Self testing INR - Provision of test strips on prescription. A follow-up.

[RobertELee]

I said I would come back on this one as my GP surgery had initially turned down my request to have INR self testing strips on prescription. Politely but firmly, I made it very clear to both the surgery and my local Clinical Commissioning Group that, as I was now retired, I had all the time in the world to make a right royal fuss to bring about a change in their policy which I believed was both discriminatory and contrary to their written commitment to patient well-being. If the National Health Service, which most of us have contributed to, authorise these as prescription items in Cornwall, Berkshire, Dorset, Lancashire and many other parts of the UK, then why should my local area have a different policy? I will accept any ruling, on reasonable grounds (clinically ineffective, too expensive etc), that says no one in the population can have it. But I will not accept that because I live in a certain area I am to be deprived of a benefit enjoyed by others.

Perhaps it was simply the season of goodwill but I'm pleased to say that they have now agreed to provide me with strips and lancets on prescription. Without appearing ungrateful, I'm actually going to give Dabigatran a whirl for a while to see how I get on with it but it's nice to know that if I come back to Warfarin for any reason, then I will have the reassurance of self-testing available to me - without having to move home!

I remember my first cardiologist appointment, following my AF diagnosis and with a Chads score of 1, dismissing my request for anticoagulation. "You don't need that" she said "unless you get diabetes or have a stroke". I realise now that, however wonderful our medical professionals are, they don't always know best.....

lee

[Beancounter Volunteer]

Good for you Leelec and well done

Even if you don't use the free prescription, you have fought and won the good fight for all those in your area who come after you, and they will be in your debt.

And I echo your sentiments about anti-coagulation, regretably far too many GPs and even Cardios dismiss requests when actually they should be encouraging us. We've seen it time and time again on this forum with people being scared about the risk of bleeds by their GPs when actually the risk of stroke is much much higher.

Well done again

Ian

[BobD Volunteer]

Hi Lee, I echo what Ian has said and applaud your tenacity. Far too many people blindly accept what they are told by doctors without question to the detriment of their treatment in some cases. Well done even if I don't like the idea of dabigatran myself.

Bob

[RobertELee in reply to BobD]

Thanks to everyone for the responses - hopefully others will challenge their own GPs in future if they are turned down. Dabigatran - not the tried and tested treatment that warfarin is Bob. Would that be the main reason for your comment?

[BobD Volunteer in reply to RobertELee]

Yes Lee, that and no antidote. Old is good sometimes and since I have never had a problem with warfarin see no reason to change. For those few who for whatever reason can not take warfarin it is good to have alternatives mind you.

Bob

[RobertELee in reply to BobD]

I must admit Bob, the key issue that puts me off the warfarin replacements is the fact that there is no way of knowing they really are working! That probably sounds daft but if you think about it, every other pill, powder or potion we pop for illnesses that come and go, either cure the condition or they don't. With drugs we are on long term such as warfarin or tablets for hypertension these can be easily checked for their effectiveness by taking one's blood pressure or having an INR test. With Dabigitran and the other new kids on the block - it seems we simply have to assume that they are providing the protection we seek but without any way of checking it. I'm a bit of a doubting soul and I crave regular reassurance in these matters which is the main reason I wanted to be able to self-test my INR. I'm seeing the cardiologist in a few weeks and, like you, I might just stick to the good old rat poison!

[MarkS]

Well done, Leelec. Through your action you may well stop others getting avoidable strokes, even if you don't get the advantage yourself.

I'm still not sure who makes these decisions about whether they fund strips or not - whether it's the surgery or the local commissioning group. I would like to see AFA getting involved with this.

Personally I get on very well with warfarin with my Coaguchek. I've had a very merry Christmas, with plenty of the red stuff, brussel sprouts, broccoli, cranberries etc, and no waiver in my INR from it's usual 2-4-2.7.

Mark

[Hidden]

Well done Lee, stick it up em that's what I say

"I remember my first cardiologist appointment, following my AF diagnosis and with a Chads score of 1, dismissing my request for anticoagulation. "You don't need that" she said "unless you get diabetes or have a stroke". I realise now that, however wonderful our medical professionals are, they don't always know best.....

eeeerrrrrr.......I see, you wait for a stroke, then go on warfarin, how lovely

I'm fairly sure I have a score of zero, and my EP has me on Warfarin. Maybe I'm wrong on that but when I filled in the score sheet online, I came up with a zero! Got myself worried, now as maybe he knows something I don't !

Regards

Koll

[Hidden]

G'day lee,

Well done you. As we say in Cornwall ....... propajob ! Some times in life you just need to be assertive in order to achieve what is rightfully yours. I'm pleased for you,

On the matter of dabigitran ..... I agree with BobD. I have warfarin as my best mate, (my second best mate is bisoprolol ......... and my third best mate is any Aussie, South African, Chilean or Argentinian red wine !!). Seriously, if warfarin is doing its job, not causing too many problems - its a case of - if it ain't broke don't fix it. Yes Warfarin and all the stuff that goes with it is a pain in the butt - yet it can be managed in so many ways. In my humble view I would only use dabigitran if I were one of those unfortunate souls whose body just cannot deal with warfarin.

Happy New Year to you and to all AF'ers - may the force be with you in 2014.

Aussie John

[farmerwalt]

Well done Leelec. Good to hear of your success against the "authorities"

My cardiologist must have been like yours. No mention of anticagulation when first diagnosed with AF about 15 years ago. Only following a TIA, 13 years ago, was I started on warfarin, by haematologist, NOT cardiologist. As others are saying, I'm quite happy with warfarin especially since I can monitor it myself.

Best wishes for 2014 to you and others on the site.

Walter.

[Dadog]

Great stuff! Well done. I too would like to self test and would find this more convenient, I would be in control and it would save trips to the surgery for repeated needle blood letting. But what do I tell the GP? Are my reasons enough for him to agree. His obvious reaction would be "Why do you want to self test?" What argument should I use? I'm happy to buy the machine.

[Dodie117 in reply to Dadog]

We'll done Leelac and I am sure this will benefit others in future.

Dadog, you too can do this. I told my gp that I wanted more regular testing than once every 2 months and as I travelled out of the country quite a lot then this was best for me. Also as Leelac says, if some ares say yes and nice say yes then you are entitled. Finally saves nhs time and money if you are not going in for tests all the time. Good luck. Marie

[RobertELee in reply to Dodie117]

I agree with Lallym. Dadog, you shouldn't understate the 'convenience' factor. But like Lallym I wanted more frequent 'reassurance' than was routinely offered by the warfarin clinic. Who knows, I might have become unhealthily anxious and slumped into depression or worse? They wouldn't want that would they? All's fair.....

In terms of prescribing the strips, you might find that your GP and your warfarin clinic pass the buck to each other or they may say that the final decision is down to your local Clinical Commissioning Group. At the end of the day this is probably the case but the CCG won't want any adverse publicity and your wellbeing is almost certainly a key component of their Mission Statement/Charter. They certainly wouldn't want an unhappy Dadog attending their regular public meetings! Providing your GP agrees that you are both physically and cognitively able to self test (not everyone is of course), I am sure you will succeed....

Good luck.

[Hidden in reply to Dadog]

G'day Dadog,

I lived in Dorking, Surrey when I was diagnosed by East Surrey hospital. Eventually my condition was stabilised and I was referred back to the care of my local GP. It took many weeks for my body to accept Warfarin but eventually everything settled down and I found I could keep - not just - in range but on target too. During this period I learned a lot from the practice nurses including a whole load of useful stuff about the Coaguchek device. At the time I was working fulltime driving buses on shift work - earlies, middles and lates. It was becoming so difficult to get to surgery for the INR test which in those days was about every 10 days that in the end I decided to buy myself a device and got tremendous support from the GP's practice. I also travel back to Australia ( and elsewhere ) and it is just so convenient to have this device in my bag for my regular testing or just for testing for peace of mind. For me it is a lifestyle thing. That said I believe it is more economic for NHS to have this uniformly in GP's surgeries. Yes there probably is a high start up cost, i.e. - a capital cost, software cost and staff training cost but I believe that the break even point would be reached very quickly, particularly in areas of high population where one would expect that AF population might be high too. In Surrey - all I did was a blood test wherever I was and ring the result through to the surgery reception who asked me some questions, i.e. had I missed a dose, had I been taking other medication and asked about my diet too. This would all be factored into to the surgery Coaguchek software and within 2 or 3 hours the surgery would phone me back with my new dosage and next test date. So simples !

Although I've now retired to Cornwall I am still working (part time) driving buses my local GP doesn't use this testing process. Its the blood letting from the arm trick and waiting 24 hours for a result and the testing is only done on a Thursday. No deals - put up and shut up. Interestingly with this process (the arm blood letting) - they never ask those three questions I mentioned just now - just draw the red stuff, bottle it and send it off !!!! So this technique doesn't factor in known variables all of which can influence the result. However, that said, this surgery will prescribe me on NHS the test strips and lancets I require and I used my tendency to travel long haul and to remote places as my reason. I also use it to check the results of the blood letting and twice now I have found and proved to my GP that this 'old fashioned' technique is producing incorrect results with consequential incorrect new doses being prescribed ! Clearly, the surgery now know I use it to check the blood letting process ! By the way I'm now on 70 day tests.

Hope this gives you a few clues - apologies for being so long winded.

Cheers

Aussie John

[Morein]

I am interested in the idea of self-testing, but how to calibrate these machines?

Regarding the refusal of your GP to authorise test strips for self-testing successive governments have turned a blind eye and never asked for payment from people entering the UK for the sole purpose of undergoing complicated surgery, or having difficult confinements. The current administration are now making noises about collecting payment for NHS treatment from people who are not UK or EEC residents, but I want to see action not words. While this situation continues I don't see why any of us should be denied what we have already paid for through taxation.

[Dodie117 in reply to Morein]

The machine does not have to be calibrated as comes from Roche ready to use. Like you, I had some doubts but when I have a blood test in the clinic I do one on my machine just before and it is consistently .2 higher than the hospital I.e. my machine says 2.8 and hospital lab says 2.6 so I think this is the way to check it is working properly. I still have blood tests in hospital every 2/3 months and they are fine with this. I can ring at any time if doubts/inr too high/too low etc.

Hope this is helpful. Marie

[Hidden in reply to Dodie117]

G'day lallym,

I'm with Marie on this except I never go back to hospital every 2/3 months. The variation between my Coaguchek device and the surgery blood letting is consistently + or - 0.1. See my post on here today to Dadog for more detailed info.

Cheers

Aussie John