Some of you may recall that I have posted on here moans about the INR testing facilities offered by my GP's practice here in Cornwall.
To recap - I was diagnosed with AF by East Surrey Hospital in January 2010 and after 6 days of diagnosis, monitoring, a variety of tests and warfarinising I was released to the care of my GP in Dorking, Surrey.
My Dorking GP's practice performed INR testing using the Coaguchek XS system and did so long before the NICE Guidelines DG14 were published. The practice nurses administered the INR testing process and results were provided on the spot by the practice computer within minutes. The results recorded the INR at the time, next dose and the next test date. Simples.
Fast forward to August 2012 - on arrival at my new home near Hayle in Cornwall I registered with a medical practice within 5 minutes walk away. Almost immediately on arrival in Cornwall I was due for an INR test. I was rather surprised to be introduced to the Venous Draw technique – I just assumed that the Coaguchek system was universal. I accepted the Venous Draw initially as time was not a problem, however, it became quite disruptive as I had obtained employment. The new practice only conducted INR's on a Thursday, sent the blood sample away that day and phoned the results to me the next day. As I was and still am stable on Warfarin I decided to 'go with the flow' and see what happened. By mid 2014 my working hours had increased and it was now becoming quite difficult to keep appointments.
At this point it needs to be said that for every Venous Draw reading that was taken I carried out my own reading with my own Coaguchek XS device as a cross check as to what was happening. The readings using the two different methodologies rarely produced the same result, however, there was always a very strong correlation. I also travelled to Australia and found the practice willing to prescribe me the Coaguchek XS test strips. I also have to say that twice – as a result – of using my Coaguchek device to cross check the Venous Draw method I had to contact my GP and ask for a review of the doses which to me seemed in error. Twice I got an apology and an amended dose. I put up with this arrangement until November 2014 when I was notified that my working hours would be increasing again in early 2015.
I contacted both my local GP and CCG, referred to NICE Guidelines DG14 and sought their blessing on using my Coaguchek device. Well, I got the run around from the CCG and after an initial contact from the Business Manager of my GP practice it all went dead quiet. Some 10 weeks have now passed.
I then did a search on the internet and found another GP practice in Hayle and telephoned them and asked if they had an INR Clinic which used the Coaguchek device. They did as it happened and I asked if I could register with them. I was invited to a meeting with a GP and the senior INR Nurse. Had a FAQ type discussion with them which seemed to focus on my history with Warfarin, why I was put on it, why didn't I switch to the NOAC's, what is the NICE recommended INR testing frequency, what are the benefits of self monitoring, what QC systems are in place in respect of using the Coaguchek device, and why did I want to register with their practice. Some time was also spent discussing my medical history and some time was spent discussing the concerns of the practice about users of the Coaguchek system, i.e. some patients using the Coaguchek XS system are obsessed with testing and were costing the practice a 'mint' by testing at needlessly frequent intervals. If I were one of those it may be cheaper for the practice to prescribe NOAC's. I stated that I am not one of those and in any case I would not use NOAC's as they have no antidote at this stage.
Eventually the GP agreed the practice would accept me, I was duly registered and it was agreed I'd stay on Warfarin. So now I am with a practice that operates exactly as my practice in Dorking, Surrey and I can return to living a relatively stress free life as I no longer have to present for Venous Draw INR blood tests. I have virtually all the freedoms I had before this bloody AF thingy hit me.
I was then passed over to the senior INR Nurse, with my Coaguchek device and with my records from the last two years of INR tests which she then entered into her computer system. We also cross checked the readings of the two Coaguchek devices, (her practice device and my own personal device) and the two gave exactly the same reading, using the same drop of blood. By good fortune the day all this occurred I was due for a INR blood test anyway, so everything was on schedule.
My next INR test is on 22 April and all I have to do is do my test at home, before going to work, phone it to the receptionist, confirm I have not missed any doses, or eaten 'forbidden fruit' (so to speak), the INR Nurse herself phones me back to confirm the reading and later rings me back with the result and next dose and confirms everything in writing by mail.
Then at every 10 tests I bring my own device in for a calibration check.
I was also taken on a journey through the repeat prescription process as it was significantly different to my previous Cornish practice and even compared to my previous Dorking, Surrey practice. That said, it is a much better process as I get the practice to manage my prescriptions on a 28 day basis and I just advise them those meds I do not want at the next prescription issue. Again – simples.
Apologies for the length of this, just thought some of you may be interested.
Just proves indeed that sometime we, the patients DO know how our own bodies work and react. Very interesting to read and definately gives me personally encouragement to ask more questions re my treatment!!
Thanks for that info, I have been on Venous Draw for 3 years now, and didn't not know about the DIY Coagucheck system. Off to look it up now, and see if I can change, I like the sound of the freedom it gives you. I hate being tied to the surgery every 6 weeks. Thanks Pat
Thank you for writing such a long story because it just highlights how old fashioned and set in their ways some surgeries can be - no thought for their patients just ' that's how we've always done it'. I had a similar battle with my GP to be prescribed Apixaban as I was told ' we only do warfarin here'. I wouldn't have been able to resist writing to the old practice once I'd left to offer some practical advice with a way forward to an efficiency drive! Well done you! I sometimes think these people don't realise we are intelligent enough to be able to manage simple tests at home but it's our health they are dealing with, not theirs so we're obviously going to do our best to get it right first time.
I hope all is well with your AF and INR levels and you enjoy living in such a beautiful part of our country. Jenny
I had similar experience and eventually found a GP practice that would accept self testing. Now I have been told that they are restricting the strips to 12 a year. Totally inadequate in my case as at present I have been told to test once s week. So back to weekly appointments with nurse using same machine I have at home. Plus a hefty cost for me when I go away. My EP doesn't want me on a NOAC yet.
So glad you got a resolution. Just a shame that it took so much work for you.
I think it is prudent to remember that every GP practice is an independent, private business and not employees of the NHS. The practice contracts with the NHS to treat patients and is paid by NHS according to the number of patients on their list and the services they provide. In rural areas, in a small practice there will not be the resources available to a larger practice in a suburban area so may explain some practices reluctance to prescribe testing strips if the CCG is reluctant to ok covering the cost.
The shame is that the informed patient who doesn't panic self testing and/or self treating are a minority, as far as some Doctors are concerned, but the future is bright as that wIll be the reality if the NHS is to survive. And we patients need training and education on our conditions and helped to understand the consequences of these choices.
The practical and psychological advantages of self management I believe are powerful but there are some who will want to remain dependent upon others to choose for them and they also need to be catered for.
This also means in effect we patients are customers of the GPs as without our numbers on our list, they don't receive income. If anything changes attitudes of stuck in the mud attitudes amongst GPS an exodus will!
Hi CDreamer - yep, sure has been a hike, but, home and dry now. To be honest if my Surrey practice hadn't used the Coaguchek system I would never have known about it, except for learning about it in forums like this. I got lucky at the time and had all my training and support in Dorking. I must say the relief I feel is great.
Welcome to Cornwall me dear! We de do things dreckly down 'ere! Well done you, My surgery used to use the venous draw method a while ago but had their own electronic gizmo that gave the result so that wasn't too bad. They have since changed to Coagchek but draw the line at self-testing. As far as I know they are not prepared to supply test strips on prescription. By and large I think I would prefer a Noac probably Rivaroxaban but Warfarin is the preferred drug; I suspect cost being the reason despite NICE guidelines as to its cost effectiveness. Thanks for the post John.
Hiya George, Had a good laugh at your opening line. Yeah, I keep forgetting about 'dreckly'. What are you playing in your picky - clarinet ? Acker Bilk ?
I run a local New Orleans style jazz band playing clarinet and sax. We are the Black Rock Jazz Band, we will be playing at Hayle (Smugglers Inn, St Erth Praze} on 3 May 1pm to 3.30 at the 51 Jazz Club of Cornwall.
Yes long. But lots of clarity for people. I self test for 6 months and use the med centre for the other 6 works fine. Machines say yes!pendeen will not prescribe strips! Herefordshire says no!
I test once a month as very stable inr.
Tip for newbies with the machine, call coags head office and get good advice, takes a few tries to get the hang of it. Warming the finger/ thumb helps
Also found (by wasting a few test strips) that it is sensitive if the surface is not level of has a slight down incline away from the Coaguchek.
Locally they will accept self testing but in my case because of intolerance to Warfarin I have to have weekly tests (by them). However because of the wide INR swings from week to week (even though no green veg or salad) I decided to buy my own tester to do in-between tests following my ablation 11 days ago due to the risks of a low INR. It dropped from 2.6 on Wed to 1.9 on Saturday. Very glad I bought it.
FYI I found out that by going onto the Roche website the Coaguchek was much cheaper than on Amazon and other websites. In addition you can buy it free of VAT Roche if you certify that you are on long term warfarin.
I live in Edinburgh and it is the same here some my practises does the inr checking me having to go every 4 weeks to the practises and others doing your system I was diagnoised in 2013 af and a hole in my heart which I had to have ohs surgery for last year they were going to put a pacemaker in when they done the surgery but changed there minds ,I seen my cardiologist in January I am in permanent af and now need a pacemaker the thought of another operation is hard to bare I wish they had done it when they done my open heart surgery
Hiya Grace, so sorry to read of your AF journey. I can only imagine how you feel at the thought of another op. Best wishes for great success when it happens - may the force be with you.
Well done mate, we spoke before as my area accepted ( at least partially ) self testing.
The problem was/is that here the authority were, I was told, afraid of the expense involved providing the strips would be too much unless they came up with a way to control the amount provided. Hence they will provide me with the same amount as would be used were I to continue coming to the surgery for tests as dictated by the computer. They phone me on the given day for my reading, then call me back to confirm dosage and when next reading due.
No mention has yet been made about monitoring my machine, although I have compared readings a couple of times since I got my own, but little victories a???
Ray
Yeah Ray, little victories all add up - more ways of killing a cat than choking it with cream.
That's very interesting John. Your long posts are always well worth the effort you put in. My surgery's system is Coaguchek every time, except venous draw for a few weeks (or longer) before ablation.
I haven't gone down the self testing route as yet and I have to make a decision on that as I was out of range yet again at my last INR test.
G'day Rellim, I actually didn't intend a long post but couldn't precis the story without loosing some value of it. Hope it helps somebody out there. Must say the feeling of freedom is great.
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