I have Atrial Fibrillation and Atrial Flutter, which to my knowledge started March 2014, when I was admitted to A & E by ambulance.
I have been on a very steep learning curve since then, and have had to deal with several unhelpful/disinterested GP's, clerical errors by surgery , lost referrals etc. In November last year, with a lot of effort on my part, and with the advice and support of many of you on here, I did get to see a registrar at the local hospital Cardiology dept. After several more appointments for tests etc., I received a letter from him recommending anticoagulant and medication for high BP- before I could act on this I received another letter-typed the very next day (and with no reference to the previous one) telling me my BP is ok and no anti coagulant medication needed!
Anyway, long story short, I have now seen an EP who visits Ipswich Hospital from Papworth, and he has put me on his list for ablation.
His waiting list is approx. 3 to 4 months and I have to be on an anticoagulant for 3 months prior to the ablation.
I live a somewhat 'gypsy' lifestyle, staying 2 or 3 different nights a week at my daughter's livery yard. I go off at short notice to deliver horses and work at other yards, and I house and pet sit at various places. I always eat breakfast, but may not then eat until late evening, or I eat on the road or on the run, which may or may not be 'healthy' food. I have researched the anticoagulants and I feel that all this plus frequent appointments for testing INR on Warfarin mean that one of the NOAC's would probably suit me better, especially as it is hopefully for such a short time leading up to the ablation.
My EP is happy for me to be on one of the NOAC's, his preferred one is Rivaroxaban, and he said he will suggest it in his letter to my GP. As I left the appointment he said 'Good luck with getting them to prescribe it though!'
So... it seems I need to be ready for a battle! I have read the NICE guidelines -tho I don't retain the information very well - but in a nutshell could any of you wise and experienced folk tell me how I go about presenting my case if, as I suspect, I am met with a GP who only wants to prescribe Warfarin? What are the most important points that I need to make?
Thank you all in advance for your help.
Angie.
Written by
angiek
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Print off the NICE guidelines and highlight those points that you think support your case. Write something down for your GP - much as above, emphasising your lifestyle and how you would find it difficult to manage regular meals and fitting in testing. Check with the website for your local Clinical Commissioning Group (CCG). they should have a written anticoagulation policy, which you could again print off. Put it all together and have a discussion with your GP. If you feel the conversation isn't going your way, produce the file and say something like "this is what I've found out. I know you are busy, so I'll leave this with you".
Is there someone at the GP's e.g. A nurse, who you could sound out beforehand about local policy? I did this with our Practice Nurse and the information was that my GP would be supportive but that others in the practice were not.
Thanks to a suggestion from Mrspat (for which, again, many thanks) I contacted my my CCG a while ago. They were most helpful and emailed me various guidelines - their own Warfarin document and two self testing documents from another areas. One was 44 pages of not very exciting reading, but between some very dull lines there was a lot to learn.
Why not also gain some information from your local pharmacies about who prescribes Rivaroxaban.
Well, I think it might be more a matter of finding out whether a drug is being prescribed locally. I know apixaban was not on the dispensing merry-go-round in two of my local pharmacies, for example, when I asked about it. It may be now.
Thank you. How local are CCG's - for example do they cover single towns and their associated villages or are they county organisations, or part of Health Authorities?
I think it will vary, according to the number of people and GP services in a particular area. Mine, for example, is West Kent, which covers more than one town and several villages and all the GP surgeries in that geographical area. They used to be known as Primary Care Trust (PCT).
I found the Warfarin routine of checks and phone calls a real nuisance - not to mention having to watch vitamin K intake. So opted out and took Aspirin. However, I had n early letter from EP who said Aspirin was acceptable, but please take anticoagulants when I reached 75. In view of the fact that the effectivness of Aspirin is now in doubt, and that I had reached the 75+ age group I went to see the friendliest of our GP group, armed with all the literature I could lay my hands on. We talked it over and although she didn't agree with my feelings about Warfarin she was fair enough to offer to write to my EP and ask advice. She said no-one else in the practice was on Rivaroxaban, and how her colleagues might object on the grounds of expense. Anyhow, the EP replied that Rivaroxaban was what he would recommend and on that basis I have been granted my prescriptions.
So good luck with your request. Stick to your guns!
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