managing my own INR testing process. More bloody trouble with my right knee than with AF :-(

    John

  • My Drs surgery gives me a prescription for the test strips every 2 months not sure how many are in the container ?? About 24 ish

    My Anticoagulant clinic are pleased that I can self test and St Thomas's hospital, London also approve

    I test and then send email to clinic and they either phone or reply by mail to what amount of Warfarin I should take

    Hope you manage to get yours on prescription

  • daisyd, You are so lucky!! I'm going to take up the fight again. There shouldn't be a post code lottery. Might even take it up with my MP. Feels like trying to get blood out of a stone. Ha ha. My GP approves of me self managing now he's sure he can trust me, but says he's powerless re the strips.

    I'm much happier having the freedom to test when I feel I should. Best wishes Liz

  • Lizzily. I wouldn't wish to pick a fight with your GP but in fact the local CCG only gives policy advice and budgets; the final word on actually prescribing is in the hands of GP if he really wants to prescribe the strips.

  • PBirt, My GP won't go against CCG policy. Dorset CCG's policy is not to recommend prescribing the strips to individual patients as in their view it's not cost effective on a one patient basis. Now, I have tackled them over this with what I thought was a convincing argument but to no avail, however the new NICE guideline was only a consultative document in April when my campaign was in full flow. Time to start again me thinks. It's the lack of equity that annoys me.

    Thanks for the bleeding suggestions! It was getting the drop of blood on the strip that foxed me for a while, and no matter how much I warmed and massaged my finger there didn't seem to be enough with the stabber set on 3. I've cracked it now with a bit of practice, but it broke my heart!! every time I wasted a strip.

    Thanks again, Liz

  • I'm in London, I recently switched from one clinic, which tested with a CoaguChek but wouldn't authorise me to self test, to a different one that will allow me to but ironically they only do venous tests themselves. My first clinic told me it was at my GPs discretion whether they prescribed strips or not, the second told me all GPs would, I'm in the process of switching GP now and will put it to the test.

    I'm young-ish and I have a very active freelance job, it's counterproductive to my career to have to explain to new clients that I need a morning off to go get a blood test, and it's not information I really want to share with them anyway. Aside from the inconvenience and unprofessionalism, I want to be able to manage my own INR and record much higher resolution data on how aspects of my lifestyle affect it.

    Whilst I'm a step closer to self testing with this new clinic, because they only test venously themselves it introduces a potential 5-6 day wait for results, which means my trusty Warfarin reminder app (OATbook) remains dormant until I've entered my last test results, so I have to rely on myself for reminders. So there's another argument for self testing and a potentially dangerous situation because I'm not doing it yet.

  • I bought my own Coagucheck device after arranging with my GP that I would receive the strips on prescription. That arrangement has been running now for around 2 years and is definitely the safest and cheapest option.

    Prior to self-monitoring I used to have my INR measured by a nurse at my GP Surgery; she used the same device and strips that I do so the cost of the strips (about £2.50) each is not and issue - but the time she spends does and by doing my own readings, that costs is saved.

    There are other ways to save that need to be negotiated with Roche and/or their wholesalers. The usual minimum supply is in tubes of 24 strips which is theoretically enough for a year of testing fortnightly. However, in my experience, my INR is stable enough to be able to monitor for a year on a once/per month basis. I have tried to order 12 strips but pharmacist (actually their wholesaler) claim that the only pack size is 24 strips [not true because when I bought the device it came with a tube containing only 6 strips].

    This is important because the strips have a shelf-life of around 12 months and become impossible to use (the machine rejects them) once out-of-date. Net result, up to half of my years supply are thrown away unused. As most of my working life was in the pharmaceutical industry I was able to speak knowledgeably about to manufacturers Roche about this and that conversation confirmed that there is no scientific justification not to pack in smaller quantities. Of course there is a financial reason against smaller packs because saving on expired strips will mean Roche, wholesalers and pharmacists will lose from 33-50% of their sales.

  • Unfortunately this is about budgets and control not the overall cost to the NHS. The surgeries have to pay for the equipment out of their budget and the doctors seem to want control or they're scared of being sued - the reason I was given to not bless self-testing, which I don't believe. I am fortunate that I can pay for my self-testing against my doctors will. But as I explained to him my life is too busy to allow me to visit a surgery twice a week; once to have the blood taken, once to get the result. I need to test regularly because I will forget to take my Warfarin occasionally and need to adjust the dose. I'm not senile; I have an intense job and when I'm not working 2 small children and an intense wife! At the end of the day's whirlwind I often think, "did I take it?".

    I've been on the wrong end of a number of mistakes by NHS personnel with poor and often arrogant decisions that have made life uncomfortable at times. One of them, had I not been prepared to stand my ground would have led to serious consequences for me. People including medical staff make mistakes and not all patients are hysterical children. If you go private you are treated with respect and dignity why can't the NHS just treat people like intelligent equals? I am the NHS's customer and I have paid for them!

  • I test weekly and order my test strips on prescription twice a year.

    If I let my pharmacy order them every two months as they want to do I would now have hundreds of out of date strips and have cost the NHS thousands of pounds!

    Just order them when you need them...

  • ianp5uk - I had the same problem in not knowing if I had taken my wafarin or not so invested in a small pill dispenser. This has 7 compartments labelled with the letter of the day of the week. - I fill these with the correct dose for a week and it is then apparent if I have taken or missed a daily dose.

  • What an interesting and slightly depressing read.

    We have a local <North Hampshire> AFA meeting coming up next month where we have a local CCG member plus GP in attendance. The aim is to lobby (of course) but to understand the timeframe and try to ensure the NICE recommendations are being acted upon.

    First approach to my own GP advising of the recommendation brought nothing other than the 'no-funds, numbers don't justify response. The local hospital eventually managed a similar far from positive reply.

    A collective voice I feel will be important, meantime in effecting change. Meantime, thanks to Pbirt for his part in bringing about the NICE recommendations. TC

  • I am surprised to hear that you may be experiencing some difficulty with the Dorset County Hospital with regard to the self-testing/management of INR. I had a stroke whilst living in Dorset and was admitted to DCH. I found a broad acceptance of patients using the CoaguChek and similar meters - but there are some for whom it is not really suitable, of course. Getting the strips is another matter, as you appear to have found out! I have never fully-understood the great mystique the medical profession surrounds self-testing/self-management with. So long as you are reasonably competent and dextrous there should be no problems at all. But there are! When we moved home up to Nottinghamshire I had the devil's own job getting them to 'allow' me to use the meter I had bought down in Dorset. Our first GP wouldn't hear of it and our local hospital - Kingsmill - and the consultant I had been referred to, wouldn't even discuss the issue. I ultimately found a medical practice that also used the CoaguCheck and did their own titration, using INR Star software to generate the dosing and since then everything has been reasonably OK. I take note of the comments P. Birt has made elsewhere on these postings but would add that the NICE guidelines appear to be just that - GUIDElines - which would seem to be routinely ignored by PCTs, GPs and hospitals up and down the country (Just read some of the problems people are experiencing on this site!). In closing, I would add that I achieve a FAR better INR regulation with self-management (as opposed to self-testing) than I ever was able to achieve with the venous tests and the Warfarin dosage the hospital used to produce. I have told my GP that I am 'fine-tuning' their dosage (they were initially a bit cautious but seem to accept this now and I think they are reasonably happy that I am able to do this without problems!). I test about once a month and my INR reading is usually within 2.2 - 2.7 when my target INR is 2.5!

    I wish you the best of luck.

    Kindest regards - Peter

  • I am in the last few days before ablation. My I.N.R. needs to be between 2 and 3. So I dutifully report my self tested readings to G.P.. on day 1 my reading is 3.1 so they tell me to reduce my dose on 3 days. I ignore this as I know what the result will be. Even so on day 3 my reading has gone down to 2 but G.P. leaves me on the reduced dose. Where it would have been by now I don't know! Anyway when I see my arrhythmia nurse on day 4 it is 2.4. I decided to come clean and admit to ignoring my surgery advice ,no problem, she thinks I am very sensible and capable of sorting myself out! We agreed that if my I.N.R. goes down below 2.3 I take an extra mg hopefully that way I may get to ablation date at the right reading. No wonder so many get cancelled at the last minute . Let's hope mine isn't one of those.x

  • Sorry I was trying to make the point that self testing is more likely to ensure staying in range for more of the time so I feel we do have a right to that.

  • Of course, you're indisputably correct, dedeottie! But I feel you might mean self-MANAGEMENT because if you find your INR has wandered too far from your target, you need to be able to do something about it! (Adjust your Warfarin slightly for a short period). The difficulty is that the adjusted dose will not produce an increased/decreased INR reading instantly on your coagulometer. So you have to take this into account and proceed gradually. You sound like someone with the capacity to be able to manage this easily though, fortunately.

    Doctors - even in this enlightened age - still appear not to react kindly to ordinary mortals questioning their diagnoses or advice though, so we are faced with this constant battle to manage our own problems without the benefit of a sensible exchange of ideas, often finding it easier to go it alone with their grudging approval (or without it!). I send you my warmest regards and wish you the best of luck. - Pete

  • Thanks Pete. X

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