Coaguchek

I take it you are doing this on the quiet as your Heath Authority do not approve. I am at odds with the rules about distance between tests too. I'm currently on two months between one and the next and it's not comfortable. I don't feel my INR is sufficiently stable. It has been 'in range' for six tests but not in a nice steady way. It wanders for no good reason. I am seeing my GP about my concerns. I'm hoping for a Fitbit in my Christmas stocking but might have to settle for a Coaguchek.

Hiya feejbee,

Obviously not only are your local health authority living alongside the dinasaurs but they are not across the current NICE Guidelines. I suggest you read for your own personal experience NICE Diagnostic Guidance 14, (www.nice.org.uk/dg14) then present it to your local health authority and ask them to put IN WRITING why they are refusing to issue test strips and why they will not approve you using the Coaguchek device. This DG 14 is entitled - " Atrial Fibrillation and heart valve disease: self monitoring coagulation status using point of care coagulometers ( the Coaguchek XS system and the INRatio2 PT/INR monitor) ". When I lived in Surrey I had no problem with my local surgery in using this device (Coaguchek XS) nor getting support, nor getting test strips on prescription. Since I've lived in Cornwall I've had nothing but negativity and bloody mindedness. What a bloody shambles.

I've now got to the point of telling my GP that where a work commitment interferes with my INR blood test I will not keep my appointment but will phone in my Coaguchek INR reading and I expect them to deal with it. It will all come to a head around Christmas when I am due for my next INR - in which they take blood by Venous Draw. Meanwhile I take my own fortnightly INR readings using Coaguchek XS. At least my surgery here in Cornwall will prescribe my test strips - I travel to Australia at times and need my device with me, so they can hardly refuse me.

One way or another they will do what I want and when I want it. Meanwhile it is unpleasantness all round.

Good luck to you in your fight.

Aussie John

Thanks Aussie John. I will read the guidelines and then might give it another go at trying to get strips. I'm sure it's only a matter of time and we'll all be issued with a coaguchek machine and strips ,it must be more cost effective than going to hospital or surgery for a blood test .

Aussie John is absolutely right, you really do have to fight back sometimes. I was initially turned down for prescription strips but when I wrote to my local Care Commissioning Group to ask if I could address them at their next 'public forum' - and would they mind if I brought a feature writer from the local paper along - I was advised less than a week later by my GP that it had been decided to issue me the strips on prescription. I'm no longer on warfarin having changed to the NOAC Apixaban, so I never got round to using the system as it turned out.

Also re frequency of INR testing. The local clinic will show a suggested date for your next test in the yellow book but if, like I was, you are anxious about your INR levels you can go and have your blood tested as often as you like - it really is entirely up to you. In the five years I was on warfarin I would guess I attended for blood tests earlier than the date shown in the yellow book on at least 75% of occasions and it was only ever questioned once. Just once in five years. I suspect they are told not to query the date because if you think about it, imagine a scenario where you turn up for a test, the phlebotomist tells you you have come too early and you leave. A week later you have a stroke. The legal implications are mind blowing.

Our very lives depend on our INR readings remaining in therapeutic range and, inevitably, while some are quite relaxed about their levels, many of us are much more anxious. You go as often as you want to and please, if you do come across the slightest opposition to this, publish the details through this forum. I, for one, would be delighted to follow that up on your behalf.

Crikey Fi ! That's a very long time between testing when you are unstable .I wouldn't find that acceptable at all but then I never had this problem with my clinic. Am now self testing anyway and do so every week .... great peace of mind. I hope you canpersuade your health authority to have a change of heart.

"My health authority will not prescribe testing strips or approve of me using a coaguchek. Why, if there is to be such a long time between tests surely much cheaper to issue strips than me have another stroke."

So true. They could do with a good, forward thinking accountant, cause they haven't got one now.

K

Yesterday I was diagnosed with a chest infection and prescribed a course of antibiotics. I queried the effect it might have on my INR levels and was told "we need to keep an eye on it."

My GP knows I self test with my own Coaguchek but my area do not supply the test strips, however I am told if I notice any sharp changes to ring for advice!! Says it all really.

As has been said above you can challenge the CCG about test strips- Also, you could try telling your GP that if they won't prescribe test strips you might change to NOACS- much more expensive than test strips- that might work- doesn't mean you have to change just that you 'might'- and if they say you can't then quote NICE who have said patients have a legal right to NOACS unless they are clinically unsuitable for that particular patient!!

I so agree with everyone that we shouldn't be put in this position

Our CCG asked me to address 200 local GPs - I was on a panel with some doctors- and I challenged the audience (at Epsom Playhouse) to find me a GP with AF who doesn't test weekly if they are on Warfarin!!

well done Carol!! We do have to battle - pleased you won yours!!