Lack of information: Hello, As a new... - Atrial Fibrillati...

Atrial Fibrillation Support

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Lack of information

manuerg profile image
4 Replies

Hello, As a new member, I am listening to other to learn a thing or two.

My wife had an ablation last May, but the scheduled follow-up was deferred twice and eventually took place last December when it was discovered that she was in AF again. She had a three day monitor fitted and then an echo at the end of January. So far no information from Bristol Heart Institute (in spite of phone calls), and both she and I are very worried about the future. She is 70. She has other conditions, so cannot take medication for the AF.

Has anyone else had problems with lack of information/progress?

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manuerg profile image
manuerg
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4 Replies
CDreamer profile image
CDreamer

I can't comment personally as I go to London but if you check a thread of a couple of days ago I think you will find someone saying that their appointments were being constantly changed and put back at the BHI so there could be a link. Have you tried ringing the AFA? They can often be very supportive over difficulties like this.

babbawabba profile image
babbawabba

That is a major concern. Wow, to have a follow deferred for something so serious and no phone calls I would definitely follow up with the AFA and the AMA as well and consider file a complaint. Paitients cannot be put on hold like this. I value your concern deeply. I have fired doctors in the past in relation to my care, as well as my daughters. I have to be in charge of my health. Sir, I wish you good luck in straightening this out for your wife. Keep me informed. Good luck. I have had three ablations and had to be cardioverted two weeks ago.I will have my fourth on March 11 at age 52.I would be highly upset if I was in your wife's position. Not good for our health etither to worry about these things.

weezergeezer profile image
weezergeezer

Manuerg,

From my experience in dealing with doctors consultants and the HNS in general I’d have to say that the response that your getting is just about the norm, there is a process in place and it works at its own pace, I’ve often been told that if it was life threatening or urgent they be in touch… pronto, I’d like to think that’s true, unfortunately it’s often the case that you have to endure the long wait.

You can go onto the NHS website and get info on waiting times….it’s not too easy to understand but it may help you understand where you are and how long youre expected to wait.

Good luck

manuerg profile image
manuerg

Thanks to all of you who have replied, and your comments have given me some food for thought and ideas. I am constantly trying to find out how to get the information I want (what is happening, etc.) and your ideas have helped me to investigate new sites and resources. It is comforting to know that my wife and I are not alone.

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