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Hospitals (England)

Jholl profile image
38 Replies

Hi, do any of you know which hospitals in England are meant to be the best for cardiology - specifically ablations? I’m with Blackpool hospital and have had six or seven cardioversions and two ablations since I started with persistent AF in 2013. Nothing’s worked for long. One ablation lasted 4 months, the next only six weeks. Have had to wait a year for each ablation. Have now been waiting getting on for two years for a third ablation, which I’ve been told will have a low chance of success (I know it gets lower for each ablation). I think they said something like 25% but at any rate less than 50% so I’m not inclined to bother. I can’t help feeling that having to wait a year each time for an ablation hasn’t helped in that the longer you have persistent AF the lower the chances are of curing it, and that if you’ve had it I think for more than five years the chances are very low. I’ve now had it for 8 years and four of them have been spent on waiting lists. Which makes me feel a bit angry to be honest. Anyway, given that my last chance of any cure would be a third ablation - they won’t give me a pace and ablate because they say I’m ‘too young’ in my sixties!! - I’m wondering whether I should change to another hospital rather than use the same one again - I’m kind of losing faith in this one. That may be unfair, it may not be their fault. And maybe waiting a year for an ablation (pre-Covid) is standard in all hospitals? But I can’t help wondering if I should use my last attempt to cure this at a different hospital that may be better. Any advice/thoughts/experiences gratefully received.

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Jholl
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38 Replies

To be honest Jholl, this is a very difficult question to answer. From what you have told us, I think your overall assessment of the situation is likely to be fairly accurate but that does not mean you shouldn’t look at all the options. I live in the south of England, so not surprisingly, I’m going to say that that it’s the main London hospitals which have a good reputation for dealing with more complex cases. That said, hopefully there will be others here from north of Watford who know of centres of excellence nearer to you. The logistics of having treatment a long way from home also need to be seriously considered.

If you see London as an option then we can offer you some suggestions, but I think it would be better to wait a while and see what others suggest........

Jholl profile image
Jholl in reply to

Thanks. I certainly wouldn’t dismiss London hospitals even though I’m up in Cumbria, so would be interested to hear recommendations.

in reply toJholl

Not a recommendation as such because I have never been treated there but Barts Hospital tends to be acknowledged as a centre of excellence, with a very accomplished team headed by Prof Schilling. Brompton Hospital in Chelsea and the Harefield near Uxbridge are part of the same Trust and they too have a great reputation. Similarly, St George’s in South London is recognised as being one of the best centres. It’s best to check out their respective webpages to identify their EP’s and from there, you will find out details of their private clinics if you decide you want a fairly quick consultation to help establish your best route forward. As I said, there will be significant and expensive logistics to consider even for a consultation so don’t go thinking you can send me the bill.....😉

Jholl profile image
Jholl in reply to

Thanks for this info.

BobD profile image
BobDVolunteer

I waited a year between each of my three ablations for AF and was then arrhythmia free for 11 years. I think timing has less effect that the patient themselves. I believe that since AF is such a mongrel and individual condition it is unwise to generalise regarding likelyhood of success.

I presume that you have done your own bit to reduce your risks and improve your chance of success such as diet, weight loss, no alcohol etc etc the list goes on. These are as important as any hospital treatment.

Jholl profile image
Jholl in reply toBobD

Yep. I’m not overweight, I don’t drink or smoke and I eat a healthy vegetarian diet and walk every day. So think I’m doing all the right things 😄 It was the consultant who quoted the low chance of success, not me.

meadfoot profile image
meadfoot

It might be worth researching the Liverpool heart and chest hospital. Close enough to you travel wise and has a good reputation. Otherwise i would suggest one the top London hospitals of which there are a number of excellent cardiac consultants.

A second opinion is a good thing if you feel you aren't getting the best for your condition. Good luck.

Jholl profile image
Jholl in reply tomeadfoot

Thanks. I’ll have a look at Liverpool.

Amy2805 profile image
Amy2805 in reply toJholl

I had mine done at Liverpool heart and chest they were amazing. Still looking after me now.

secondtry profile image
secondtry

Out of London, my second choice for an ablation in the South would be Southampton from what I have read principally here. However, it sounds to me like you need one-off second opinion to restore your faith going forward first.

Jholl profile image
Jholl in reply tosecondtry

Okay, thanks.

My 3rd ablation gave me 10 years of normal heart rhythm.

After my first Atrial Flutter ablation .... I've only seen world-class EP's who specialize in AFIB. None them have ever talked to me about the low success rates you describe.

I would seek out the best Electrophysiologist you can find. Fly ... take a train .... whatever. Just get there. Many are doing teledoc sessions ... or contact by computer. There's a vast difference between the EP who only does handful of cases a month .... and one who has seen it all and does ablations daily.

I'm sorry the wait times are so long in England. I've never had to wait that long in the USA.

Jholl profile image
Jholl in reply toThe_Lord_is_with_Us

My consultant does lots of ablations so it’s not that. Can I ask how long your first two ablations lasted out of interest? And also how did you find out which were ‘world class’? Thanks.

The_Lord_is_with_Us profile image
The_Lord_is_with_Us in reply toJholl

My very first ablation was for atrial flutter. I didn't know much ... so I just used a local EP without a lot of experience. That one lasted a year or so ....

When it came back (as AFIB this time), I did more research and found Dr. Andrea Natale and partner Dr. Steven Hao in San Francisco.

In FEB of 2011 Dr. Hao performed my first AFIB ablation ... it lasted until later in the year. In NOV of 2011, he performed 2nd ablation. That one lasted almost 10 years until AUG 2020. (note: it's well known by EP's that often it takes 2 ... sometimes 3 procedures for success)

Dr. Natale performed ablation in OCT 2020. He is one of the pioneers in the field. A widely respected teaching doctor and inventor of many of the procedures and tools used in ablations. He heads up a 14 EP group ... The Texas Arrhythmia Center in Austin.

You can find information about these two doctors if you look hard on the 'net. Dr. Natale is called the 'maestro' of the ablation procedure.

I had said if AFIB ever came back ..... I'm seeking out the very best. It did .... and I did.

Good Luck!

Kevwray profile image
Kevwray in reply toThe_Lord_is_with_Us

I am guessing though that you are with private health - in the UK we have NHS free at point of use. That said I had my first 2 ablations privately & the next & hopefully final at bristol under NHS.Bristol (BRI) has a very good reputation for heart surgery & world class cat lab

Frances123 profile image
Frances123

I think you have answered a lot of your own concerns but obviously you want to keep exploring. I think success of ablation isn’t just about the procedure itself but a small part is how we behave afterwards and not ignoring recovery time. Also exercising, thinking you are cured and can climb Everest a week later isnt a good idea either. Im not sure if I am lucky or not but I’ve never had any triggers. That being said I don’t smoke or drink and eat a healthy diet anyway. Could do with losing about 20lbs though. I have had 2 ablations, the last being end of last October and both done under Dr. Todd at Liverpool Heart and Chest Hospital. A centre of excellence and Dr. Todd has an very good reputation. Personally I can’t speak highly enough of them. I paid to see Dr Todd in Warrington for initial consultation and since then have been seen and treated under NHS. I’m in West Yorkshire so had to travel but was prepared to, to get what I felt was the best for me. I was initially told wait time for ablation was 6+ months but was seen both times within 2 months, one pre and one during covid. I hope you find the help and advice you are looking for.

Take care

Frances x

Jholl profile image
Jholl in reply toFrances123

I’ve always been careful and taken it easy after ablations and I lead a healthy lifestyle - don’t drink or smoke and am not overweight, eat a healthy diet, etc, so it isn’t that. Thanks for the info re Liverpool and Dr Todd. The waiting times certainly sound better! Can I ask how long your first ablation lasted? Thanks.

Frances123 profile image
Frances123 in reply toJholl

Prior to first ablation I was having the most awful runs of symptomatic ectopics which made me feel quite ill each time and this was happening several times a day. My Afib was also symptomatic but to a much lesser degree and frequency. Since ablation those ectopics ceased and I just get what I call the normal ones we all have. Afib returned about 7/8 months after ablation. Difference being episodes were a shorter in duration but more frequent. I think in some ways I could have coped (if it didn’t progress) if I hadn’t been offered a second ablation but I thought I wouldn’t be offered it if EP didn’t think it would help and be beneficial, especially in these difficult times. Also thought why come this far and not try and finish the job. I’m now 4 months down the line and so far no Afib. Hope it stays that way. I really hope you get the help you need. x

CDreamer profile image
CDreamer

Some very good advice in above posts.

Personally I wouldn’t go through another ablation with such low odds of achieving lasting NSR. I had mine privately and didn’t have to wait but had health insurance and that was back in 2013/2014, obviously pre COVID.

Imperial were looking at complex ablation techniques - but that was using not only catheter ablation but ablation of the external wall of the heart - ask and research mini-maze procedures.

Blackpool had a good reputation but may be worth having a second opinion and Liverpool - is much nearer to you than London.

I was offered a Pace and Ablate in my mid 60’s after 2 ablations, second ablation gave me 3 AF free years. The pacemaker worked for me so maybe research who and where is doing work with AF and pacemakers. I still haven’t had AV node ablation simply because I’ve only had 2 episodes of AF since implant in 2018.

I’m in Devon and see EP’s in Exeter - just about as far as you can get from Lancs - the EP’s were trained at Barts under Prof Shchilling. That’s where I would favour but look at Imperial as they do a lot of research.

Your other option is to accept that maybe permanent AF maybe not so bad. Don’t know if you read JeanJeanie’s recent post about being in permanent AF and not spending any more energy on chasing NSR has meant she can focus on living her best life and that living in permanent AF means much fewer symptoms and less worry and much improved QOL as your body adjusts and you adjust to a new norm.

Best wishes

Jholl profile image
Jholl in reply toCDreamer

Thanks for all that. I think I know the ablation technique you mean - hybrid ablation. I did read up on that some years back and asked my consultant about it - he said they did do a few at Blackpool but it was still a newish technique and he wouldn’t recommend it himself for that reason. But I think I’ll research it further. I’ll check out the hospitals you mention as well. Haven’t read that post, I’ll try and find it. Thanks.

spinningjenny profile image
spinningjenny

My recent ablation was at the North West Heart Centre at Wythenshawe, Manchester. I have always been very happy with my treatment there although its popularity means waiting times can be quite long. However I would be inclined to give them a go.

We live in Preston and know people who have been a little unhappy about their treatment in Blackpool although I believe they have a good reputation on the whole.

Jholl profile image
Jholl in reply tospinningjenny

Thanks. Will check that one out.

Barb1 profile image
Barb1

Why do you think that success always lowers for each ablation. I have had 4 and each one has given me longer in SR. The last one 5 years+. My first ablation was after about 10 years in AF - I didn't know it. I am waiting for my 5th ablation (cancelled twice due to COVID) and yes my EP has always said that I am too young for a Pace and Ablate - nearly 68 now! It is our last resort.

Jholl profile image
Jholl in reply toBarb1

I only think it because that’s what I’ve been told by the medical staff there. It’s good that you’ve found the opposite though. My own experience - first one lasted 4 months, second six weeks - tends to confirm what they told me though. Interesting that you will have had 5 ablations. At Blackpool I’ve been told they won’t do more than three. Wonder why places differ? Which hospital are you at, can I ask?

Marlsboy profile image
Marlsboy

Have a read at this - and it's being done in Blackpool

dailymail.co.uk/health/arti...

Jholl profile image
Jholl in reply toMarlsboy

Thanks very much. It looks really interesting, not heard of this before. And at Blackpool too, as you say. I’ll definitely research this!

Singwell profile image
Singwell

Nuffield in Oxford - Dr Tim Betts is one of the UKs leading EPs. Birmingham QEH is also good - normally do 200 a year and high success rate. Waiting for mine there as it happens.

Jholl profile image
Jholl in reply toSingwell

Thanks. I’ll check those out.

cuore profile image
cuore

It is the time spent in persistent AF before the first ablation that determines how much the heart gets remodelled. Aside from symptoms and all that jazz, you could view the first ablation as an attempt to stop the remodelling. For those in persistent AF the trick is to get an evaluation from an EP that specializes in persistent.

For my third ablation, the one that didn't specialize gave me 60% and the one that did specialize gave me 85%. I went with the latter and 19 months later I am still in sinus. My chance of success got higher for each ablation.

Like you, I was told that I was too young for a pacemaker and I am 10 years older than you.

Do also consider that there has been an improvement in AF technology in the almost two years that I had my third ablation. You just have to make sure that you go to a hospital that has an EP that specializes in persistent and that EP is up-to-date in having the latest technology.

Jholl profile image
Jholl in reply tocuore

Ah, I see you’re in Canada. I think if you’re ina different country which operates a health system via insurance payments, or if you’re in Britain but pay privately for medical insurance, then it’s a very different set up from those of us relying on the NHS. The NHS is a wonderful system, to be able to get all this medical help for free (apart from our NI contributions of course), but you cannot access information easily or question consultants about their success rates etc without being frowned upon. It’s very much a ‘be grateful for what you’re given’ system and you’re often made to feel ungrateful if you question anything, sadly.

cuore profile image
cuore in reply toJholl

You are correct that I live in Canada, specifically British Columbia. Our system is similar to your whereby we don't pay for the ablations. But, in B.C. we don't have the luxury of paying privately because private clinics are forbidden here, so there are no private clinics for AF. We do not have a health system that operates via insurance payments. My AF story was a horror one because the "waiting time" for ablation would have put me in permanent AF, so I went to Bordeaux France that specializes in persistent AF.

Having said that, there are write-ups about the EPs that one can access. Plus, different hospitals in a city can have different ratings. In my case, my not-up-to date GP kept me for one year to get me to persistent, then further failed me by sending me to a cardiologist who was not interested in AF and who worked out of a hospital whose AF clinic was in its infancy. I could have been sent to the hospital that has an established AF clinic where hopefully there are experienced persistent EPs.

My suggestion was not towards the success rate of a particular EP, but rather whether his/her bent was towards more difficult ablations or put differently does he do more persistent ablations than paroxysmal ablations? It's a different way of asking a similar question without the more targeting "success rate" that may have a more offensive tone.

Jholl profile image
Jholl in reply tocuore

It’s interesting to find out about how health systems are in other countries. I see we are not alone here in having some inept doctors and a lack of resources! Really interesting that private practice is forbidden in B.C.! I think in this country overall, it’s people with money who can access the best health treatment - though that’s even more true in other countries like the States. At least here we do have some very good treatment via the NHS, that all are entitled to. (It would be even better if this government hadn’t slashed its funding over the years). It sounds like you have better access to information over there anyway, so you can make a more informed decision. I take your point about phrasing the question to the consultants differently - thanks for that.

Jholl profile image
Jholl

Thanks for this. How do you find all that out though? Whether your EP specialises in persistent, and if not, who does. And what kind of technology they have - I wouldn’t even know what questions to ask with the latter. I once tried to find out about my EP and success rates etc by going on the NHS website that’s supposedly user friendly but it was a nightmare to navigate, not user friendly at all and neither was it up to date. For your third ablation it sounds like you sought a second opinion? But how did you set about choosing who to ask? Eg how did you find someone who specialises in persistent?

cuore profile image
cuore in reply toJholl

Steven Ryan's site (in U.S.) does list international hospitals. There are a number of hospitals in the United Kingdom, so scroll down to it:,a-fib.com/international-doc...

On the same blog, the previous page had how to go about finding the right doctor: you would have to translate the methodology to apply to the United Kingdom:

a-fib.com/finding-right-doc...

On the same blog, there is a list of international doctors specializing in persistent/long-tanding:

a-fib.com/steves-list-speci...

In the above list, you will see France which is near you listed as the Bordeaux group. I went to France for three ablations which I paid for myself. But, they do consultations. You could travel there (granted covid times) or get a phone consultation. I would suggest Dr. Jais who did my third ablation. Dr. Hocini was also involved in my ablations, so that would be another one. In any case, they both do international ablations. The above list was written some year ago in terms of techniques, but they would confidently be up-to-date.

In my case, the waiting time was horrendous like yours, so it was not a matter of second opinion. It was a matter of finding a centre that specialized in persistent and doing the ablation fast. The time from application to ablation was one month, but I had to pay for it, not my country.

In terms of technology, if they specialize in persistent, they would have the latest.

In terms of finding a specialist in the UK, I typed in the address bar "persistent AF specialists in the UK" and the first address was:

a-fib.com/steves-list-speci...

This site is supposed to contain top EPs, so you would have to read each if persistent is listed:

topdoctors.co.uk/doctor/car...

You could perhaps have a consultation with Dr. Sanjay Gupta for a recommendation for an EP who specializes in persistent.

You have a lot of reading material now. You are welcome to ask me more questions and I will quickly do a research for you. You could also pm me and I will answer.

Jholl profile image
Jholl in reply tocuore

Wow! Thank you so much for all that - that’s really kind of you! I’m bowled over! I will definitely check out all the links as soon as I’m able - have to work this weekend but will get on to it next week. Thanks again. I wish I could afford to go private, but I’ve read an ablation costs about £17,000, so I definitely couldn’t ☹️.

Jholl profile image
Jholl

My last two messages are in the wrong order by the way, ha ha.

TracyAdmin profile image
TracyAdminPartner

Please don't hesitate to contact us at AF Association if you require any specific advice or information.

Jholl profile image
Jholl in reply toTracyAdmin

Thank you. I might well do that.

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