Hope you dont mind me having a rant - I need support from people who understand what Im going through. I had successful ablation 8 years ago for AF and Flutter. Last August suddenly started getting long runs of AF and Ectopics almost 24/7 felt lightheaded shortness of breath, tired and intermittent chest pain so went into A&E. to long a long story short ended up going to A&E twice in a week and then again to out of hours hospital following 111 call due to worsening symptoms. The A&E doctor did report to GP and 2 referrals were done for Cardiology. The first one was changed by Cardiology from urgent to non urgent, so my GP did a second referral as urgent.
So I have been waiting patiently and checking with appts dept every so often being told Im moving up the list. Early February I suddenly had episode of Atrial Flutter Tachycadia, last 8 hours. Went into A&E again, they monitored me until it stopped and sent me home after 14 hours. A&E doctor said I had waited long enough had been 8 months, I needed to have Echo and Holter Monitor before I see Cardiologist so she would do a direct referral for these 2 tests.
3 weeks later I got Echo appt and attended last week. Hopeful that the Holter Monitor test appt would be soon yesterday I phoned them to be told that my original referral from August had been cancelled, has been superceeded by latest referral in February. And its now a non urgent referral for a 24 hour Holter Monitor (the original referral was for a 7 day monitor) She then told me that the waiting list for non urgent is 8 months and that I will now have to wait a further 8 months!!!! I was speechless! I challenged why, this cant be right and asked her to look at my original August referral could she speak to someone, she checked with her superior but came back and said only way to get it changed is to have my GP do another urgent referral with more detailed information, however they could still triage it and make it non-urgent.
I am so upset. My heart has been in AF on and off with lots of SVTs and Ectopics all night feel terrible. Surely this cant be right, its not fair.
Written by
wendy6
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Hi Wendy, what you are describing are the typical symptoms we all get, but some people stay in uncomfortable AF for many days. I was once in it for two months while I awaited a cardioversion - couldn't walk anywhere as it made me feel ill. I was often admitted to a ward for quite long periods.
Most of us old hands with AF now sit out attacks at home, but anyone feeling they are on the verge of passing out or having chest pain - well they must go to A&E. In fact under those circumstances I would dial 999. Do your episodes always self revert?
The wait is frustrating I know, my AF nurse told me that lots more and also young people are now presenting with AF, so that department is so much more busy. I last saw my cardiologist August 2022 and am awaiting another appointment. I've had AF for 18 years now, 3 ablations and numerous cardioversions. For the last 3 years I've been in constant AF. How I wish I could have had 8 years free of AF like you - I'm full of envy. Your cardiologist will have looked at your latest ECG to determine whether your situation is urgent or not.
Since Covid struck, so many departments are way behind with their appointments. It's a crazy situation for everyone. Some people pay to see a cardiologist or EP privately and I believe it costs about £300. You may want to consider that.
I'm in the US. If needed, I could call cardiologist's office in the morning and be seen the same day. Perhaps you could call doctor's office and ask to be seen sooner.
It seems simply bizarre how these changes can be made by people other than the consulting doctors you have seen and who decided on the origional referral. Imagine the form filling and such like that goes on behind the scenes of even the most straightforward seeming case.
This is perhaps why for every pound put into the NHS so much drains away down administrative plugholes.
If you can afford it, I would pay for a 7 or 14 day Zio monitor. Alternatively, the Wellue AI home ECG device is available for under £200 and gives a 24-hour print out that seems to me to work very well. If you go for this, search first for a discount as I received 20% off, then a further 15% off. Feel free to message me using the "Chat" button / link above, if you want any help or advice.
So did I but the interpretation was a bit vague, (resulted in no change in treatment necessary) and when I uploaded it for my NHS cardiologist to see, he said the baseline was very variable so difficult to interpret but short episodes "probably AF" so increased flecainide which has helped. felt like "suck it and see".
Wendy, I really sympathise with your situation - the delays and changes to appointments will be making you feel worse than you need to.
My experience is that people like us can't be prioritised because the NHS is overwhelmed, and it looks to me like cardiology has been very badly affected by the current crisis.
So I paid around £250 and saw a cardiologist privately. I took my kardia history with me which was very important.
It was the best thing I have ever done. I think that the cardiologist will send a report to your GP and this would really strengthen your case.
So, if you have £250 or can put it on a credit card I suggest that you go for it. Your health matters more than anything.
Sorry, Wendy. The NHS is falling apart. It seems COVID has also upped cardiology issues too, and there is also backlog.
I agree to see a private cardiologist if you are at all able. A good plan is to see if your NHS cardiologist does private work and see them. If you don't usually have persistent AF it's important to stay on top of Af early to prevent it becoming persistent. Good luck.
Do advocate for yourself. I would likely not be here now if I hasn't done so.
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Vepapamil for ectopics
Atrial Flutter, PAF and another visit to A and E.
Update to ‘Waiting List’ post - cardiology appointment 
My AF journey takes a turn for the worse!
24 hour monitor 
