AF nurse

[tillyrose]

Hi guys, just wondered if most people with A F go regularly to a clinic or hospital as i often see on here about speaking to the A F nurse . I have never been told to attend any hospital clinics apart from when i was diagnosed and put on flecanide and bisoprolol and then once more later on when i was asked to consider an ablation , that has been my only contacts, so when i have bad attacks which wipe me out for days i have no nurse or anyone to speak to if i have any questions, is this normal ? thanks in advance.

[BobD Volunteer]

You have obviously never been to see an Electrophysilogist I presume .

These specialist cardiologists deal with arrhythmias and it is their clinics who generally have dedicated arrhythmia nurse specialists (ANS) to give them the correct title. I was patient representative on the BHF committee who introduced this role around 2007.

If you have only been in the care of your GP then you need to ask for a referral to a specialist team in order to have this access. Many people short circuit things by paying for a private EP visit to kick things off.

[tillyrose in reply to BobD]

thanks bob for your responce, much appreciated.

[jeanjeannie50]

My EP has AF nurses and while I was under his care for three ablations I could call them anytime. Once he had discharged me, saying I was one of the people that ablations didn't help, that was the end of their care. Fortunately the cardiologist at my local hospital has 3 AF nurses. If I have a cardioversion or need their help I just call them and I'll go in to see them for an ECG and chat about it, but once I have been a year not needing their care I have to get a referral from my GP to see them again.

Jean

[tillyrose in reply to jeanjeannie50]

thanks very much jean , much appreciated.

[Physalis]

I've never seen an AF nurse. After my ablation nothing. Come to think of it I only had one appointment before it. Maybe seasider18 has caught sight of one.

[tillyrose in reply to Physalis]

thanks physalis.

[Ppiman]

After my ablation for atrial flutter in June 2019, I had an episode of severely symptomatic afib and tried to phone the nurse unit at the hospital but the line was forever busy. Eventually, I felt so poorly that I phoned the consultant (an EP cardiologist) directly via his secretary and he phoned me back and told me to come straight in, which I did, thanks to my wife's sister. Since then, nothing until this January when afib and tachycardia began again, but then I just phoned my GP who is always helpful. Eventually I saw the cardiologist again and after an echo cardiogram, he signed me off as fit but suffering occasional brief afib episodes with tachycardia and bradycardia. Last week the "brief" episode decided to turn into a prolonged one but all was well. I think a GP is a better port of call than an arrythmia nurse, myself.

Steve

[bassets]

I'm three weeks post ablation and have rung up the cardio nurses twice for advice in that time, and they were very good. Before we moved (two weeks pre-ablation), I couldn't find anyone to talk to as my GPs were not that interested or knowledgeable. When I wanted help I had to ring the local cardiologist's secretary to ask for help. I wasn't able to contact a cardio nurse before the ablation, and wasn't offered any other contacts. ( My ablation was done at a second hospital) It remains to be seen what my new local cardio department can offer now.

[Byke]

Hi, I was diagnosed PAF in June 2020, when taken into hospital when my heart had been racing for several hours and put on medication, this happened again in July when medication was changed. I have not seen a doctor or nurse since then. I have had letters to say cardiologists are going to phone me, but on all three occasions this has been followed by them being cancelled. I presume if I have another episode of AF I would attend hospital again.

[Karendeena in reply to Byke]

Hi Byke if I was you I would do what BobC suggests and go see an EP, I did and it was the best move I ever made I now feel well supported and I can ring his secretary anytime. Worth every penny of the £170 I pay every 6 months. I also know I am being monitored properly and if I need an ablation at any point I can go on his NHS list

[Byke in reply to Karendeena]

Thanks for this, will look into it. I am not having any problems at the moment, it’s just that it would be good to feel supported and able to ask questions. When I went into hospital last July , I was told by a doctor in A&E that I had had a heart attack. Prior to discharge the next day I saw a cardiologist who told me I had not had a heart attack, but A&E had sent a report to my GP stating I had heart attack, but then cardiologist sent GP letter to say I had not. This doesn’t give you confidence. But I will try what you suggested, thanks

[Karendeena in reply to Byke]

Hi Byke, frightening when the experts can't agree. All the best keep us posted 😊

[Byke in reply to Karendeena]

Thanks, will do

[wilsond in reply to Byke]

With all respect to A and E medics,they are not the experts ! I'd trust a consultant any day over a general .

[sphilcule]

Hi tillyrose, I have had AF for 3 years and first saw a Cardiologist for diagnosis and since then see the AF nurse every 6 months to have ECG, blood py etc and discuss medication

[ETHEL103]

I would be interested in the answers too as I have only managed to see private ep so no cardio nurse

[bantam12]

My Cardiology clinic ( small district hospital and no EP's there) have several specialist arrhythmia nurses, I was given a card with contact numbers so I can call them anytime with questions or to get help with meds and so on.

[stoneyrosed]

I had an ablation in March , no one has been in touch with me since, I feel completely out on a limb. Didn’t know what to do regarding meds couldn’t get hold of the cardiac nurse, was very difficult getting an app with the GP. Just recently (last week) cardio nurse finally emailed and said wean off all meds one at a time. They cannot make me a follow up appointment as they are so far behind. I was supposed to have one 3 mth after ablation.

[Staffsgirl]

Was diagnosed early 2018. Only saw Cardiologist at diagnosis (was in hospital when it was diagnosed). Have seen no one other than GP since.

[6TIMES]

Since been diagnosed with the dreaded AF seen the cardiologist had the usual tests and the usual difficulties getting the results, got discharged, given medication from gp, never had any contact since, anyway gps are in hibernation, more chance of winning the lottery than getting a gp appointment

[Karendeena]

Hi tillyrose I go to an EP privately every 6 months and find this a real benefit as you csn discuss anything that concerns you and also talk about ablation and meds. If I get a bad episode I can just ring his secretary with my concerns/questions and she contacts him and comes straight back to me. Costs me £170 every 6 months but worth every penny if you are prepared to pay

[wilsond]

Yes I do,I referred myself to an EP privately after I was diagnosed in A and E by consultant cardiologist and came onto this forum trying to find out what it all meant.I can ring three of them for advice or to let EP know about an event etc.

I can also email directly.

EPs seem to have arrthymia nurses on their teams.

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