Self Testing

[feejbee]

I've just bought a Coaguchek machine for my own piece of mind after so many of you say how good it is It's an amazing piece of equipment but one my doctor and health authority will not accept the results from. I still have to give an armful of blood every two to four weeks. I have suggested that I go to the clinic every 2 months or so and self test in between times. I think that'll be acceptable to them but they will not allow me to have the testing strips on prescription.. Infact I was made to feel rather elitist by daring to spend so much money - £300 when I already can be tested for free at the clinic and why should I feel the need for wanting to keep a weekly/fortnightly check on my I.N.R. I expect most of you with AF will understand why and having had a T.I.A. and then a stroke it should be obvious.

Fi

[BobD Volunteer]

Yes I understand that. Sadly the whole anticoagulant thing is badly thought of in this country and only about 50% of those who should be on it actually are.

Bob

[dedeottie]

I am treated as a bit of an oddity by my anticoagulation clinic for self testing but they do accept that my testing results are accurate and do let me have strips on prescription. It is obvious though that they don't understand why I want to keep a more frequent check on things. If they had the 3 T.I.A.s that I had while waiting to be diagnosed they probably would understand!

[Terjo]

If I had to take warfarin again I would not take it without doing a coaguchek test .I bought my machine when I had to take warfarin before having a cadioversion. I had previously been in hospital the year before with a life threatening liver bleed caused by too much warfarin . Afterwards my gp practice bought a machine for their testing and are very pleased with it. It seems foolish for health authorities to play games with peoples lives. Good luck with your search. Teresa

[tk11]

I do not liase with my GP practice at all, I have an anticoagulation specislist nurse based in the hospital. She sets my dosage and sees me occasionally to cross check my results. She also helped my getting prescription test strips on repeat prescription.

Try talking to the haematology department at your cardiologists hospital see if they can assist or advise you.

[Dodie117]

Agree with everything you said If so good luck with it. I too am more at ease having it and being able to do my own check. Thankfully both my gp and hospital are supportive. Marie

[farmerwalt]

Hi Fi, I've been self-testing now for around 11 or 12 years. Initially I had to buy the test strips and after about a year of buying them I received a letter from Roche Diagnostics saying that the Department for Health had decided that the test strips would be available on prescription. I visited my GP the next time I required test strips and told her about the letter from Roche. She checked up on it and gave me the prescription there and then and I've been getting them on 'script ever since. From reading the posts, here on HU, it certainly appears to be very much a "post code lottery" around the UK, for health care.

As for "testing free" at the anticoag clinic: it is only "free at the point of use". We are paying for it through our taxes. They should be made to realise that those of us who are self-testing are freeing up their resources and allowing them to get more patients through their clinics, thereby reducing delays.

I don't understand why they are not accepting the CoaguChek results. The Greater Glasgow Anticoagulant clinic, that I used to contact, use the CoaguChek machine in their clinics, albeit the professional machine. Cross checks that were done while I was in contact with them always agreed. Both use exactly the same test strips. The professional machine reports to within 0.01 INR where the "self tester" machines report to within 0.1 INR. So, at worst, your INR could be 0.05 different from a professional CoaguChek, which is nothing and well within statistical error.

I've also had several TIA's, prior to warfarin treatment, and agree that it is high up in the priority list to make sure my INR is within range.

Perhaps we should be asking AFA to lobby MP's, as well as doing it ourselves, to get the Department of Health to inform hospitals and GP's that the test strips ARE AVAILABLE on prescription.

Sorry to go on a bit, but hope you get things sorted out.

Walter.

[Dadog]

You're not 'going on a bit' farmerwalt, that is an interesting and useful insight into this self testing thing. I checked with my GP nurse, who takes the blood sample and sends it off; and who was on a course learning all about self testing and the management of it all. The end result was that the scheme was dropped as it was suggested that insufficient patients would be involved. She did remark that not everybody could afford the machine anyway. Regarding getting the strips on prescription - surely the costs in clinic time, getting results and samples to the main hospital and reducing what is always a full appointments system, has got to be worth the cost of strips for some people who wish to do things that way? I'm up for my cardioversion this week so will ask them what the position is from their end.

[feejbee]

Thanks everyone for the replies, it's very comforting to read that basically you all feel like I do .If we are able and want to take control of our health why shouldn't we ? After all we do have a vested interest in the outcome. As Walter suggests a campaign led perhaps by the AFA and patients might be a good place to start.

Fi

[beano2013]

I have no problem with my G.P although hospital INR clinic not happy I self test. I find it very reassuring and time saving. Think problem is that they pay hospital to test in mass and self testers cost money albeit a very small amount. I think you need to have frank discussion with your G.P. Test your machine reading against your blood test and if they agree suggest you just self test. Beano 13

[feejbee]

Hi Beano

Have spoken to my GP and its an absolute no. They wont support or accept self testing.So I do both -testing myself to keep me happy and get tested at the clinic to keep them happy. What a waste of time and money.

Fi

[Hidden]

I've just had a month or so where they couldn't get me off an INR of 1.8. They increased my dose, checked me weekly or fortnightly, which all made sense. Suddenly, it shot up from 1.8 to 2.5 in a week or so. Then, having got that result, I was kept on the same higher dose and at the same time they arranged for the next test to be in a month's time! Sorry, but that is completely illogical, as clearly, my rate of increase was on a steep upwards curve for whatever reason, so in one month's time I could be up to 4 or who knows what !

Anyhow, I didn't wait a month and instead had another test done in 2.1/2 weeks, they didn't ask why. Guess what, my INR has jumped from 2.5 to 3.3 in that 2.1/2 week period and is probably even higher today. They have now put my dose back down to it's original level, which kept my INR at 2.5 before all this started to happen. But actually, I'm going to miss a day, then go back on the suggested dosage.

I'm not bothered about 3.3, just what it might get up to if not tested often enough when things are changing.

I am definitely going to get my own kit and may not even mention it, i.e. same as you Fi. Apart from anything else, worrying about your INR ain't a good idea.