My six week follow up for a Cardioversion last October was originally scheduled for 5th March which by any stretch is well over six weeks. Had a letter this morning saying this has been cancelled and a new appointment made for 16th July, a full nine months from the original procedure.
I wouldn’t mind so much if the Cardioversion had been a success but I was only in sinus rhythm for four weeks. Back in atrial flutter with a heart rate held at around 105 with the help of a hefty dose of Bisoprolol.
I will phone the hospital first thing Monday but am not anticipating much luck.
I could scream but the beta blockers make me too tired to make the effort.
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spinningjenny
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Some thoughts to share.... Try to stay calm, it won't help you to become upset. Are you in Britain ? If so then your options are limited unless you go private. If you are in the US then you might check other doctors out. In either system you have to learn to operate within the parameters of that system. I don't think one is better than the other, just different. I am in the Us so I have never waited for a Cardioversion, Ablations are a different matter. Do you think having your med. adjusted would be a stopgap solution.? I would start there. I understand your frustration but if you want to change your situation you have to find out what's available to you.
There will be some more replies soon which may offer you different information. I hope you find an answer. Pam
This may sound like a silly question but has it been explained to you why your appoint. has been cancelled? Are you on a cancellation list whereby someone drops out and they need to fill a gap?This does not change the actual situation much but may quell your anger and subdue your anger and anxiety.
Ask to go on the reserve last minute drop of a hat list. If you are able to respond to a last minute call that is - I did and they gave me 2 days notice! Good luck!
I was always told to liaise with GP regarding meds in between appts. If need be they’d contact the cardio team or EP. I was also given the contact info of a specialist arrhythmia nurse at Frimley Park hospital, for any concerns.. You can try finding out who that is at your hospital.
Not sure if this will help, but if it’s possible, you might get a better response if you have a face to face conversation with the cardiology department rather than doing it on the phone. Obviously you must remain call, calm and collected, but if you can, try to get over just how bad you feel compared with the period just after the CV and the concerns you have for the continued deterioration of your heart if you have to wait til July before you see anyone. Ask about being the possibility of being put on a maintenance dose of a rhythm drug such as Flecainide to help prevent enlargement and seek a review of your drugs to take account of your current situation.....good luck.
Quite a trek to get to the hospital but I will try to remain polite when I ring. I can’t take Flecanide, it gives me pretty much every side effect on the list apart from death!
That sounds crazy and I think you have every right to be upset. I've had lots of cardioversions and have always been seen for a check up about 4 weeks later. Decide what you want now, is it to try another cardioversion or have an ablation?
You have to be a little cunning here to get what you want. When you ring the hospital on Monday ask if you can speak to one of the AF nurses, be charming and polite. Add a bit of flattery if you can, saying how wonderful they were when you had your cardioversion. Tell them how distressed you've been over this weekend with the appointment date changing, be firm in a nice way. Tell them straight what you would like now and see what they come back with. Tell them you feel you've been abandoned. Perhaps you could go on the waiting list for a cancellation appointment.
Or you could just talk to the appointments person first, to see what they can offer. Then call the AF nurse later if needed.
Wishing you well, let us know how you get on please.
At Staffs they do the CV's once a month on a Saturday. I think it's13 slots they allow for. However you can ask to be on the standby list - ie if someone doesn't show they'll fit you in.
It's certainly worth asking about. It's almost like being on standby at the airport with Ryanair or Easyjet - if someone doesn't show last minute you can jump on board ! I think most people do turn up for their CV's but you never know if someone might be ill on the day and not able to have it done.
It's very important to not forget a single dose of anticoagulants if you are lucky and get on the 'last minute' list.
Have you discussed taking something to help you stay in sinus (after the CV) with your cardio ? We are all different but for me flecainide has worked wonders. It's worth a mention to see what they say.
Ask GP to change Bisoprolol, he/she will probably have to contact Cardiologist or EP as I believe GP cannot prescribe certain beta blocker drugs. There are other betablockers which don't have the awful side effects that Bisoprolol can have and may give you some quality of life back while you wait. In my own experience, I visited the hospital only to find out they couldn't do my cardioversion because nobody was there with the experience to carry out the procedure and all appointments were full. Call the Cardiologist department and hopefully speak to the nurse who will pass on your concerns and usually they get back to you quickly with some sort of way forward. I was put on Flecainide and Atenolol for my AF and it really changed the way I felt. Good luck
Great advice above but if you feel as you are not getting the result you really want tomorrow I would go to or ring the PALS ( Patience Liaison Advice Service )all hospitals have one , it was the only way I could get my wife to see her Stroke Consultant after two cancelled appointments. The consultant apologised that we had to go down that route. None of us enjoy having to be over zealous with our pushing for what we want, but it is wrong that extra stress should be put upon you. Good luck
Is there another Cardiology department with a good reputation within easy reach for you? You do have the right to discuss a new referral with your GP as your current care is so unsatisfactory.
If travel elsewhere is not possible, it is important that you keep trying on the phone to Cardiology and via your GP. As others have suggested, try cancellation lists, ask your GP to mediate etc.
The ‘problem ‘ with AF is that we can be put at the bottom of a list as the condition is not immediately life threatening. I was told I would have a follow up appointment 6 months after my initial tests, diagnosis & treatment. 18 months on - I’m still waiting, but content as my meds keep me asymptomatic.
In your situation I would be contacting everyone possible. With a HR consistently above 100 a trip to A&E might produce some action.
Failing everything else, a one-off private appointment, where you make it clear that you are looking for a treatment plan, but would need to transfer back into the NHS for any tests or treatment, should cost around £180 and you can usually be seen in about a week. This is what I did & was prescribed Flecainide & Apixaban on which I’ve been fine. I decided to go back for one follow up at &120 & then transfer into NHS.
I second going the PALS route. I had ablation in 2013 an 2014, and no problem until last year. GP was brilliant, 48hr monitor and echo done following week. That was last April and I'm still waiting for 3 month follow up! A tweak of meds has it well under control, but it means that I can't get it covered on travel insurance. An email to PALS resulted in a very apologetic letter from the Cardiologist with the results which the Insurance company happily accepted and I am now able to travel without worry. PALS are brilliant!
I wonder if you are at the same hospital as I am? This happens so often I have lost count. The good news is that I have tried all the tricks above - a one-off private consultant appt, calling the AF nurses, calling the consultant's secretary, phoning for a cancellation, a trip to A&E etc - and they have all worked with the exception of PALS. If all else fails you can usually get a slot on Xmas Eve or New Year's Eve or dates before bank holidays 🥴😉.
I go to Wythenshawe. I have had numerous appointments changed including one for OH surgery when the surgeon took a month off on personal leave. He eventually referred me back for an urgent appointment with my EP, that took five months! The NHS grinds exceeding slow in the north.
I think cardiology is under strain everywhere. I am at St George's in London. They have got a lot of work on now they are finally taking AF seriously. So many people suffer with it. For 10 years till 2015 I had a pat on the head and a daily aspirin and was told not to worry!
Like you I have found that the consultant's leave dates play a part in all this delay. If I am given an appt in August (his annual holiday) I always reschedule immediately to September, otherwise I know as the date approaches it will be postponed and probably be rescheduled to December.
That's nuts... 12 years ago the NHS was great but that sounds awful.. My son lives in Bradford and has Afib courtesy of his alcoholism. He was given a cardio-version appointment months ahead too... Here in Wisconsin, I can get one on demand. A bit longer than it takes to get a burger... ok it would be $395 or 275 quid after insurance, but I would happily pay that... I have just bought a finger pulse monitor from amazon ($10), and so in seconds I can tell if I have a racing pulse and can whack it with "lol" betas... Earlier whacked, the sooner it goes.. Typically 3 hours.. Another benefit is that less than a 5 hours event, I don't have to take expensive Eliquis slippery blood pills .. ($640 a month or $300 after insurance but $80 from my source "somewhere north of here"
I've been through this many times and I know you have every right to be angry. My only bit of advice is have a think about who you should be angry with. Sometimes it is the consultant but that is very rare. It is also very unlikely to be the staff on the desk. It is usually the system that denies adequate resources for cardiology. Unless you are going to start a campaign you probably won't win. Perhaps you can tactfully let the consultant know that you are unhappy with the process. Try to embarrass him or her in to intervening. Could you find out the email address of the consultants secretary. A bit of badgering might be in order.
I pretty sure it’s nothing to do with the consultant but I will probably contact his secretary and see if she can help. I suspect it’s all down to the booking system which appears totally unfit for purpose.
Is there a manager of the cardiology department (probably not a doctor)? Get to him/her that a nine month wait period is unacceptable because your heart condition is getting worse due to all this wait time. Even ask for an explanation as to why you were bumped.
I’ve been in touch with the hospital today. The arrhythmia nurse agreed that nine months was not acceptable. She’s spoken to the consultant and I am going to be added to one of his clinics, just haven’t got a date yet. Hope it won’t be too long.
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Successful Cardioversion yesterday :)
Permanent AF, decision to do nothing 
ablation and enlarged left atria
Back in AF after two days
