Great job AF Association, by the way and thanks for the support you give to us all.
I attended the annual Patients' Day at the ICC in October and came away with a firm commitment to seek blood thinning at the earliest opportunity. By way f some background, I am 53 and have suffered with paroxysmal AF since my early teens. I've had 5 episodes where I have needed hospital attention, two of which were for cardioversion and the remainder involved high doses of Flecainide to correct my rhythm.
The message of the conference was very much that we all require thinning. Dr Nick made a very strong presentation about this and also the EP guy Faisel. I duly made an appointment with my GP, who referred me on to the surgery's Anticoagulation specialist. I finally had my appointment with her recently and she has refused to prescribe. To begin with, she listened and appeared to understand my fears that I am a stroke time-bomb waiting to go off. However, she then explained to me how my CHADSVasc score was still effectively zero and that she would not advise. I went on to say that 'zero' is a relative term. I may not be over 65 and may not be suffering hypertension, but at 53 I am a lot closer to 65 than when I had my first cardioversion at 23 and I do have periods where my BP can be 145/85...... I also said that the reality is that one's score doesn't resolutely stick at zero till midnight on our 65th birthday, so it must be regarded as a gradual descent into needing medication, as opposed to a one-day switchover.
She said that the scores were there to acknowledge the fact that the stroke risk rises with age. I asked her specifically why the risk should be higher at >65 than before, assuming no hypertension or other factors had changed and she could not answer. I then reasoned that this might well be simply a recognition of the fact that older people had been in AF for longer than younger ones and it might just be the length of time AF had been prevalent that was the factor that increased the score at 65. She couldn't answer this either and then changed her tune to saying NICE simply doesn't permit her to prescribe NOAC's to someone with a score of zero and that her hands were tied.
I very much feel that this last claim is BS and that she had decided for whatever reason that she was not going to prescribe as the risks of bleeds exceeded those of stroke. However, I happily tolerated aspirin for over 25 years with no issues, so don't feel that I am a 'bleeder'. I still have that time-bomb feeling and worry daily, particularly after Nick and Faisel's comments at the ICC and I don't know where to go from here. I think the medical community is not at all used to people who have had AF so early in life and their guidelines and conventions make no real allowance for us.
I'm not the happiest of campers right now...
Any thoughts or suggestions along the lines of how to pursue this or indeed whether what they are telling me is sound and safe would be gratefully received and thanks in advance, as ever.
Sam.
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sfh3l
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Interesting question Sam and please anticoagulants not blood thinners as the don't. And why aspirin all these years as I'm sure you remember hearing that aspirin is about as useful as a chocolate tea pot where AF is concerned? In fact it can cause harm rather than help as we know.
The CHADSVASC system is a guide to when anticoagulation should be prescribed but it is not a gospel to be followed strictly and NICE do not say you can't be given anticoagulation until you are 65 . That as you surmise is BS.
The point is that amongst the AF community there is a strong belief that AF should mean anticoagulation regardless of age but sadly this is not currently laid down in law. In fact had you attended HRC a few years ago you would have heard another consultant explain why we use the system as we do . I'm not sure if it is still currently available but there used to be a publication "A Patient's Guide to Anticoagulation", I think on the CARE AF site, which explained the thinking. It gave a chart of risk numbers and for example for every x number of patients with AF given anticoagulation y would have a serious bleed, z may die from it whilst only k may have strokes. This sliding scale changes with age. The presenter did say that if he prescribed for everybody with AF regardless of Chadsvasc score he knew he would kill several people.
That said there is no doubt that UK in general is not very good at ensuring that all at risk patients are anticoagulated for stroke prevention and probably ten years ago we were second from bottom of the list of European countries by results in this respect. I'm not aware of any new numbers but back then it was estimated that we could save 8000 serious life changing strokes if this was changed.
I have to say Sam that you are probably in a small minority in wanting to be anticoagulated as most people come here complaining that they do NOT want to take these drugs but to some extent I'm on your team here. I was told I could stop warfarin after my first ablation but chose not to which worked very much in my favour when I needed a cardioversion.
My advice here is to ask for a referral to an EP, where you can discuss possible ablation and at the same time explain your fears and see what they say.
I do have to say that whilst I am in favour of anticoagulation I do think that you are probably at quite low risk right now so there is plenty of time to sort this out.
The refusal to prescribe an anticoagulant may also relate to cost and hence the comment by NICE. I remember seeing the cost to the NHS a couple of years ago: the annual cost per patient was £10 for Warfarin and £610 for Pradaxa (dabigatran). I suspect most of us would prefer not to be on Warfarin due to the requirements of eating and drinking. As to risk, I was assessed at 1% purely by age, mitigated by my regular cardio exercise and, therefore not in need of an anticoagulant. Eighteen months later I had a stroke that has left it's mark.
Those prices don't take into account the cost of frequent testing of people on Warfarin. With so many more people presenting with AF, and needing anti-coagulants, practices cannot provide the staff for all the testing required. This means NOACs become much more cost effective and hence the preferred option.
True up to a point ....... but self testing of INR with Warfarin patients makes it - in a cost sense - still very cost effective. In that way, the patient assumes full responsibility themselves to test and the INR clinic simply sorts out the new dose and the next test date. The surgery then just prescribes new test strips.
Further, why should potential stroke victims be treated differently to diabetics ? Same thing - different type of test strip and testing device.
I am on Warfarin and eat and drink what I want. I bought my own Coaguchek meter so can test myself when I want. From time to time I email my test results to the arrhythmia nurse.
If I were you,I'd email Proff. Faziel Osman,he is very approachable ( my EP in fact) you could also ask to get referred to him through the NHS or pay 175.00 to see him privately at the BMI hospital on site at UHCW (Walsgrave hospital)
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