I'm considering having an ablation as I have really struggled with the meds, and as I'm asthmatic my options are limited. I was very unwell on Bisoprolol and it didn't stop my attacks of fast AF in the night, and I'm now on Diltiazem which is not keeping me in rhythm, and I suspect is actually adversely affecting my rhythm as I didn't have constant rhythm problems until I went on it. The arrhythmia nurse has informed me that as my condition is not considered life threatening they will not change my medication, or consider me for an ablation on the NHS. So I have emailed a private EP for advice and price but have not yet had a response. I just wondered if anyone on here had gone private and could give me a ball park figure for the cost? Also out of interest, could you tell me where you had a private ablation? I'm in Swindon so my nearest private EP is Oxford, but I'd travel further if I had to. I just want to feel well again.
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I find that unacceptable. Ablation is never life saving , merely for quality of life and many of us here have had multiple ablations.
Yes make a private appointment but ask if you can be transfered onto NHS list if the EP will accept you. I don't know the current prices but think £15,000 plus hotel costs of the hospital at circa £500 per night. Remember if thing are not simple costs can rocket post procedure.
Thanks for that Bob. I knew it wouldn't be cheap but that kind of cost is way beyond our means so I private procedure isn't going to be an option for me. And I have zero chance on the NHS as the last letter the arrhythmia nurse sent to my GP asked the GP to provide diet and exercise advice to me and stated that they planned to discharge me from cardiology and they did a 48 hour tape a couple of weeks ago before doing that. Sods law, my heart was really well behaved the whole time on the monitor, and the very next day it went nuts and I was out of rhythm for most of 9 days. I haven't managed to speak to an actual cardiologist on the NHS, I only have access to the 4 arrhythmia nurses of the apocalypse, and they tell me to do more exercise and get some counselling. I exercise twice a day and have lost 4.5 stone since last March. And I got counselling just to 'play the game' and the counsellor said it would be strange if I didn't have any anxiety given how ill I have been for 7 months and how little help I have had. Anyway, I didn't mean to turn this reply into a rant! I guess I'll just have to try and tough it out and accept having no quality of life and feeling 40 years older than I am. Unless Dr Rajappan does ablation on the never never 😆
I’m shocked! I can’t believe the nurse said that. If you can’t tolerate the meds and they aren’t effective you should be referred to a cardiologist at the very least, but preferably an EP and I believe it’s up to your GP to refer you. Diltiazem doesn’t do anything for the rhythm, it affects rate, BP and relieves angina (I take it). You could, if suitable, be prescribed an anti arrhythmic as well and if that doesn’t help NICE guidelines say you should be offered an ablation. I feel really cross on your behalf 💜
Thanks Buffafly! I'm fairly cross myself. Please see my reply to Bob above! My GP tried to refer me to an EP and I got the paperwork through and selected Oxford as my preferred EP Dr Rajappan is there and it's less than an hour from home. Oxford JR contacted me to say they had canceled the appointment I had made as I was already under Swindon after my admission and diagnosis. I don't have access to a cardiologist, only the arrhythmia nurses who seem to think it's all in my head. I wish it was! I did in the middle of all of the above managed to have a telephone consultation with Dr R who said I could try Flecainide , but that put me badly out of rhythm to the point I had no rhythm at all after 5 days so I had to stop it. Looks like I'm in a pickle for the time being so I'm just doing what I can to stay healthy and away from hospital, and hoping this progressive rhythm problem doesn't move too quickly so I can get a covid vaccine and actually go to the hospital when it kicks off so they actually have a record of the bad behaviour and don't have to take my word for it, or not as is now!
Get a Kardia (one lead). Costs about £100 but needs a compatible smartphone. It records a rhythm strip up to 5min a time which is accepted by cardiologists and EPs. That will sort the unbelievers - maybe not those nurses 😱 Congratulations on the weight loss, should be helpful. And when cardiology have discharged you you can see an EP.
Thank you for that. Your advice was right on time! I actually have a Kardia but I didn't think the professionals accepted the readings. I had an attack of fast irregular heart beat just as I was falling asleep last night and I managed to catch it just as it settled down, and then again as it flared up again as I was falling asleep again. I didn't get the strongest part but the readings show abnormality so that's something. fingers crossed it will be accepted and help me get some progress 😀👍
GPs have been known to dismiss Kardia because they think it’s one of those phone apps - my ex-GP wrote a sniffy letter to a cardiologist about my recordings but I got a quick ablation out of them! The cardiologist and EP were impressed. If your palpitations tend to come and go it is worth taking recordings one after the other until you get a very good one, not encouraging you to become obsessed of course. If you only get ‘Unclassified’ results it is possible you are having bursts of ectopics which are very distressing but not serious medically. Good luck!
I’m asthmatic too & was in bisoporol and flecanide for years ,until my asthma got really bad , got 2 stents in heart ,meds changed from that to verapamil,,, which helped , please look closely at meds you've got ,I’m thinking that’s for high blood pressure ,unless I’m wrong ,,,,I’m thinking you need to get appointment with not a nurse ,,,,but a cardiologist at least ,,,, certain drugs don’t work too well with asthma , but there’s quite a few that do ,,,,it’s trial & error sometimes ,,,took me a few years to get mines sorted at first ,,good luck
As you're in Swindon on the mainline, I would go to London where there are a wealth of excellent EPs. My cost was around £20K, paid by BUPA. It was quite complex, using both cryo and RF. Also agree with the other comments above.
That's great, I'm really pleased for you. It's not just one nurse, it's a team of about 4 of them, and they are in Swindon GWH. They are very nice, but I get the strong impression that they think it's all in my head, and they think I'm just not trying to improve my condition. My symptoms and side effects don't fit with the norm so they won't believe it's down to the medication, and I can't prove it is. But following advice from Buffafly above I am now using a Kardia device to record my attacks so hopefully that will help.
I was advised to buy a Kardia by my cardiology consultant Dr Hyde in Swindon, he said it was the quickest way to get proper evidence of af. I did, and with the help of those results he referred me straight to the Bristol Heart Institute (my choice to go there). He quite rightly said that af was not in his area of expertise. I have only ever spoken to arrhythmia nurses there. TBH I didn't know there were any in Swindon. You definitely need to see an ep, it is not up to a nurse to make those sorts of decisions, an ablation is all about quality of life, which really needs to be improved for you. I have asthma and had to stop taking bisoprolol too, I do use it as a pip if I need it though. Don't give up. The BHI were sending all their patients to the Spire for their ablations from the middle of last year and I would think with Covid as it is now, they still are.
Hi Cally. I just wanted to drop you a message to let you know that I managed to get a private appointment with Dr Hyde and I sent him a selection of Kardia recordings. He is referring me to an EP in Oxford to get an ablation. I can't tell you how relieved I am. Hopefully the wait won't be ridiculous. Dr Hyde is fantastic and I wouldn't have found him without your help so thank you so much for taking the time to reply to my post. You literally switched on a light at the end of a very long dark tunnel. When the world sorts its self out you will have to let me buy you a nice big slice of cake in HYDE Road garden centre to say thank you! 😀
Fantastic news. He really is a good cardiologist. I remember him once telling me that he wasn't allowed to offer me a follow up appointment with him, but I could request one. My answer to that was, "can I please have a follow up appointment in three months", he replied, "of course you can". He had his own way of getting around the bureaucracy, which was wonderful. A slice of cake in an appropriately named Garden centre sounds good to me. Fingers crossed you get an appointment in the very near future. 😃
I am in the same place as you, with asthma, at the moment although my GP has referred me to an EP. I'm not sure how long it will take to see him in the current climate. I don't have an arrhythmia nurse here so I've found that the only thing I can do is get in touch with my local cardio secretary. I thought having a nurse dedicated to the problem would be great but it seems not always! It's seems that you have been fobbed off and I I think you should see an EP privately as soon as you can but at the moment it could take a while. I'm still waiting for an appointment. I hope you are able to sort this out as soon as you can. Keep well and good luck!
This is a very unhelpful comment by the nurse. And makes no sense. Is she talking about operations in the middle of Covid being limited to those for life saving? That may make some sense, only risking it in a pandemic if your life is in danger.
I would speak to your GP and ask to see an EP directly / get a second opinion. Ablation isn’t limited to life saving, it really isn’t. On the NHS you are entitled to a second opinion and can travel to it if not much choice in your locale. I have done this easily in the past. Do not settle for what this nurse has said, unless she knows something she isn’t spelling out, ie it is because of Covid. The issue with private is that you don’t know exactly what the cost will be, if any complications it can be a blank cheque, and also private clinics vary on the access to acute care in an emergency, acute care is usually NHS. Good luck!
I had my ablation in Leicester last year, it cost about £15000, paid by health insurance. It was done privately, but in an NHS hospital, which I felt was reassuring. I did have to agree that I would cover costs of further treatment if anything went wrong, but I trusted my EP to do a good job, which he did.
Please consider that going private may not help you, at this current time. I live in Surrey and had my March 2020 ablation cancelled due to COVID and recently my re booked January 2021 cancelled. Both were booked privately not NHS. One within an NHS hospital and the other at a Spire hospital.
Oh no, how frustrating for you. I really feel for you, and hope you get your procedure soon! Was there a reason you had to go private or was it choice? I'm just wondering how many other people are having the same trouble as me getting access to NHS services.
It was choice and has been worth every penny for me. Normally because of ease of access, speed, unrushed consultations always with main man. COVID has changed that. I have no idea how people are still getting ablations during these times. It frustrates me.
I am appalled that the nurse reacted this way. Has she heard of quality of life? Are you under a consultant cardiologist? Re all the medications I have been a 'trial' for the cardiology team and pacemaker team and the whole time they have persisted in trying for me to feel well, changing this and that. I have received ablation and been told another may be on the horizon whilst recently in hospital (which I dont want). There has been no question of a 'refusal'. Just massive encouragement. My best wishes to you.
Thank you. I'm not under a cardiologist on the NHS but have paid privately to have a 7 day tape and eco scan as the NHS stopped doing them when I needed mine after diagnosis. I have also spoken to a cardiologust in London a few days after diagnosis as I was so ill with the meds and couldn't speak to anyone at the hospital and my GP didn't know what to do with me. I have also spoken privately to an EP, and I have emailed him again to enquire about ablation. Hopefully I'll hear back from him with at least some advice. I'm sorry to hear you're still suffering and hope you feel well again soon.
I wish you all the best. Cannot understand that your care could not be automatically undertaken by the NH S. I cant sing their praises enough and I have been a tough one (and still am). They are right on the ball. Have you spoken to your NHS GP? and go from there.
You will get shoved around from pillar to post at GWH! Ask your GP to refer you to Oxford Heart Centre where you will be seen by EPs. Covid notwithstanding, you should get an ablation date within a year and probably sooner if you're lucky. I too live in Swindon and am on my second ablation!
They mean well at GWH but they haven't got any EPs or a Cath lab(as far as I am aware).
Thank you. My GP did refer me to an EP and I got an appointment at the John Radcliffe but they cancelled it and said I had to be seen by Swindon. But I only get access to the nurses at Swindon, not a cardiologist, and the nurses are desperately trying to discharge me. I'm hoping there was enough on the recent 48 hr tape they did to prevent that, but as I had 2 really good days on it I'm not sure it will help me. But I'm now taping my own on a Kardia so hopefully that will help. Glad to hear you have managed to get proper treatment despite living in Swindon. I'm genuinely considering selling up and moving to get access to better health care as we seem to be in a cardiology black hole here.
My last EP consultation I paid for privately, cost £150. It was held over zoom, I say this because even if you can’t see the EP it would still be possible to have a virtual consultation. You need some advice for reassurance and to put your mind at rest. Discussed with EP the need for an ablation, the discussion was solely around the quality of life impact.
I have since made lifestyle changed, lost 3.5 stone and abstaining from alcohol. No need for blood pressure tablets now. Touch wood been in NSR now for 5 months.
I’m sure you will get your ablation on NHS if it will bring about quality of life improvements. Keep your chin up.
I had a friend years ago,living in oxford, who used to go into Aand E when her heart problems became difficult and the GP was not listening. Worth a try a try.i got very good treatment from docs. at AAU on the 4th floor of the J.Rad. in Nov and Dec 2020. Had peculiar hear arrythmias and called out the 111 service who sent an ambulanceX4 times. over a few weeks.AAU is open 9am until 9pm all days .You have to ring during Covid and tell them why you want to come in.They are unlikely to refuse you if your situation sounds serious. Allow time to wait there for a few hours but you will l see good docs.
Also looking for a private ablation procedure. I've had SVT but only very periodically. Not life-threatening or even life-limiting. Quite sporadic episodes - 1988, 1991, 1993, 2000, 2005, 2006, 2010, 2013, 2017, 2019. No NHS hospital would treat such a case. Abroad, there are options. One is a specialist hospital in Katowice in Poland with American trained doctors. I considered having it done in Slovakia in 2017 (I lived there for 12 years, but I was due to leave quite soon. I moved to Kurdistan. One private hospital there had variable results and a cardiologist said they usually send patients for ablation to Tehran - that raised various cans of worms. Even though periodic and mild, I think it's wise to get it seen to as it may create further complications later in life.
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