Not sure what to do next

Went for my post op follow up yesterday, after 2nd ablation last October. Pretty much convinced that they would say this hadn't worked after I'd logged 40+ episodes of arrhythmias, fast AF/atrial flutter. Was able to show the doc an Alivecor reading from one of the episodes, and had previously sent one to the arrhythmia nurse at Oxford, who confirmed it was AF. The end result is that they'll put me on the waiting list for a 3rd ablation, which could be as long as 9 months. However, I was also told I could have it done sooner in London if I wanted (I wasn't on the ball after waiting 1 1/2 hours to see anyone so didn't think to ask which hospital).

Apart from the logistics of getting home from London feeling pretty rubbish after a GA and the op itself, which is how I've felt after each time, I'm not sure what to decide. Do I wait and go with the hospital that has already done the last two ablations, or chance a completely new hospital and team in the hope that they might get it right for me next time? Has anyone else had this opportunity and what did you end up deciding? I would really value your opinions and experiences.

Apologies for long and rambling post and thank you for reading this.


12 Replies

  • Sorry to hear you are having a tough time and still not better after two ablations. We have a long waiting list where I live and I was offered a procedure at one of two other centres in the country. Do you know if your hospital has an agreement with a London hospital, given that they have suggested it they probably do.

    The offer is sometimes made because of the long waiting list where fines are incurred for not meeting government imposed waiting time targets. If this is the case it usually works by the procedure being undertaken by the agreed hospital then the follow up and ongoing care returns to your home hospital.

    Things to think about: Have you confidence in your current team. Are you considering London just because of the waiting time of 9 months. Which London hospital would it be. Who would be undertaking it there and would you have a prior consultation or would you just go for a one off treatment. (Your host hospital would pay for your travel and for someone accompanying you plus accommodation. This is assuming your local hospital is offering you this option rather than you requesting it).

    I am having my first ablation next week in London but I have chosen the consultant and hospital rather than go to the one on offer. Purely personal preference as there was nothing wrong with the one on offer whatsoever. However I would not have undergone an ablation without a prior meeting and consultation (I want to meet and shake the hand of the person prodding about in my heart in advance lol).

    Yes the travel, being away from home, no wider family visitors, a strange environment and getting to know a new team is a big worry but I have great faith in the consultant who seems very capable and thorough.

    Just hope I am feeling as confident when I walk into the hospital.

    Think long and hard and do your research. Be well. Hope this has helped.

  • What bad luck you have been having - hope it picks up. I would phone up your hospital and speak to the consultant's secretary and ask which hospital / hospitals they were thinking of and also ask the key (good) questions raised by meadfoot. That way you have some more information on which to make an informed choice.

    I am waiting for my first CA and was told go on one day, have the CA and then only one overnight stay. In which case, bearing in mind that you will be having the procedure (and you know what you will feel like on that evening), would it really matter if you didn't have many visitors that evening?

  • Surely this is the problem with the choice people now have of where to have treatment.

    the places that have an good reputation are bound to have a long lead time.

  • Popularity is not the issue, it is usually lack of resources. Here in Devon we had a new consultant to conduct AF ablations, a new cath lab refit and then the Comissioning Group put a moritorium on 'new procedures'. AF ablation was a new for the hospital but before we had a consultant competent to do the procedure, we were referred to either London or Bristol.

    The moritorium has been lifted and he now has the equipment to do the procedures, after it sat in a container for some months, but he only has access to the cath lab 2 days a week, so still has to refer patients to London - because that is where the resources are.

  • Can you not phone the cardio dept at your hospital and ask which London hospital it is they are suggesting? Then re-ask the question. It could be one of the very best !

  • Just remember that you will not be allowed to travel home alone after the ablation. You need to be accompanied in case of any bleeding the next day and in an ideal world not by public transport. You can sometimes arrange a hospital car driven by a volunteer. I arranged this for my first and then messed up by having to stay in another night due to problems. Other times my wife had to drive up from Devon to London to pick me up (9 hours round trip). Seems she can't survive without my

  • Bob!!

  • I travelled to London for 2 Ablations. If you go ahead you need to be very organised, for instances, ensure that the hospital knows you are travelling a distance and ask that the pre-op tests could be organised for the afternoon before or the same morning. You will not be able to travel on your own so someone to drive you home. Public transport was out for me as there was no way of avoiding steps and stairs and it would have take. Just too long. I found it helpful to have several pillows in the car, plenty of water and something to rest my feet on to elevate them. I was very comfortable and went to sleep as I was still drowsy from the meds.

    We found an hotel local to the hospital the night before.

    I find it interesting that in the UK we don't appreciate how local our services are. We seem to have a very limited view of travel. When you travel to other countries and talk to people seeking treatment in US or Australia, Africa etc who have to travel often for 24-36 hours and often more ( I talk to a lady who has a 3 day trip to see her consultant) it brings it home just how lucky we are! Most of us rarely have to travel for more than 4-6 hours to reach a major clinical centre.

  • I am also under the John Radcliffe and am awaiting my 3rd ablation.

    My last appointment was in January but I have since received a letter regarding the London option.

    The two hospitals (but you don't get to pick one) are Hammersmith and St Thomas'.

    They offer up to £50 per person (maximum you and 1 other) for the procedure - not per day. This is only payable when you supply receipts for the train/ car parking - I have contacted them to ask about mileage/hotel accommodation but have been told that the decision maker is on holiday for the next 2 weeks. The train for me is £56 per person.

    If you decide to go with this option you are removed form the Oxford waiting list. You need to stay in hospital for 2 nights as they will do the pre-op assessment the day before.

    The follow up appointment will also be in London - waiting to hear if they will pay expenses for that.

    After that the London hospital has to refer you back to Oxford if it hasn't worked - or you can stay with the London one.

    At the moment I'm feeling inclined to stay at Oxford - I waited 8 months for the last one - but will wait for them to get back to me regarding the expenses.

    Hope some of that helped.


  • Thanks Sharon, that's very helpful to know. I think in the end I will probably opt for the same, but good to have so many different people's point of view.

  • Funnily enough I heard from the JR yesterday - they've had a cancellation and I'm now having it done on Friday next week!!! Good thing I hadn't decided to opt for London.

    The only problem is that they previously wanted a 5 day heart monitor for which I am booked in for today and they have told me to still get it, so I am there today for that, tomorrow for the pre-op assessment, Tuesday for the end of the 5 day monitor and have to go to the doctors for my INR on Monday - boss not overly happy but luckily is very understanding!

    Have you asked to go on the cancellation list?

  • That's great news Sharon, best of luck with this next one. Shame you have to travel to Oxford and back so often (do you have far to go?), but sure it will be worth it in the end.

    Hadn't thought about asking to go on the cancellation list and quite honestly not too bothered about having to wait (atm!!) was really just thinking that having the op done in London might mean a better chance of success. Really, a good outcome is what any of us want in the end, isn't it? Not too sure about what to do if this next one doesn't work, think it might be worth seeing one of the EPs privately and having more than a 10-minute consultation with a reg who had to keep going in to ask the consultant what to do next. Trouble is, at the JR, because there are four EPs, it's difficult to have a one-to-one relationship with any of them, I had never met the one who did my last procedure and he wasn't around at the follow up either.

    Anyway, I'll be thinking of you next Friday, and please let us know how you get on.

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