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.

Yes, you are right I am testing on the quiet. I have given up asking to self test ,I just do it. Gives me peace of mind.

Why do we have to do this? Why do they dismiss our concerns? I am sure I could self test and self manage my dose and have a good INR all the time but I think my GP will be reluctant to let me. He may say I can self test. But what if he doesn't? Shall I just say I think my INR is too wobbly to let it run for more than four weeks? I feel I'm being pushed into being secretive. We are the ones whose lives will be turned around by a failure of protection from warfarin so we do 'worry' about going out of range.

I may well have to follow your good example.

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.

Thanks for the reply.I have my blood drawn at the GP surgery and only by appointment but I expect I could request a test more often if I wanted but not necessary as I have the Coaguchek machine - ironic as the powers that be don't recognise it as anything but an unreliable gadget. Also as for the yellow book I've never been asked by anyone - dentist, pharmacist, doctor,etc I ask them if they want to see it.No is the answer.I fill in my INR results myself.What is the point?

"unreliable gadget"

They use they ruddy things themselves in GP surgeries all over the country.

It's so patronising it makes me really angry, like I have said before AF is a heart condition, it does not affect our IQ.

Grrrrrrrr

Ian

Exactly!!

Although to be fair ,my surgery don't use it ,just a venous draw and blood sent to the hospital lab.

They had not heard of Coaguchek so therefore it must be a gadget. A little research might be useful but I suppose they must be bombarded with stuff all the time.A national directive is what is necessary.

Fi

Here, here Ian, I heartily agree with you. I've been using the CoaguChek for about 12 years now and don't have any problems here in Central Scotland. However it still annoys me when I read all the posts about the problems others are having in England and Wales. As I keep going on about, where is this NATIONAL HEALTH SERVICE they try to say we have? It doesn't exist!! It's very localised.

Enough said.

Walter.

Walter - well said. This NATIONAL HEALTH SERVICE is only NATIONAL in geographic concept .... NOT in application. In application its a postcode lottery centered around financial considerations and perhaps the whims of individual Lead GP's in local medical practices. As I've said before - a bloody shambles.

Nuff !

Aussie John

G'day again feejbee,

By way of a follow up to my previous post I did in September 2014 contact my local CCG and basically asked the question what is happening re the NICE guidance DG14 (that I referred to) and explained why I was interested. Below is their reply :

" In response to your query regarding the recent NICE Diagnostics Guidance (DG14) on 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) the Cornwall Area Prescribing Committee have noted the guidance at the September meeting. In order to implement this guidance we need to develop a strategy for training patients to use the device, how we are going to ensure Quality assurance and a number of other considerations that will arise from a change in practice for some patients.

If you have a further specific query please do contact me directly. "

Time for another follow up I guess because - as I pointed out to them I've already had my training when I lived in Dorking, Surrey - what I want is a system put into place in Cornwall whereby I can use my skills and my Coaguchek device. I do understand the need for the CCG to address these issues they mention above but not at the expense of those who already have the device and the skills.

Aussie John

Hi Austin John

I didn't realise I was so intelligent!!

I read the instructions,on how to use the Coaguchek X S ,followed them and surprise surprise ,received an inr result. I'm now skilled.

I do understand though that it perhaps isn't that simple for all for many reasons and the powers that be have to take that in to consideration but I'm sure most of us on this forum can manage to test all by ourselves. Surely the GP can prescribe strips to those that can and arrange blood tests for those that can't.

Fi

Its like Ian says - you've been diagnosed with an Arrythmia NOT an IQ issue ! I think ... to be honest the real issue is they have a problem buying the software from Roche to load on the medical practice computers, then equipping the practice with the Coaguchek devices, then training the practice nurses in using the total system (the patient only has a small part in the use of the system) and from time to time organising the patients Coaguchek device to be checked and re - calibrated ... not forgetting dealing with patients queries.

AussieJohn

Exactly.

Sorry just seen my post .I did write AussieJohn but predictive text changed it to Austin John. Ammunition for the "powers that be " that I might not understand !!!

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!!

Let me guess .....

I bet they didn't find anyone.

Thanks for the advice.

Fi

Great Point Rosemary

If you have a sticky GP perhaps ask him if he'd prefer NOACs at roughly £85.00 a month, or test strips at £3 each or £13.00 a month, we have a RIGHT to both of them.

Ian

Hi,

Well done Rosy that was a very powerful approach....

I recall years ago - I was in a meting with the head of Social Services -Education officer and Headmistress of my daughters special needs school....I was fighting to get get my daughter funded in an out of county placement and of course they didn't want to pay for this...There argument against me was I was preventing my special needs daughter making "friends" in the local community....I composed myself and then pointed my finger at each individual around that table and asked each of them in turn how many of there "Best Friends" had special learning difficulties...Needless to say after four years battle and just short of appealing to the secretary of state my daughter got the placement ...The moto of this is sometimes we have to "meet fire with fire" to get a satisfactory outcome.....

Regards,

Carol...

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