My GP states" there is no route or need for me to see a EP as my cardiologist is the expert in this field and as he has signed me off there is clearly no need" should I pay and go private or is there another option...I would just like peace of mind as to what is going on .....
How does one get an appointment with ... - Atrial Fibrillati...
How does one get an appointment with an EP
Written by
Steve112
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28 Replies
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BobDVolunteer
If you are in UK you have the right to be treated by whoever you wish. There is a list by area of EPs under patient information on the main AF Association website. Demand that you doctor refers you if you want.
Some people do spend about £200 to get a private appointment to speed things up but there should be no need.
You might think about a different GP if he is that base about things.
You can also go to CareAF website and read the guide lines for ongoing treatment.
Just tell your GP you wish to be referred. My cardio told me I did not require an EP, I complained to my GP, and he organised thru the same Cardio. You got to stand your ground here. Go armed with knowledge, and politely state you want to see the EP. You do not state, but I assume you are in AF with symptoms?
I am new to all this but I am gonna fight tooth and nail to get all the appointments with who I can to fight this. My cardiologist said the same as yours did Steve and I am taking no notice of him at all and going to see my GP about an EP - If I have wait months I will go private reluctantly. x x x
I didn't know about EPs until I joined this forum. My experience was very much that cardiologists are definitely NOT the specialists for AF and after I attended the AFA patient day a few years ago I then became much more assertive. I had an ablation within 6 weeks which unfortunately didn't work but a second a few months later did and have been AF free since. My only regret? Waiting 7 years before I banged on desks!
Yes you can book a private appointment but you need a referral letter from your GP but he/ she has no right to deny you that, as Bob says you have a right to be treated by whoever you want.
Thank you all very much for your comments my GP tonight flatly refused to refer me to an EP so basically I have a choice change my Gp and risk the same reply or go private..I was quite insistant but he was having none of it he stated "it's not an option" and keep taking the bisoprolol and so the wheel turns....
I echo all the replies above, it's your right and your GP must refer you.
I insisted on a referral letter. Firmly. The GP wrote something that was barely true (implying that there was nothing really wrong, that I was having minor palpitations not runs of AF like I was actually getting and said a cardiologist had discharged me already etc) but it was enough for me to phone up an EP (chosen by from the list on the AFA website) and book a private appointment. When I saw the EP, they listened to my symptoms, looked at all my medical data (when they finally got it) and put me straight in to their NHS clinic and waived the £150 consultation fee!!! The EP was pretty disgusted I hadn't been referred earlier. It took a lot of fighting to get my ecg and other results from previous tests sent through (GP said I'd need to get them from hospital, hospital said I'd need to go through GP....) but we got there (EP had to organise it in the end!). Since seeing the EP, my treatment's been reviewed and changed, I'm on medication to control the daily symptoms of my paroxysmal AF (GP wouldn't prescribe anything except suggesting antidepressants...) and I'm now back at work and feeling 100 times better. So all good. I'd say the cost of a private consultation is worth it - and you never know, it might not even be billed...
Waived the fee, what a dedicated professional!
Hi Steve, agree with all, you must see your EP to gather information and put your mind at rest. Mental Health is a key issue with AF and information improves things.
That said, I'll say again my cardio didn't want to refer me to 'his EP' (they have favoured links within the profession) as he said it was too early and we need to test the drugs first, adding if you go to a 'carpet salesman' you will buy a 'carpet' (an ablation). In this instance he was right, the EP was rushed, just said "ablation, 70% chance of success" and I didn't learn much more apart from a decision to postpone the procedure. The drugs and my lifestyle changes worked and I haven't had an episode now for 19 months.
Good Luck!
I'd actually be more concerned about complaining about the cardiologist. If you are in AF then bisoprolol is of little use. Tell your GP you are submitting a formal complaint about the cardiologist and you wish to be refered to a different hospital in the meantime. I suspect the mention of a complaints procedure will focus the GP's mind on keeping their own name out of it.
Bisoprol is a rate control medicine not a rthythm control and therefore I disagree that it is of little use. I am in persistent AF and take 7.5mg of bisoprolol and 125mcg of digoxin to help keep the rate down. I am not on anything for rthythm control.
Personally I would hold back from formally complaining or threatening to complain because it could have an adverse affect and you could be wrongly perceived as a trouble maker. Better to cajole.
If your AF is a regular pulse but at far too high a rate then bisoprolol may be enough, but if it is irregular as is often the case then I'm going to stick to my guns and state that bisoprolol is of little use as it is too lightweight a molecule to modulate ion flow at the cell boundary. Ideally a rhythm control drug should be prescribed, but alternatively there are some larger molecule beta blockers which can be of use. However of course both of these are more prone to side effects, especially of lowering blood pressure, so careful monitoring is needed when they are prescribed.
Thank you all again for your support and advice the trouble is my AF was discovered after I had a knee op I did not know I was in AF and did not feel unwell I was immediately sent to see a cardiologist who perscribed Warfarin then nothing no follow up nothing.. I had to plead with my Old GP to get a referral to the cardiologist to find out what was going on and do I need to continue the warfarin..I then had a 24 hr Holter and all came back fine He told me to stop the warfarin and start taking the bisoprolol again with no follow up nothing..my concern and why I wanted to see an EP was to get a more accurate assessment of what is going on.. My new GP in his 20s told me there was no route and no need to see a EP as my cardiologist is the best around and just keep taking the bisoprolol .....I am at a loss with the NHS I fully appreciate budget restraints etc etc etc but nobody seems to be interested..I feel fine no problems whatsoever and just concerned why I am taking pills for a problem that may never happen again..I feel very let down by these people and feel Private healthcare is the only option left for me just to get peace of mind from an expert in this field...
It may be that your local hospital is under-provided on the EP front and waiting lists are excessive, but if so your GP should refer you somewhere distant. However given the time, effort and grief involved a £200 private consultation is probably the sensible choice. Make sure you get a firm WRITTEN quote from the hospital first as I've seen them try to load on other costs.
You don't have to go to your local centre if you live in England. You can look at the list of EPs on the AFA website and look at where they are, their experience, specialities. You can also phone up the hospitals and ask what their waiting list is for appointments, investigations and ablations (all are different). You can also look on here. You need to look at where the EP does their NHS work and where they do their private consultations / work. Basically the more effort you put in to research the more you are likely to get out of it. The same goes for your research into AF itself. The more knowledge you have the better the questions you can ask your EP and the more informed the discussion.
I think that the sum of £200 is light in many cases There will obviously be the initial appointment, in very many cases some tests (eg echocardiogram is likely, stress tests, etc). Then you will have to have a further appointment to discuss the results and options forward. Generally the EPs secretary si teh best one to contact as often they are the ones to give you the costs for EP (they are normally payable directly to the EP not the hospital) and availability. The will also usually know the hospital's charges for the tests. Sometimes the EP (particularily if you are in persistent AF) will allow you to do the tests first and then the consultation which will save one consultation. Don't have access to my file at the moment but I think that echo was £250 to £275. If you are going down private route get your GP to arrange all the basic tests such as ECG(s), full blood tests. Key is to keep copies of everything YOURSELF every time. You can then send these to the EP in advance / take with you to the appointment.
Mike. You are, I believe confusing different conditions and medicines. I was told by EP that bisoprolol does NOT control rhythm at all, it only controls rate and a side efefct is to lower blood pressure slightly. Furthermore if someone is in AF then they have to have an abnormal pulse otherwise they would be in sinus rhythm. Medicines like flecainide, amiodarone, etc are rthythm control. However if someone has permanent or persistent AF then they (as I was) may be taken off any form of rate control as if it is not working at all or minimally working then the potential side affects of the medicines mean that the risks are higher than minimalistic or no benefits. The exception is sometimes in the month or so run up to an ablation and in the two or more months afterwards when amiodarone is sometimes prescribed to help hold in sinus rthythm after the ablation.
I totally agree and have stated that bisoprolol doesn't control rhythm which is where this all started. My statement was that if you have 'proper' AF with an irregular rhythm, and not just a racing heart which I have seen count as AF to some medics, then you need one of the rhythm control drugs you mention, and this will be for a long term until an ablation is performed.
I am not medically qualified but this is how I understand it. The key thing is the type of AF that someone has. If they are in persistent AF (particularly if severe AF) then many EPs will not prescribe rhythm medicines. Also applies to persistent. If someone is in Paroxysmal AF then they may very well be prescribed rhythm controlled medicines so as to prevent them going into AF as that considerably improves the chances of an ablation working.
Yes I agree this lack of williness to prescribe rhythm drugs seems to be the case, as it was what I met. I forced an unwilling consultant in A&E to give me dromedarone to try, and then also tried sotalol despite it being on the NICE non-recommended list, but both caused massive drops in my blood pressure. I can't take flecidinide because of my asthma and had already had a bad reaction to aminodarone after my heart bypass.
Oddly I did find the calcium blocker verapamil worked well in controlling the AF and even found a paper from Italy correlating to this, but it seems to be not a recognised route.
But in any case the EP recognised nothing was working and so recommended I have a cryro-ablation and, touch wood, I have been in perfect health ever since.
In my case I was actually on flecainide at the time I had the cardioversion and the EP took me off it. There was no reluctance for him to prescribe a rhythm control drug per se just that he saw no benefit and only risks. He did not want to prescribe me amioderone at that point until it was close to my ablation. I was due to start 1 month before but in the event did not because simavastatin had sent my liver function significantly out of range.
NICE protocol (fairly new) is that if two drug regimes have failed you should be referred to an EP, in my case it was Propafenone alone followed by Propafenone and Diltiazem, the Diltiazem caused other problems as a result of which I was referred to EP who strongly recommended ablation for AF and Flutter without even seeing me!
My GP was totally useless, told me I could have a CV any time, stonewalled me when I complained about side effects and only came to life after a year when I was able to show her an Alivecor trace with 5 second pauses! Then I waited 2 months to see the cardiologist who quoted her rather half-hearted letter to me......
Sorry for rant, what I am saying is GPs/cardiologists either don't know the 'rules', know them and follow to the letter or know them but make decisions based on their own assessment of need. So I think it would be helpful if anyone wanting to see an EP could find out which category their situation falls into.
I fully understand the wish to 'know what is going on' but I can also see the GPs side if faced with an ever growing queue of people with AF. Only you can decide if you are 'entitled' to a consultation or want one for 'peace of mind' which is a very important aim and I don't belittle it for a moment. Best wishes whatever you decide.
I completely agree with Mike, the inexperience of the cardiologist is the problem and the GP is even less experienced. Look up the names of cardiologists who have a particular interest or specialism in AF and politely ask your GP to refer you to one of them. Say you feel your previous cardiologist has not been thorough enough. A knowledgeable cardiologist will then refer you to an EP. In 2007 I was discharged from my original cardiologist as being 'oversensitive to the rhythms of my heart.' A week later I had a massive AF episode lasting several days. One of the paramedics called to my aid in the street suggested I was having a panic attack! It took another year before I was diagnosed with AF and A Flutter and only after I had requested to be re-referred. Frustratingly, AF is still in its infancy with regard to general knowledge and diagnosis among professionals and therefore relies heavily upon us to convey the severity of our symptoms and the urgency in which we need to be helped. I have lost count of the multiple times I have been in an obvious state of difficulty and yet encountered ignorance/arrogance among some cardiologists, junior doctors, GP's and nurses. My very wise daughter advised me "If they aren't listening to you mum, then you need to be speaking to someone else who will," All the best.
For the benefit of newer members EPs are a relatively new branch of specialists and knowledge and information has changed significantly in recent years. Catheter ablations were only first performed in 1999 !!!!! Modern technology has helped EPs understanding but as you will ahve heard many times AF is a mongrel affliction. It is not the fault of GPs but those who qualified 30 years ago will only have minimimal knowledge from their training unless they ahve kept continually up to date - and it is totally unrealistic to expect a GP to keep up to date on all areas of medicine - that is why they are GPs. Three months ago my GP had a student and she said to the student that I had permanent AF and she also quite happily stated that I knew far more about AF than she did. I did correct her that I was still in persistent AF.
Having now considered all options have any member used SCVC based in Guildford Surrey they seem to offer several levels of assessment and this could be my best way forward....
Steve - RosyG runs a support group in Surrey - Surrey ASG - (Arrythmia Support Group - they meet at Epsom Hospital and they post the talks on YouTube - may be PM her for advice? Search Surrey ASG on YouTube.
Also don't hesitate to ring the AFA they are brill and so helpful when you meet resistance from GPs as to how and what to say. Personally I think you need your GP on your side - if your GP is inexperienced may I suggest you do your research and then from that draw up a list of very detailed questions. And let him know that you are an informed patient not to be fobbed off. May I also suggest that you book a double appointment so that your GP can spend the time talking with you.
The questions you ask are legitimate and it may be you never have another AF episode, but it is rare as AF tends to be progressive. You may choose to not to take any treatment, other than anticoagulants if the AF is not symptomatic for you at this time, lots of people live with AF and a lot of people start with 1 episode, then have nothing for years. Episodes then become more frequent and when they become troublesome may be the time to think about treatment - however this is something you need to have an informed dialogue with an educated and experienced person who has good up to date knowledge of AF - sounds like that hasn't happened nor is likely to unless you go privately.
Best of luck.
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