What now?

Having had ablation cancelled at last minute due to bed shortages and ep deciding I need to be on anti coags I went to see my gp this morn to write me up the prescription. Gp turned round and hit the roof I was going to have an ablation, said I shouldnt be on anti coags and to stop taking flec, she reckons im fit and healthy in nsr and that there is no evidence in my case notes to build a case for af and to have an ablation. There was 1 ecg that had af on it last year, had several episodes of palpitations past 12 months. Since taking flec daily though they have stopped. What do I do? Listen to my gp and stop the flec? I will be honest and say I was surprised the ablation was being done off 1 ecg that I did myself at work. All symptoms I have though do point to paf? What next?

23 Replies

  • Your GP is not the most trained of individuals where AF is concerned. Your EP is the specialist. She is not. You do the Maths as they say. I know who I would trust but do talk to your EP about the future. You may not be having AF due to the drugs you are taking. Why not try a period without and see what happens.

    I suspect that she is worried about the impact on her CCG costs which is understandable to be honest so maybe time to play both sides against the middle.


  • Bob, thanks for the prompt reply and of course it makes perfect sense. I have always had a lingering doubt in the back of my mind that even though it all pointed to af and I believe its on 1 ecg that was this enough to proceed? I have had approx 9 episodes of what I believe is af each lasting 12 hours plus at a time. I just cant ignore what she just said to me in that the ablation seemed a big unnecessary procedure. I really put my money on this being the way forward and got mentally prepared. Do I come off the flec to go into af to then go to a&e for a piece of evidence?

  • The usual route is have diagnosis confirmed on a professional 12 lead ECG trace - I got mine from my GP surgery. Holter ECG followed - after referral to cardiac unit - saw a cardiologist - took drugs - drugs stopped working - went had ablation which thankfully worked.

    In my view about 6 wasted years - but then I didn't know better until I came onto this site and attended patients day - my GP did and got very upset with the local cardiology dept and asked if I could go privately - which I then did - ablation 2 weeks later as ablation was not available through NHS in my area as there was no EP, though it is now as a fantastic EP in post.

    If you have such long episodes - go to your nearest ECG machine when in episode and go back to your GP and ask for a holter - our surgery have about 6 machines - all in constant use.

  • It does not matter that there is no EP in your area - that is true for many parts of the country including areas around London. You can have it on NHS. I know this is of no use to you.

  • I would argue that it does matter because without that expertise in the locality latest thinking and expertise does not filter through to other doctors within cardiology and GPs.

    In my humble opinion, some of the best work our recently appointed EP has been educational to colleagues and public and campaigning and arguing for resources to perform ablations as a cost saving measure.

    Where the ablation is performed may also be important as not everyone has the resources to travel 250 miles to the nearest Centre offering ablations and the support available post ablation.

    Yes ablations may be available on the NHS but I would still have had travel to London and indeed this is still currently the situation in the SW.

  • What about Bristol?

  • My information was that at the time of writing my post Bristol had closed it's list to those outside their catchment area.

    I don't know the up to date situation.

  • Hi! Jimmysouthgates.

    This is what gets me sometimes about the NHS. The inability of people to talk to each other. Some people are very good but occasionally you get two medical people with differing opinions. The patient is caught between them. You are left between the rock and a hard place. This should not be.

    You deserve the best treatment.

    If you are saying that one is as convinced as the other I would be inclined to test the system (as Bob says). You want the best solution.

    I found the AF Association very helpful here with their expert advisor's in the background. A 'phone call to them or an email explaining as simply as you have to us would be a good start with your contact details.

    The other direction to go in is PALS (Patient Advice and Liaison Service) at your Hospital, or the PALS service serving a group of hospitals. A 'phone call to the hospital switchboard will direct you. Again something in writing would help them if you establish the person and the address to write to. Being polite and persistent is really helpful with those light 'boots'.

    I have been forced to use PALS and the AFA together. I can only say that rapid progress was the result. The hospital really wants to help but don't always realise that they have a problem. Communication systems between primary, secondary and hospital departmental care are not always what they should be so you have to help the system along.

    Check out the "WHICH" for November 2015, page 20 and you will see what I mean. Worth a read for all is that.

    If you are involved with several Departments then when dropping a note to one you send a copy to the others involved. It's not difficult and "they" are not Gods. They are human like thee and me. Go for Gold!

    Cheers, Dave.

  • Not sure how this works in UK, but my first cardiologist was well-meaning but using old guidelines. He, too, had the idea that I had not had enough documented episodes and could just take aspirin. The 2nd cardiologist had a completely different approach using 2014 international guidelines.

  • If it were me, if the flec works I would be inclined to stick with that for now. At some point in the future it might stop working, then consider whether it's worth having an ablation. Ablation techniques are improving all the time, so there is an advantage in deferring.

    Your EP sounds a bit gung-ho. Has he done a lot of ablations (i.e. several hundred)? If not maybe let him practice on someone else.

    Can you work out your own CHADS2VASC score? (you can google it). One or more then anti-coags are advisable.

  • If you are having prolonged episodes of AF then I would have thought anticoags would be a good insurance against stroke risk- regardless of whether or not you consider an ablation.

  • This is very strange! How did your GP not know about your AF and your progress towards an ablation? Did you consult someone privately without any discussion with her, and did your EP not send her copies of his letters to you? Having said that, I have not had a letter from my EP, only a phone conversation so I suspect some are a bit maverick - I had no proof I was on the list for ablation and now I've had to change EPs I'm interested to see if I get a letter from the next one!

  • The other gp referred me who has now retired. Im seeing the ep on the 17th I just want him to show me the evidence of the af and to hear him say this is good enough. I can accept the diagnosis as been living with it for a year. I must say though im starting to shy away from an ablation because the flec isworking for me. She really convinced me agaisnt It

  • My husband has a saying which I usually think of in relation to buying a dress, 'If in doubt, don't.' But in this case you are faced with two very opposite views, so you need to be convinced by your EP and if you are I should ask him to convince your GP because some cooperation will be needed!

    Good luck, interested to hear what the outcome is.

  • I am 61 and in persistent AF and have no medical training.

    At the beginning of my formal AF journey over a year ago (and I was very much lacking in knowledge at that point) my GP said that an option of an ablation that removes the necessity of taking drugs long term was a serious one to look at but that anticoagulation might be desirable long term but not guaranteed.

    Flecainide is working for you now now but is it just masking for the long term. As has been stated many times AF begets AF. In addition the statistics show that the success rate if in paroxsymal AF are much higher than if in persistent AF. First time it is double, though the gap narrows significantly after multiple ablations.

    There may be maverick EPs out there but equally not. If you are on NHS, which is what you imply, then EP has no benefit from being maverick and putting people through an ablation unnecessarily because there are plenty of people out here for an ablation - hence why waiting lists are so long!!!!! Also you can bet your life that his hospital has not given him a free hand spending!!!

    As to GP how much knowledge and experience does she really have? Her persona and background may be very conservative indeed. She may or may not be opposed to any interventions unless critical. If she qualified a few years back then AF ablations may not have even figured in her training - the first one was only in late 90s. Even now I understand that on some medical courses the training is minimal.

    GPs are by their title general practitioners and it is impossible for them to be experts in all the given areas and specialities in medicine as it stands today. Many GPs may develop special interests in one or two areas but even then they cannot know as much as an EP who is working with arithmyia son a full time basis!!!!

    I know whose side I would err down on the side of but it is for you to decide (and a decision that is not easy). Personally I would not accept her word without insisting on seeing another EP and discussing in depth with both EPs. You are entitled to a second opinion. I would see an EP who is in a different hospital - use the AFA website to track down. I would also want to be at a teaching hospital (I am) rather than a hospital with one EP. I would also want a level headed discussion with her and not one where she went up the wall. You could also get a second GP opinion.

    I had not intended for this to be anywhere near as long but it ended up so because there are so many issues here. Use us folks as sounding boards!!

  • Jimmy, it's all in the title GP = general practitioner, someone who knows a little about everything. EP = electro physiologist, who is a specialist in his field. I had the same as you, EP wanted me on warfarin, bisop and flecincide, the GP refused point blank, said it wasn't necessary for "palpitations". I changed my surgery and within 48 hours was on all prescribed meds in the run up to my ablation and for 3 months after when I changed to just Rivoroxaban. Eighteen months later I'm about to change back to warfarin prior to my 2nd ablation because the EP prefers warfain for ablation. Go for it Jimmy, change your doctor and don't let this mongrel condition corner you before you have to have the procedure.

  • My Cardiologist and my husband who is a medic also are on the cautious side if the medication works stick with it! You can have too many Eletroconverdions and too many Abaltions,they often roll their eyes when reading some of these letters!

  • I would have to disagree, yes medication can work for a time but is taking a very toxic drug long term really being more cautious than having an ablation? Personally I don't think so.

    If you are symptomatic to the extent that it interferes with your QOL to such an extent that you have to give up enjoying life, which many of us have experienced, then maybe your cardiologist and husband would not be quite so dismissive.

  • As usual it so much depends on the individual and their reaction to the particular drugs. It is so variable from person to person and for each individual from time to time. With the drugs they were extensively tested on their own prior to release but often limited experience of interactions with other drugs. Obviously as time progresses that knowledge increases.

    When discussing with my GP a year ago she was of the opinion that anything (in this case an ablation) that means that someone doesn't need to take drugs for years and years has to be a significant consideration. Also AF will get worse in time but rate of decline is unknown and is individual. At the end of the day do some people want to be on medication for AF for 30 or 40 years - yes new medications will come to the market in that time.

    I have to endorse what CDreamer says in particular QoL. I hate to think what I would be feeling like now if I hadn't had my first ablation at the end of March even though I lasted less than 72 hours in NSR before going back to persistent AF. There are a number of aspects that are improved now as opposed to before. Current thinking is that people are much better to have it earlier when in paroxsymal AF rather than being in persistent AF and the success rates higher for those in paroxsymal AF. There is no perfect solution nor one case fits all.

  • You have to be your own doctor. If the AF doesn't bother you too much, don't take flecainide. It suppresses the brain's autoimmune system and can have some pretty nasty - and permanent - side effects (but if you're doing OK on it, never mind).

    You definitely should be on an anticoagulant. It takes but a moment for a clot to form. The consequences are non-habit-forming.

    It sounds like you're getting medical advice from opposite ends of the knowledge/enthusiasm spectrum. Keep doing research, keep notes on your experience, and make your own informed decision.

  • Thankyou all for your input, the debate is giving me alot of points to consider. I think by moving slowly through this decision considering and listening to all of your personal experiences good and bad the route taken will be right for me. Pls keep posting its generating aspects I hadnt considered. Regards Jimmy

  • Is one ECG with af on it enough? As aforementioned it has occured numerous other times but wasnt caught on an ecg?

  • 1 12 lead ECG printed and saved on an NHS ECG monitor should be enough for a diagnosis but it is not a bad thing to have several recordings, so I went down to my GP surgery to get an ECG every time I went into AF for the more that is observed and documented by medical staff, in my view, the better as you are taken far more seriously. And the intensity and the period you are in AF will vary, as will the symptoms. Keep a careful diary of your symptoms and if you do record on a ECG gadget keep printouts so you produce them at your consultations.

    All medicine is evidence based so the more evidence you can collect and produce and document the more your consultant can advise and together you can work out the best treatment plan for you - which may change over time.

    Best Wishes - CD

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