I don't see a way past my GP without getting a private referral to see an EP which would cost a lot of money for possibly being told nothing I don't already know. My GP thinks he has all the answers and has told be the list of drugs he can prescribe if I ever think I need to do more. Thing is, I'd just like to talk to somebody who is an authority on the condition, and I really don't think my GP knows any more than I do about it, especially as I've probably done more reading than him on the subject.
So many people on here talk about consultations with their EPs. Are these private or are you getting referred by your GPs? If that latter, how do you go about that?
I did see a EP a few years ago when I had private health insurance, but that wouldn't cost the NHS anything and so they were probably more than happy to go along with that. Now, I no longer have health insurance, I feel I won't be referred because it will cost the practice money and they feel my AF is under control enough not to warrant it.
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Alan_G
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NICE guidelines are such that you do have the right to see an arrhythmia specialist. That can be an arrythmia nurse specialist, a cardiologist or an EP if you GP can not control your symptoms. There are many drugs such a flecainide which a GP MAY NOTprescribe. Why not go to NICE website and down load the necessary guidelines to wave under his/her nose. or contact the office (AF Association) for advice.
Hi Alan, as you have given no history I had a look at your previous posts. It seems you have short episodes of PAF which don't affect your QOL much and don't take any meds beside anticoagulant? So I can understand why your GP wouldn't refer you to a cardiologist who would refer you to an EP if he thought it would be useful. If you want to make a case for being referred I suggest you make a list of questions you'd like answered and tell the GP that you'd like a second opinion on his statement that your AF will become permanent. Good luck!
I don't believe he was talking about me personally. I got the impression that he thinks paroxysmal will always become permanent eventually, whoever you are, and he may well be right. It's a chronic condition and so I guess will continue to get worse over time, however long that may be.
I think I would want to know your GP’s credentials on his cardiac/arrythmia experience & know how up to date he is. My 1st GP was an ex cardiologist so I had faith in his opinion - which was it’s treatable - see an EP ASAP.
I would also suggest you visit the AFA website & look at treatment options & then go back to your GP.
I did see an EP about 6 years ago and he just summarised by saying I was a good candidate for an ablation but as I was not suffering any QOL issues, then there was no hurry. I feel I'm in the same position and am wary about spending £200 or so to be told the same thing. My QOL is no worse than it was back then. Better, in fact, because I cope with the episodes now much better than I did back then.
Makes no difference, question is, are you happy about possibly going into permanent AF or not? If not, then you should see an EP sooner rather than later. And that story about your GP being able to prescribe more effective meds is nonsense too, he can't prescribe antiarrhythmics - you need a cardiologist for that at least. I can understand that with the other medical concern in your life you may feel you would rather defer the heart problem but as you've asked we're giving you opinions based on our experience.
My other medical concern has been sorted and so hopefully will no longer be a concern, although nothing's ever certain, and so my main focus at the moment is making sure I control my AF.
Another more economical option might be to have a Skype session or telephone conversation with Dr Sanjay Gupta who has a special interest in arrythmias. He is based in York . These sessions are not free but at least you would get advice on your particular situation
He has many YouTube videos and a facebook pagealso called York Cardiology
I think that sounds a good option. I'm wondering if I could first send him an email stating my position and what questions I have. Then, if he feels he has something to offer I could take it from there.
He's very approachable but of course has to earn a living so he may suggest you pay for a 30 minute call which I hope will help. I had one consult over 2 years ago as I had been discharged from a cardiologists care for years and needed reassurance. It was well worth it even though nothing new was necessary
I'll just add my personal opinion. GP's cover many areas and don't specialise with a-fib. They are there to diagnose an illness and to refer it to a specialist if it could be serious. If not they can give treatment options.
From my experience doctors are not trained to deal with the serious issues concerning the heart. Nor should they be - it's not possible. Doctors do a great job but can't be expected to specialise in all aspects of health care and have the answer to everything.
A cardiologist or EP will be your man. An EP has two years extra training on top of an cardiologist. You could say he's the guy in the know - it's all he does dealing with irregular heart beats. However a cardiologist is also highly trained and knows his onions.
My advice is this. Book the private consultation with a cardiologist or EP close to where you live - you'll see him / her within 48 hours. Explain when you see them you don't have private health insurance and want to go through the NHS if needs be. If they think there's a problem that's needs dealing with you'll likely be referred there and then.
It's a way of jumping the queue - not fair I know but welcome to the NHS. Cost will be about £250 for the first consultation.
Maybe to put your mind at ease it's worth paying for.
Okay, thanks for the advice, and that goes for everybody who has replied. Basically, my situation went, almost overnight, from having 1 episode every few months, to having one every couple of weeks or so. But on the good side, they are less noticeable, and don't last as long. I was after answers about why this was which the GP obviously couldn't give. As I tend to get these during the night and I am back in NSR early morning usually, I'm seen as a non urgent case in the grand scheme of things. It was more curiosity than concern I wanted some answers for, and so I guess I'll leave it until such time my situation changes again.
If your episodes are increasing from every few months to every few weeks then somethings not quite right. You wrote
...But on the good side, they are less noticeable, and don't last as long...
If a-fib is kicking in and out on a regular basis you might not notice it as much - your body adjusts and the effects are not felt as severely. However you still have a-fib.
I really think you should make an appointment with your GP and insist on a referral. Do you have a monitor were you can make a print out - a Kardia or the likes if you go in to a-fib ?
One final thought. If your attacks are only happening at night is a trigger there ? It could be having a beer before you go to bed / eating a big meal before you go to bed / even your sleeping position.
Look for a trigger - if you wake up in sinus there could be something just before you sleep or during sleeping. Have you been tested for sleep apnea ? It might be a trigger for you ?
I'm aware of all my known triggers and do my best to avoid them. Big meals and too much alcohol are among them. I'm very wary of my sleeping position as well. I usually start by sitting up, and if I don't go to sleep that way, I make sure I only sleep on my right side. I don't think I have sleep apnea. Maybe I should invest in a monitor. The only event to coincide with the change in frequency of my episodes was having 3 weeks radiotherapy on my chest wall. They said the heart would not be affected by it, but I do wonder. I've also started taking Tamoxifen as well and my GP did say it has been known to cause palpitations and so maybe that is having an effect. It's questions like these that I'd feel more confident having an EP answer. That said, when I saw one about 6 years ago on my private health he didn't tell me anything I didn't already know and just summarised by saying I was a good candidate for an ablation. If I'd paid circa £200 for the consultation, I would have been very disappointed.
Might I just add as I do like to get on my soap box about sleep apnea, three different doctors and consultants didn't even think about testing me for SA and yet someone on this site suggested I did , and low and behold when I really pushed for the test I was having 68 episodes an hour .My new cardiologist was angry at it being missed and suggested it was the cause of my AF. It seems if you are about the right weight and BMI then SA is ignored. Good luck.
This was 6 years ago - maybe you are still a candidate for one ? This of course a personal decision for YOU and your doctor to make.
Alan wrote
...I don't think I have sleep apnea...
Why not have it checked out ? It's maybe not the cause (who knows) but at least it's another thing removed from the list of 'could be a trigger'.
Tamoxifen ? I'm unable to give advice about that - I don't have any medical qualifications. I'll just mention one thing though to discuss with your doc. Do you just take it at night or in the morning as well ?
If it's just at night then it could be the trigger. If so I would discuss with your doctor about splitting the dose over the day perhaps. It's just something to talk to your GP about if that's the case - but only do it if your doc say it's OK.
I'm going to add one more thing while I'm at it The longer you leave an ablation the less likely it is to be to be successful. Sooner is better than later in this case.
If you do decide to go down that route I suggest talking to an EP or cardio soon. Personally I would ask to be referred by your GP. Does your surgery have more than one GP ? Maybe ask to see another doctor if so. Second opinion and all that.
I can understand you being disappointed with your last EP's appointment if you were paying. However if you have piece of mind it's worth it in my book. At least you'll either have some closure or know what's what. An expert will have had a butchers and be able to tell you the next step.
Final thing. If you do decide to go private, write down a list of questions you want to ask. It's easy to forget everything you went there in the first place to find out - pull out a note pad and write down all the important questions you want the answers to.
I've done it in the past - I've come away from the appointment and remember all the questions I didn't ask. I couldn't remember the answers to the ones I did ask
Thanks again for the reply. Just one more thing to add. I've seen a few articles recently in my wanderings comparing chemical treatment to ablations and I definitely got the feeling there was a case for chemical treatment ahead of ablations. I cannot remember all the arguments involved, but ablations didn't come out of it very well compared to the chemical solution.
Some people swear by ablations - some prefer med's. I think it's a personal choice you must make after doing your own research.
For me personally ? I'm sticking with med's for now. I would however go down the ablation route if needs must. It's a moot point at the moment as far as I'm concerned.
I could be totally wrong about my next point. I think ablations will be a thing of the past in time to come (sooner rather than later). There will be new , and far better, treatments available soon. I'm young enough to hang on a while to wait and see (only just).
However if my a-fib really started to kick in again soon, I would (most likely) go down the ablation route.
It was a couple of years ago when I saw the article, but there was research, in Germany, I think, whereby the heart could be 'fixed' from the outside without the invasive procedure. It wasn't xrays but a similar technology whereby some like beams were aimed at the heart area.
I'm not so sure Alan - I don't doubt for a minute what you are saying though and you have read this online. However a-fib cannot be fixed as such. There is no 'cure' at the moment.
It can be controlled to a certain extent but that's as far as it goes at this moment in time. If you research the internet always check the source - medical journals are always a good starting point.
I always find this 'cure' subject rather vexing - I have PAF and so do my sisters, but diagnosed in old age. However, 15 years ago, my son who is a competitive canoeist (he is 50 now - has been paddling since he was 17) and this group of sportsmen are among the highest incidence of young people with AF. was diagnosed by a fellow canoeist who is a cardiologist as suffering AF and sent for an ablation. He has regular checks,takes no medication, has been told by specialists in the field that he is 'cured' and to carry on with his sporting activities (which he has done since the ablation 15 years ago). This worries me as I keep reading that there is no cure, but he is told that he is cured.
Just a final note - for yourself or anyone else considering an ablation. Google 'AcQMap afib'.
If I have an ablation it's the way I want to go. It's fairly new and you may even find out your cardio hasn't heard of it (or says he hasn't).
You'll need to push for it but it can be done. Find out what hospitals do it (not many) and ask to be referred there by your GP. I contacted the cardio directly when the trails had just ended - at the time they would only accept people who had had an ablation which hadn't worked (clinical trail involving 100 people). I asked him what I needed to do to have it - he said just get your doc to refer you and you are on board. Still got the email.
Worth some Google time and shooting off a few emails.
Go back to your GP Alan_G and ask to be referred to the Cardiologist or EP, stand your ground and you are right, most GPs do not have all the answers on AF, you probably know more by now. If your GP won't budge ask to see another GP. Good Luck
I totally understand where your coming from. GP’s today, not all of them though, but most of them, are not overly helpful or friendly whatsoever and even more so, if you the patient shows any sign of knowledge about ones health problems especially those of us with long term conditions. GPs prefer ignorance over knowledge. All the practices are under government and their local clinic’s’ budget controls and if they can avoid sending you to a specialists then they will and probably give you a stack if pills instead to shut you up.
But you have to fight their arrogance and demand, with respect of course, that you be given the opportunity to be referred to someone who is more qualified than your GP to give an assessment on your health. He/she cannot refuse your concerns or request.
Patients often feel intimidated by their GP and doctors know this, it’s basic psychology and they play on our vulnerability in very subtle ways. Don’t be fooled by it. Go there with renewed confidence, respect at all times though, as I’m sure you do and clearly tell him/her what you’d like done.
Have you asked your GP for a referral? Have you even seen a Cardiologist? You still need a referral from your GP to see an EP privately. Check at your local private hospitals and call to see how much they charge for a private appointment. Usually the charge is from £200 to £300. If they then require various scans and tests you would either have to pay or see if they can take you onto their NHS list. See if your nearest NHS EP does work at a private hospital and that might work just seeing him once there and paying for initial consultation and then going on his NHS list. This is what I had to do as in the first instance our local hospital didn't even have a cardiologist working there so paid to see a private cardiologist, then paid to see the EP privately and put on his NHS list where I am now waiting to have an ablation after 3 cardioversions.
The first thing an EP would look for is recent recorded evidence of PAF. If there is none, I doubt they would do much more than order tests. With your relatively low frequency and short event duration, it may be difficult to catch episodes on an ECG or 24/48Hr holter monitor, so your best move might be to invest in a Kardia device and record those PAF episodes yourself.
When my PAF frequency suddenly increased to 2/3 times a week, I went to the GP armed with Kardia printouts and he referred me to the EP. Long wait during which I became increasingly anxious and went private. I must have been lucky, but £200 plus Kardia printouts got me 40mins with EP and an Echocardiogram to confirm my suitability for a PVI cryoablation, which he performed on the NHS four months later. I’ve been free of PAF for16 months. If you are concerned about your PAF, sometimes the NHS needs some help along the way!
I must admit I’m less than confident about the process of seeing an EP privately and then accessing NHS services. I am aware that CCGs have policy in place to ensure this does not happen with certain NHS funding requests. As the usual route is GP to cardiologist then cardiologist to EP and people’s data is hosted on electronic NHS systems, usually particular to that NHS Trust, the processing of the referral and discharge pathways is usually managed by NHS Administrators to which the private provider has no access. I can see people reporting it happens, i just don’t see how it can happen that easily unless you have a particularly driven EP. Currently waiting for cardiology appointment as my local ET wanted me to be seen by them first before seeing him. As they had referred me straight to EP after monitoring and PAfib diagnosis, so I’m part of the NHS long wait. Also won’t the EP be wanting up to date bloods, echo, monitor, stress test etc before making any clinical decisions.
Change your GP! You are within your rights to do so. Just go to another surgery and ask to be taken on as a patient. I did this after having really difficult time with my GP and now have one that is really helpful and supportive.
I have an appointment to see an EP in June - I paid £240 to see him privately about a month ago - consultation was helpful but it doesn’t accelerate my cardioversion treatment on the NHS
This is one case where being in the US is a great benefit. Those of us on traditional Medicare just look online for an EP who accepts a Medicare assignment. Then we call and make an appointment. Those on Medicare Advantage plans may need a referral. When I was still working and had private insurance where I could see any doctor who accepted that insurance, I just went on the insurance company website, found an EP, and called for an appointment. I was seen a week later. They want us to have "socialized" medicine which I am totally opposed to. That would cause the rationing of care, which is what appears to be happening to you.
Thanks for all the replies. It would appear I have to go through my GP to see a cardiologist or EP, even for a private appointment. I'm okay with that because I find him easy enough to get on with, and if he can't prescribe the next round of medications himself, then he'll have to refer me if I go to see him to say I need more help with my AF.
At least I now know the route I must take if I want to progress things. At the moment though, there is no justification for me pushing along this route. My original questions were more out of curiosity than concern and so maybe a skype session or something similar with Dr Gupta would satisfy that side if things.
I'm in no hurry to be prescribed AF medications if it's not necessary yet, and neither am I in a hurry to have an invasive procedure like an ablation that appears to only have a moderate success rate.
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The longer you leave an ablation the less likely it is to be to be successful. Sooner is better than later in this case.
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