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Atrial Fibrillation Support

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seabird38 profile image
14 Replies

Hi everyone, I would like to ask about peoples experience's when first listed for ablation.

After 3 ½ yaers of PAF, I was informed at my last EP appointement on 2nd December that I would be listed for ablation and my care would be transferred from outpatients to the heart unit, hence no forward o/p appointment was reqired.

To date, my GP and I have not received any confirmation or corrrespondence about this. I phoned my EP's sec/pa every day last week but only getting through to her answer phone. I left messages but as yet, not received a return call. I am left wondering if the verbal listing has been been actioned, and what other tests/procedures may be required prior to my abalation.

Can anyone please advise me, am I being impetuous or should I have received some info after 8 weeks?

Many thanks.

Ray

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seabird38 profile image
seabird38
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14 Replies
dedeottie profile image
dedeottie

I would ring and ask. Many times i have phoned only to find i have been lost in the system. It cant do any harm and may do lots of good. X

Ray , Unless you have it in written form , it probably will not happen. I ensure I have every document, letter ,patient Discharge Summery, ECG copy as a record of events... and I keep a daily diary.

When I go to clinic .. I have a record to hand over to the Medic. My Hospital records have a habit of being misplaced , late or lost?

My Hospital 2014 notes and caused many problems.... they finally appeared very recently. According to the Doctor, I had not been to the Hospital for 1 year?

Actually, been to Hospital about 20 times?

Also ,when I do have an outpatients appointment... it is duplicated (Clinic 09.00 and Clinic 10.30... same day)....?

You lose a day having to travel to clinic...queue up and run up a major car park bill.. only to be told they have no notes... and cannot access the other clinic's website?

I have had a Hospital cancel my fixed appointment ... Due to unforeseen circumstances

three times , then refer me back to my GP ... to rebook?

Suspect it is chronic Left Hand, Right Hand Syndrome?

You are absolutely right.. you need confirmation and a set date.

You do not want to go back on the waiting list again?

The NHS treatment is excellent.... the paperwork lets it down, especially when, multiple clinics are accessed?

BobD profile image
BobDVolunteer

Whilst I agree that you need to get something on paper it could well be up to six months waiting list of ablation so don't panic too much.

howesgilly profile image
howesgilly

I didn't hear anything afteryou cardiology appointment until I was called by the ablation department 5 months later. However I know a clinic letter went to my gp. If no joy from the doctors secretary, phone the cardiology dept you know you were referred to and they may be able to help .

Also I didn't have any pre op assessment or tests before ablation. Just to come in early morning have ecg and then down to cath lab

checkmypulse profile image
checkmypulse

Twice when referred on by GP to specialists at another hospital trust, not ones local trust, I have waited and waited. Finally on ringing the secretaries of these specialists to ask if they have 'sight' of me I have been told, after they have checked their i/c mail and looked on various databases, that there is no trace of letters of referral. On both occasions I have gone back to GP's secretary and asked for her to fax the hospital secretaries a copy of the letters and finally I am 'in the system.' So you are not being impetuous by just checking they have record of you. The wait time for appointment may be a different issue.

PeterWh profile image
PeterWh

Try again and if no joy then email or if not writ in and send signed for.

Some very good tips above

jeanjeannie50 profile image
jeanjeannie50

Hi Ray - Its sounds like your EP's secretary may be on holiday. I would keep calling until you get hold of her. Your experience of not getting your ablation appointment is the same as I had and it was only realised that I'd been forgotten somehow when I rang and chased it.

Jean

Mike11 profile image
Mike11

Ask your GP to follow it up. He'll get a better response than you will I'm afraid

wendy6 profile image
wendy6

Unfortunately same happened to me. I saw consultant First time was told on waiting list but nothing happened, I contacted them and they sent me pre assessment forms to complete, I sent back. Waited, went on holiday chased up but the had lost paperwork. Had to do it all again. Resulted in delay to by ablation 2 months. So motto is to ensure you keep on top of it , keep notes tel calls, and dont worry about chasing them. Good luck. My time from referral by local cardiologist was April 2015- EP consultant end May, Ablation January 2016. But I also got delayed by strike action November 15😒. Good luck

wallacekaz profile image
wallacekaz

Hi Ray have you tried calling the Arrythmia nurse at the hospital if shes like mine she will look into it & sort it for you...If you ever feel unwell with it she will also do ecg same day for you & speak to your doctor.I only ever contact them now & dont go through gp to save time.I have now had to have av node ablation & pacemaker as I eneded up very unwell & had 6 weeks in hospital good luck

seabird38 profile image
seabird38

Thank you for sharing your many experiences and all the kind help and advice you have given me, between you I now have a few options to pursue.

The AF story has many hurdles to cross and with your help I hope to make this next one.

Thanking you once again.

Ray

Jason1971 profile image
Jason1971

Hi Ray,

I had an appointment with my EP on Christmas Eve and received a copy of a letter (My GP was also copied) stating I was to go on the waiting list and I was to start Warfarin again. Are you on Anti Coagulation meds at the moment? If not I would chase this up, so if a letter is to drop through the letter box with an Ablation date you face no delays. If you are on ACs, then I would keep trying. There have been quite a few people on this forum who have been lost in the system. This is to be my second procedure things are running pretty much like they did with the first one. As for my appointment for the procedure I got a letter about 4 weeks prior to my admission.

Good luck,

Jason

PeterWh profile image
PeterWh

Ray. Warfarin is important to start earlier rather than later. Most are ok and settled in 6 weeks. However there are the odd bods like me who don't settle. Even after 12 weeks and cutting out all green veg and salad my INR was yo yoing all over the place. Fortunately both hospital and EP were happy to proceed with my ablation. Even on the day INR was out of range on low side even though I had taken it as normal the night before. They topped it up on the day!!!

seabird38 profile image
seabird38

Thanks Jason & Peter for your concern/advice.Yes i am on Warfarin 2.5 years and one of the lucky ones who stays mainly in range. I have also had various tests so as they say ready to go just need the paperwork.

Good luck & many thanks Ray

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