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Atrial Fibrillation Support

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TopBiscuit profile image
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Hello everyone

I'm a woman in my 60s and was first diagnosed with paroxysmal AFib about a year ago. I've been having an episode about every 4-5 months and was prescribed Flecainide to be taken at the onset of an episode and that seems to stop it within about half an hour, luckily.

Unfortunately, in the past month I've started having episodes much more frequently. My cardiologist is abysmal - I've already tried to be switched to another one at the same hospital but was just told I would be back on the waiting list, which was about a year!

Can anyone recommend a good Electrophysiologist in the Bath/Bristol area?

Thank you.

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15 Replies
CDreamer profile image
CDreamer

Dr Jonathon Pitts Crick is at the Spire and Nuffield. He is an occasional contributor on this forum. Only one I know of in the Bristol area.

It seems to be increasingly difficult to get onto any Cardiologist’s list be it NHS or Private these days, sad to say, as there just aren’t enough doctors for the number of patients it seems.

Otherwise you might look at AFA website or find a private provider website which gives a list of providers, unfortunately we were not able to find anyone to take both my husband and I on in the area we just moved to.

TopBiscuit profile image
TopBiscuit in reply to CDreamer

Thank you!

Morzine profile image
Morzine

hi I’m in France so can’t answer your question but wanted to say you’re in a great place on this forum with lots of helpful folk they certainly helped me when I was new to all this. Maybe u need to be on flecainade all the time, there’s diferent doses too…why not ask your doc if you could maybe try and bigger dose you may be on a lower dose, it comes in 50, 100, 150, 200

Chin up

Sue

Jetcat profile image
Jetcat

hi TopBiscuit, what’s been happening with your cardiologist.?

TopBiscuit profile image
TopBiscuit in reply to Jetcat

Hi Jetcat

I just find him extremely casual and he clearly has zero interest in giving me information or discussing anything. I've had one 'face to face' appointment with him and was in and out in less than 10 minutes. And several things that he put in his follow up letter to my GP were inaccurate. So, nothing major, I just don't have any confidence in him. I want and expect a Dr who is willing to discuss options with me and give their reasons so I can make up my own mind. Now that my condition is escalating this has become more pressing as I clearly need to re-evaluate and up the treatment.

Jetcat profile image
Jetcat in reply to TopBiscuit

yes I understand. Iv had a similar experience when I saw my first EP. He knew I was worrying and scared about my newly diagnosed AFIB and he sat back with his hands at back of his head and said don’t worry about it, it won’t kill you.!! I was more worried about trying to get through each day/week not knowing when the next episode was going to start.!! He said yes it’s sometimes a bit of pest isn’t it.!! I told him it’s not a pest and he should have more understanding on us who are seeking his help.!!

I refused a follow up meeting with him and was put under the care of another EP( I had to wait a few months though) but he was brilliant and eventually carried out three ablations on me. 👍

Karendeena profile image
Karendeena in reply to Jetcat

My original cardiologist said the condition was nothing more than a 'b***** nusience!" I paid to see an EP

Jetcat profile image
Jetcat in reply to Karendeena

you cannot believe someone would say such things would you.!!! These are people who I believe are probably on an intelligence level far far greater than myself and most of the general population.? Highly educated, intelligent, well studied individuals. So after all their knowledge of the heart and it’s complex workings etc can a minority sit there so care free about the symptoms we take very seriously and worry about so much.??

TopBiscuit profile image
TopBiscuit in reply to Jetcat

I think it's more about a lack of empathy than a surfeit of intelligence & education.

Karendeena profile image
Karendeena in reply to Jetcat

I agree 💯 they don't experience the dreadful symptoms and the frightening episodes, easy for them to make these remarks, which are so wrong

Jetcat profile image
Jetcat in reply to Karendeena

I wonder if any cardiologists or EPs have ever been diagnosed with AFIB.?

Elsie1955 profile image
Elsie1955

It could be how he's prescribing it. I've been on Flec for nearly 7 years now but only recently had an episode because they took me off it to try something else. I changed Cardiologists after that.

My new one put me back on it as prescribed years ago. By taking it at morning and night along with metoprolol (same, am and pm) and doing so at regular times, I've been back on my happy planet!

I would seek another opinion and while you're at it ask if maybe being on a steady course rather than intermittent would be better for you.

TopBiscuit profile image
TopBiscuit in reply to Elsie1955

My AFib has been extremely intermittent up 'til now - one episode every 4-5 months so the Pip approach has been appropriate, and in any case I'm deeply resistent to taking any medication on a daily basis in the long term. Unfortunately, given the sudden escalation over the past few weeks I'm probably going to have to revisit that.

doodle68 profile image
doodle68

Hi TopBiscuit, your experience seems standard for some of us .

I think some doctors underestimate how debilitating P-AF can be particularly for those of us who are highly symptomatic. When I was diagnosed with P-AF by letter (after an ECG ) having never heard of it I was advised to see my GP (who had also had a letter from a consultant) and discuss an anticoagulant and beta blocker. The GP I saw explained nothing about AF , asked if I had a PC , wrote CHADS and HASBLED on a piece of paper and told me to go home and look it up . I felt so ill during episodes and was so scared I could have done with some support. That was before I found this site and people who have AF, many know more about the condition than some doctors.

When I eventually got a diagnosis I saw an arrhythmia nurse once a year for the first couple of years and after that had to pay to see my own EP in person which really didn't do much anyway.

I started like you with occasional episode of P-AF, now I am in AF most of the time and am awaiting an ablation.

Treatment for AF follows a set protocol called the NICE pathway , are you aware of it. Here is a link...

nice.org.uk/guidance/ng196

Whichever consultant you see will follow the same guideline

TopBiscuit profile image
TopBiscuit in reply to doodle68

Hi doodle68 -

Thanks for your response, sorry to hear about your sadly lacking but - as you say - common experiences, and yes, I've read the NICE guidelines. What a joke that is. I would be very happy to have a consultant that follows the NICE guidelines.....which uses the word 'discuss' a number of times, along with 'A Personalised Package of Care and Information'.....including radical elements such as 'who to contact if advice is needed' and 'psychological support if needed' (as if!) and....this is a good one....'up-to-date and comprehensive education and information'.

Hence why I'm asking for recommendations We have to be very proactive, I've found. :-)

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