Is everyone with A/F supposed to have access to have a cardiologist or access to an A/F nurse?
I was diagnosed with A/F in 2011 and have not seen a cardiologist since.
I paid for a private consultation with an EP who was keen for an ablation - I was not at that time - and I haven’t seen one since.
No one reviews my care re A/F and I just carry on taking Bisoprolol and Warfarin. As I self test on Warfarin no - one reviews that either. I sometimes feel somewhat abandoned dealing with my A/F attacks by myself!
What is the norm? Do you all have cardiac consultants / nurses that keep an eye on you?.....
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123Elizabeth
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It can vary how often people see a cardiologist. Some Afibs are complicated by other heart issues. I see a cardiologist at least once a year on the nhs. I have access to one of her specialist nurses by telephone. She also arranges an echocardiogram and reviews it and then sends me and my GP the findings with her comments.Ten years is far to long to go without a checkup.
I see a cardiologist annually (private medical care here in South Africa), He does a a scan of my heart to see if it is structurally sound, talks me through the findings and tells me to return in a year unless I have any problems or worries. I'm due to see him on Friday. We only have one EP in this Province, but sufficient cardiologists - people usually travel to Cape Town for an ablation, but their cardiologist here in KZN takes care of them after the procedure. My GP prescribes any drugs I need and phones the Cardio if I have any concerns when I see her for a new chronic medicine prescription which is every six months.
Hi Elizabeth, When I was diagnosed with AF I was given an appointment at the local hospital to speak with a cardiac nurse for a general chat about my condition. At the end of our chat he gave me his card with an email on it and to contact him on any issues I may have, this was around 3 years ago. Since then I have been put on various meds and have had two ablations, I have been able to contact him by email during this three year journey. I suggest you contact your GP and ask them for a referral to your local hospital to speak with a Cardiac nurse about your particular situation regarding AF. Then hopefully you can have regular contact such as when needed. Good luck
I have nobody looking after me either. My AF isn’t too bad thankfully but I’m aware it can change. I have no EP or Arrhythmia nurse and just get by with double BP tablets plus Rivaroxaban 20mg each day. I also have a one lead Kardia that I’ve used once.
I too feel somewhat left to it all. Diagnosed around a year ago.
I was diagnosed last September at A&E and then this led me to have a weekly monitor, then an appointment where I had another ecg and echocardiogram, then a discussion with a cardiologist over the results and future medication etc. Since then, I’ve had a follow up after 6 months and I’ve got telephone access to Arythmia nurses if I have problems. I’m waiting for a further cardiologist appointment later this year, for another check up. I’m afraid with the way things are, nowadays it seems to be on the patient to chase up and make things happen, otherwise unfortunately, you do just get left 😳
I’m not on anti coagulation yet, but I thought your GP at least should be getting yearly full blood tests to check all is well?
Definitely ask your GP for a referral to a cardiologist for a review as 11 years is far too long not to be seen. Also don’t let your GP do a review instead either….argue it if they try. I expect things have changed in 11 years with your afib since you were diagnosed and you can say you need to discuss those changes.
If I have problems - worsening symptoms - I contact my GP and she contacts a cardiologist and either they make a suggestion or I get a phone call. I had some consultations with a cardiologist and an EP in the past but that was because things went pear shaped, I certainly don’t have regular reviews and haven’t been referred to the local arrhythmia nurse clinic either. I refused a second ablation so am left to tick along on my meds.
If you feel you need a review you should ask as you are certainly entitled to one ❤️🩹
I think I’m more concerned about having long term paxoxymsalA/ F with no one checking whether it is causing any long term damage. When I get it I am generally incapacitated for at least a couple of days after it has reverted to normal sinus rhythm- and I am permanently tired!
That is the problem, usually nobody worries if your HR is in normal range with meds (60 to 100) and you are on medication prevent stroke. With your symptoms it sounds as though your AF isn’t controlled. It would be a good idea to get a Kardia so you can show what rate your heart is running at both in AF and sinus.
I should just say that there is no point in seeing an EP unless you want an ablation now. Ablations are what EPs do so it’s best to see a cardiologist with an interest in arrhythmia first to get necessary tests done and a referral if you are suitable.
Under NICE guidelines if your GP can't satisfactoily deal wioth your AF then he must arrange for a consultation with a specialist who may be a cardiologist or even an arrhythmia nurse.
At the very least your INR readings, from presumably a Coaguchek device ,should be checked with a venous draw every 6 months. You must have slipped through the net if this has never been done. I would suggest you contact your anticoagulant clinic to arrange this.
In NZ you need to have your Dr to refer you to a specialist.
I didnt know either. The Dr locums wouldn't change me off Metoprolol. I didnt want it in the first place, After stroke. To do a review I asked Dr to refer me.
Then things moved.
I guess if your AF is controlled with H/R under 100 and the pills dont give you worrying side effects you get left alone.
Ask Dr about the many Ablasions if you now wish to persue them.
You need the specialist public or private.
Perhaps you are curious or you have new development on AF or rapid H/R frony.
My elderly friend is now 89 and has had no specialist care since his diagnosis. He uses only warfarin. I think once the mechanics of your heart are deemed okay, then the AF aspect, all else being equal, is treated by a GP unless you are especially symptomatic or have other conditions.
If you went private and didn’t proceed with their treatment then it’s been left with you to get your own follow upsI go private and consultant gives options then I let the Secretary know my decision then she arranges the follow up
If it’s been a long time you’ll probably have to be referred back again but have you decided on how you’re currently feeling and is it affecting you in that you want treatment now?
Gosh I’d say go see doc as ten years is a long time. Get a review. I see a cardio once a year for all the gubbings they do on machines, then see my doc every two months for my prescription. I’m in France so maybe diferent in uk.Perhaps if you get an afib that’s the best time to see doc too.
Technically I was told by my EP Id be reviewed annually. (A review has just meant a phonecall from him. )Its long past that date now. I think the NHS is overwhelmed and as Ive felt ok I dont like to bother him. Ive never had access to a nurse. My GP wouldnt have clue at how to manage my meds so definately wouldn't trust them......they dont know the difference betwen the three types I take: blood pressure, anti coag, heart rate so goodness help me if I had to rely on them!! I would definately ask for a review especially as the Afib lays you up for two days and you feel tired all the time. P-Afib I was told is progressive, some people it progresses slowly (I think Im on one of those lucky ones) this is no excuse to not see you for years. I suspect youve dropped off their list and it needs flagging. Id first contact cardilogy department to see if you are still on their books. If not get GP to refer you explaining you feel things have change,
Id also raise the fact that your warfarin levels have never been reviewed and they should be done 6 monthly. You are concerned.
You need to get referral through your doctor - if you can get to speak to one! They are keen to get people off warfarin and on to anticoagulants at the moment so that would be worth discussing too. 3 years I've never seen a cardiologist just the AFib nurses. I can contact them thro phone and email. However, after having a year off from seeing them I had to go via my GP to get back to them. GP definitely your first point of call - good luck!
I have not seen a cardiologist or my GP for over 3 years about my heart. No-one monitors my medicine either so I just continue taking bisoprolol and Apixaban for my AF. Luckily I have not had too many problems. If I ring my GP surgery about any heart problems they tell me I have to go to A& E.
Same for me in Aussie land. Had an ablation just before covid, all quite suddenly, the cardiologist was to be seeing me often , then tapering me off if all was going OK. Had one phone consult , took myself off all bit anticoagulants and haven't heard a word since. I'm doing OK.
In fact, I recently asked my newish GP to set up an echocardiogram — something my last GP surgery did for me every couple of years without going via cardiology, just to check the afib hadn't triggered any physical changes.
This time I was informed that I would need a cardiology referral first. OK, I say, refer me. GP then tried to do that and was told by the cardiologist that I wasn't eligible for either a referral or an echocardiogram unless I was showing clear symptoms of heart failure!
I wrote to my MSP (I'm in Scotland) questioning the rationale for this but, after eight weeks of waiting, received a nonsense response from the NHS CCG saying they couldn't help because I hadn't been referred by my GP and wasn't on the waiting list.
So entirely on my own — GP's only solution is an annual ECG at the surgery, which I can pretty much cover off with my Kardia, TBH...
Further evidence, alas, that the NHS is now completely broken, and actually caring for patients — especially those taking responsibility for their own health — is not a priority.
That's unacceptable. I don't understand what's going on with medicine today. I'm in the USA and it's bad but at least you can see a Dr. Not that they always are of help. 🙄 Take the advice of others here and contact your GP and demand answer. Take care.
i have been discharged from 3 hospitals since 2017 by cardiologists but i have a mecanical mitra valve AF and heart failure now under another cardiologist and up to now is treating me ok i am due to see him again by the end of the year . i will let you know
I am fortunate to have access to both a cardiologist, a cardiologist NP and a wonderful EP. I see all of them within the year. I have aFib and a pacemaker.
I think we need to be pro -active when it comes to our health these days, i can barely get through to receptionist never mind a gp in my neck of the woods, 10 years is a long time not seeing anyone.
I think if you've every had afib, you should have a cardiologist. It's not that the doctor keeps an eye on me, but a cardiologist should be involved. I see the doctor about every 6-8 weeks, depending on what is going on, and I have had an internal loop monitor placed to monitor heart.
Not sure why you declined the ablation. I had one as when the doctor told me about it, I thought it would be a good ideal. I've still had some episodes of afib (about 16 in the past 2 years), so the ablation is no guaranty of further episodes, though I can't help but wonder if I might have had more had I not had the ablation.
I live in the US so maybe things are a bit different here. Every episode of afib that I've had, got me taken to the ER and admitted to the hospital.
I've always been aware of when I'm in afib, though some people are not, which I would think would be another reason to see a cardiologist regularly.
Hello Elizabeth, I have a telephone conversation with a cardiologist about every nine months or so, when he decides to talk to me. I have no way of contacting him and, if I leave a message with his secretary, it's ignored. He did arrange for a telephone consult with an EP but that was about 3 years ago. I do not have access to a specialist nurse. Although I can, sometimes, talk to one of the GP's in the practice I'm listed at, it's been apparent for some time now that they won't get involved with my AFib having referred me to a cardiologist.
I live in Ireland, I have no access to a cardiologist or EP.
My Afib is getting more regular, sometimes racing heart with extra beats pushing in, sometimes a run if ectopics, - beat, beat, stop , beat, beat stop etc. Both are really frightening
After a stay in Resus due to fast Afib, which resolved with flecanaide after 12 hours, I was given a 3 month follow up appointment.
This consisted of weighing, measuring, an ECG. I had an echo done a month before.
A doctor took me into an exam room, went over the results ofthe echo, which were ok, except for moderate mitral valve regurgitation.
He gave me an appointment for 12 months, and said I may need surgery in 5 years time.
Afib was not discussed, mefs were not discussed, any treatment was not discussed.
Since then, I've had to phone the Edoc in the early hours for afib. They sent an ambulance, and I was taken to A & E.
I called 999 after that as again I had fast Afib for 4 hours.
No follow up, and discharged as soon as I reverted to nsr.
Its 2.40 am and Ive been in afib for 3 hours, Im so tired, do not want to go to A & E again, but frightening.
Ive taken Metoprolol and Flecanaide, but no success.
I wish there was someone to contact in these really scary early hours. Meds aren't working, so what to do,???
it’s scary isn’t it feeling that there is no one you can call on. I hope yours settles soon. Perhaps it would be worth a call to the gp if you are still feeling unwell today - and definitely 111 or your equivalent if you feel any worse.
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