I am doing battle with local providers/ CCG regarding making enough strips available- some studies show weekly self testing produces much better times in range
It would be really helpful to hear from anyone self testing- frequency, time in range - whether they have had easy access to test strips etc- as the CCG have asked me be on the group looking at anti-coagulation and I need patient stories to do this well!!
Thank you in advance!!
Rosemary
Hi. I live in South Wales and so far my surgery has been happy to fund testing strips for once a week testing. However when I was in lancashire I had to sign a contract with the hospital in order to be allowed to self test. I had to agree to only test on the dates I rang in my results which was every 8 weeks. It was moved to 8 weeks because I was deemed to be stable. I was stable because I bought my own strips and tested weekly thus I was able to either adjust diet or dose slightly. The hospital really did not want me to do this as you can imagine. I don't understand why a 9 year child can be trusted to adjust their insulin dose if diabetic yet an adult can't be trusted to do the same with warfarin. Thank goodness my new surgery is fantastic so I don't have a problem anymore. Hope that is helpful. X
When I first bought my Coaguchek device I tested frequently, once every week or 2 weeks. Now I tend to test the day the nurse 'phones me for a reading, every 7 weeks or so, unless there's any other reason between tests to do an additional test, e.g. if I cut myself and the blood seems to be taking a long time to coagulate.
Thank you Thomas- do you find you are in range when you wait for 7 weeks?
Generally yes. The last 3 readings I've taken were 2.7, 4.1, and 2.5. The interbval between 4.1 and 2.5 was only a week, without any change in Warfarin dose. The only regular thing about the food I eat is that it's irregular. I'm taking prednisolone to relieve the pains of polymyalgia and have very little appetite, so irregular meals. I get the test strips on prescription, 24 at a time. My GP specialises in the treatment of AF, and compares the management of AF with the management of Type 1 diabetes. My sister has Type 1 diabetes and receives all her testing equipment and insulin on prescription. Like me she's over retirement age so gets prescriptions free of charge, but all Type 1 diabetes patients including those under retirement age get all their testing equipment and insulin free of charge on prescription.
Hiya Rosemary,
To answer your specific questions - I self test with Coaguchek device between 30 and 70 days, and I am always in range - between 2.0 and 3.0. My target INR is 2.5 and I rarely hit it, commonly 2.4 or 2.6 but rarely 2.5. Occasionally, usually after a night out 'hitting the town' I forget a dose comepletely and obviously that destabilises things, (this happened about a month ago and INR dropped to 1.8) - then my surgery drop me back to weekly INR checks. Once I get back in range then the INR test intervals become less frequent. After this last stuff up I'm now back to 30 days ! Sometimes though, about 3 times a year and for inexplicable reasons the INR surges up to as high as 3.6, and sometimes as low as 1.2. I ignore these extremes unless they show a regular pattern. So far they have been purely one off.
HOWEVER, you maybe interested in my experiences in INR testing in Surrey and now in Cornwall. When I lived in Dorking, Surrey my local GP's surgery was exclusively equipped with Coaguchek devices and that was their INR testing methodology. For those that were prepared to stump up the cost they would offer every support for the patient in learning to use the technology, they would supply Test strips on NHS - I used to have them in the double packs (each pack containing 24 strips) - and they would also help with dual testing, i.e. finger prick drop of blood on their device and a finger prick drop of blood on mine and compare readings, sometimes they would be the same sometimes the result would be + or - 0.1. Results would be available within 4 hours.
None of the stuffing around that now goes on down here in Cornwall where I now live. Now I am down here INR testing is done by drawing blood from the arm every Thursday, sending it away to a Lab and getting the results the following day between 11 am and 1 pm. Every time I have a 'bloody arm' job I always test with my device and twice I have found the results of the 'bloody arm' technique wanting and have had to challenge my GP and have been given revised doses.
Despite this my Cornish GP of choice (who did her GP training in Brisbane, Australia) and last year I went to her asking for test strips to take to Australia with me last Nov - no sweat. I didn't expect to get them without a argument but she prescribed them on NHS right away but only in test packs of 24 (as we write I have 5 left) and was prescribed them in Oct 2013 - maybe it was my irresistable Aussie charm that did it ! Seriously, now I have been prescribed them and as my Cornish practice does repeat prescriptions online I shall try that method to get more when I get through this supply. However, if I am refused, irrespective of reason I will fight tooth and nail with my GP, the local CCG and if necessary my MP to get what I want.
Hope this rant helps you.
Rosemary, I would be happy to name the practice I was with in Dorking - chances are they come under your CCG. Won't name it on here of course can send it privately.
I'll leave you a final thought, I now live just outside Camborne, Cornwall not a wealthy area at all and what wealth there is, is dependant on seasonal trade. In comparison, Dorking is very wealthy and maybe thats the point - the Dorking practice is so large compared to my Cornish one that there are more economies of scale there than here in Cornwall .... so the area with the higher and wealthier population get the benefit of more modern (and in my opinion) better technology than their brothers and sisters in poorer and a smaller population in Cornwall. I'd be really interested in any outcomes with your involvement with your CCG. Thank you. If you need more info on my experiences just ask away.
Cheers
Aussie John
Thank you for all the detailed information Aussie John,
I am in Epsom but the practice I am at restricts to 12 strips a year!! I am very involved with NHS England project for Kent Surrey and Sussex on AF and Anti Coagulation and also with the CCG on stroke prevention and will take the opportunity to fight for sufficient strips on prescription and also self management where appropriate so it's very useful to know about Dorking- it would be great if you would let me have their name by private message.
Many thanks
Rosemary
Hi Rosemary
Had no problems getting test strips from my gp in South London. Test every 2 weeks although hospital want less often
Many thanks for this- will see you soon on 7th! Let me know if you want to meet up with Jane and I before the meeting
Hi Rosemary, can't get testing strips on prescription in Dorset in spite of a mega campaign with my CCG. Have put my name forward as a patient representative for when they review their policy. Am in France and just changed to a mainly veggie diet so testing weekly myself having had to buy strips....it ain't fair!! Staying in range so far...2.4 last week and it's so reassuring to be able to self monitor. Regards Liz
Thank you Lizzily- The chair of the South East Coast meeting is from NHS England and I will make him aware of the postcode lottery which is appearing from this forum and ask him to do something nationally I don't see how one can hope to get more people in range and reduce stroke without making sure people can test properly
Not sure if this is in your remit Rosy but how about making them aware of the postcode lottery with getting NOACs prescribed?
yes I can put that forward and will let you know the feed-back. I use the expense of NOACs as an argument for allowing more strips for INR as if patients can't stay in range they need to be changed to NOACs!
Not the argument I would use but thanks!
No I appreciate that it wouldn't be a good argument if one wants to have NOACs!! It may stop them being so mean with the strips! I'll put the question re NOACs but they seem to be waiting to see how people get on with them. One cardiologist said he thought either they will be ruled out or we will all be taking them in a few years time! This wasn't a discussion in the context of cost but more of effectiveness and safety.
Hi. I am in Sheffield and normally test once per week. My GP prescribes my strips in lots of 48. They are on a repeat prescription and I can order a prescription on my GP practice on-line system which I normally do. I have been self testing for 15 years now and my one concern is that during all that time I have had a review of my repeat prescriptions only twice and only on those two occasions have I been asked to have an INR check done by a clinician to correlate with my own tests!
It's great that you have this freedom PBirt but I agree re the checks- I know the guidance is that a test should be done on every 6 months to make sure our machines give the same result as the surgery's machine/ hospital test!
Thank you for letting me have your information
best wishes,
Rosemary
Hello Rosemary, my experience virtually mirror PBirt. I recently changed practices from one in Hampshire which I had been with for many years, to one in Central london, both supply my strips with no questions asked at all. I find that it is up to me to balance my Coaguchek against lab readings, which I do willingly every 6 months. To maintain a range between 2.5 - 3.5 I take 13mg daily, sometimes for no apparent reason the INR can start to drop or rise, by keeping an eye on it every two weeks I am able to avoid unwanted surprises. Hope this is of use.
Thank you- really useful information to take to the various meetings!
I self test once a month.
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Coaguchek XS Test Strips on prescription.
