2 Year wait for ablation

[Scot01]

Hello everyone,

I am new on this site but have looked in frequently over the last few years and have found some very helpful information.

I have had PAF for 7 years, I am now 67, and have gone through various combinations of meds but currently on Verapamil, Flecainide and Apixaban. It has been hard.

In February last year, 2022, I had a private ablation in Glasgow which did not fully work and also gave me esophagitis and awful stomach problems which lasted until September, my consultant said he may have overheated my esophagus and my vagal nerve. Eventually I recovered and over the winter I exercised and tried to feel reasonably normal again. When he offered to book me in for a 2nd private proceddure I expalined that we could not afford another £16,000. As the Consultant also works for NHS so referred me for a NHS procedure at the Golden Jubilee Hospital in Glasgow. He said in December last year it would be 9 to 12 months max.

At the moment I am on 120mg Verapamil, 250 mg Flecainide and 2x Apixaban daily, have breakthroughs lasting 30 mins to several hours 1-5 times per week. Much better than prior to the ablation but disruptive and tiring anyway.

I called their booking office in April, the staff were so helpful, and they advised I had a 32 week waiting time which would finish about September. Yesterday I called them again to find out if there was a rough date I could expect to be called and was told by the same young lady that the waiting time is now 2 years! I am pretty upset and shocked that I wasn't advised earlier and there is no explanation as to why.

I would be very pleased to know your thoughts and suggestions on this.

[10gingercats]

Put yourself on the depts cancellation list.People do drop out. It is worth it.People do cancel for all sorts of reasons. Nothing to lose.

[Scot01 in reply to 10gingercats]

Thank you,

I asked to do that but apparently as it is a 2nd ablation they have to have all the right people and equipment there at the right time and therefore it is very unlikely that would happen

[Rainfern]

That sounds awful for you, and really doesn’t bode well for those of us in similar situations. Two years is a ridiculously long time to wait when you are in that kind of half-way land and discomfort. I’ve been told the waiting list here in Devon is 7 months for ablations but maybe that’s wishful thinking on their part. I have been considering using some equity release for a first catheter ablation but maybe I’d be better saving it for a private mini maze procedure which I believe has a better success rate (though comes with greater risk) than ablation. Wishing you good luck.

[Scot01 in reply to Rainfern]

Hello Rainfern,

I took out equity release for my first one like you. I truly hope you have a much shorter wait than I seem to have, the whole country seems to have hundreds of thousands of people in the long painful grip of waiting for appointment both in and outpatients.

I also had a bad fall in March walking in the hills around us, I tripped and fell on a large tree stump, had a head injury, and hurt my hip. A&E were excellent on the head injury (7 staples)

but didn't have time to check anything else. 2 months later I was diagnosed with Osteoathritis of the hip and the fall has knocked all the cartiledge out of it so it's bone on bone. I am having Physiotherapy now and it is helping, but not enough, and the next step is a referral to an Orthopaedic Consultant re: a hip replacement. I am on cocodamol 8/500 for pain or the next strongest one 15/500 if it is bad.

I am managing to keep my chin up and managing , walking 1mile a day and exercising , houskeeping, gardening etc. so keep moving which is good for both.

thanks again for your advice and best wishes with your wait, hope you have a surprise!

[Rainfern in reply to Scot01]

Thank you so much Scot. You have certainly been through the mill. My sister is one with both hip and heart issues and has such a strong spirit and positive attitude to life like yourself. It’s great you keep walking, and the Scottish scenery sure is good medicine. We’re up to Fife coast and then south Cairngorms in September where my husband worked many moons ago. I hope you get some better answers soon.

[Scot01 in reply to Rainfern]

Rainfern we are off the the Fife coast in September, we have been there many times and love it. A walk on Kingsbarns beach makes life look like a peach!

We live on the west coast where there is about 6 times more rainfall per year than the east coast so make sure we go for a few visits ther before we get too rusty!

Have a lovely trip, there is so much to see and do I have no doubt it will be great.😀

[Rainfern in reply to Scot01]

Oh yes Kingsbarns is beautiful! We’ll be Boar Hills way - lovely walk through woods to sea there. Saw dolphins last time there and whales on west coast a few years back! The west is gorgeous - Glenelg, Skye - don’t get me started! 😀

[TopBiscuit in reply to Rainfern]

Hi Rainfern

I'm interested to know why you say that the mini maze comes with great risk than ablation?

[Rainfern in reply to TopBiscuit]

Hi TopB, it was just something my EP hinted at, though he has put a potential referral for mini maze in motion for me at Barts should ablation(s) prove unsuccessful. I guess mini maze does involve greater invasion, but I’m not afraid having survived open heart surgery at age 15 and all in one piece 55 years on!! 😀

[Foxey2]

Blimey that’s not good, I’m currently waiting for a 2nd ablation at St Barts in London and my consultant told me it would be about 5-6months wait, I hope it doesn’t jump to 2 years also 🙁

[Scot01 in reply to Foxey2]

Thank you Foxey2,

I live in Scotland and for some reason I am having another cryoablation (eventually).The

bookings office told me that they only have two EPs doing his in the whole of Scotland.

At the moment I would take anything, so will check with my GP who I see next Tuesday.

I am sure your wait will be shorter.

[Buffafly]

Not sure I’d want the same EP……that was a very serious complication 😰

[Scot01 in reply to Buffafly]

That is a very good point Buffafly, but here in Scotland we don't have the right to choose who we go to and have to take what we are offered, or not as the case may be.

As above I will ask the GP next week if I can have it done without a GA as the booking office said that would be a much shorter wait, although apparently the consultant put a note on my file to say I would need a GA. I haven't been asked.

[wilsond]

I had a long wait,ask to go on the cancellation list. They are happy to do this as saves wasting theatre time

[Scot01 in reply to wilsond]

Thanks Wilson,

I asked to do that but the booking office told me it is a 2nd ablation they have to have all the right people and equipment plus my consultant there at the right time and therefore it is very unlikely that would happen

[Rainfern in reply to Scot01]

Have been told the same

[wilsond in reply to Scot01]

Ah sorry to hear that.

[Kendalghost]

I've been waiting to see my EP since March 2022 and when I do get to be seen and to get on the waiting list. I understand from an AF nurse that I too will wait 2 years for my second ablation. Another cardiologist thought about a pacemaker but wants to hear what Blackpool thinks. So you are not alone in waiting a long time.

[Scot01]

Thank you all for your replies,

It has been so helpful just to discuss it with someone, as has been said on this feed before, no-one who hasn't experienced it really knows how it feels.

Kendalghost, it looks as if we are in almost the exact same situation as I haven't seen my EP since he did the procedure, the "follow ups" were by telephone. I don't have a Cardiac Nurse, when I asked my GP about it she said if I were referred to the only one we have in this area it would take months for her to get back to me as she is so busy. I would be interested to hear how you get on.

My west wishes to everyone🤞

[wilsond in reply to Scot01]

I have found the BHS helpline very good,it is staffed by cardiac nurses. Xx

[Scot01 in reply to wilsond]

Thanks Wilsond, I will try them if my GP appointment doesn't give me some answers next week - hopefully it will.

[Speed]

There has been much discussion about how the performance of the NHS in the devolved countries has fallen well behind that of England (who are not exactly a shining example) - the reality rather than the political rhetoric.

I have this week just been quoted wait of 9 mths in Birmingham. This would be my 3rd ablation and I have been put on the cancellation list - this is not a problem here though there is a chance our situations are somehow different. This will be my first for AF following 2 for A Flutter but both of these were cancellations.

Is there an option in Scottish NHS to get treatment in England?

I do have to add that my treatment in Merthyr for a major trauma (multiple fractures and partially collapsed lung - 6 days in hospital) was excellent as was the follow up care in Warwick. But that is A&E as opposed to consultant lead elective.

[Scot01 in reply to Speed]

Thank you Speed,

This has crossed my mind, especially with the recent announcement form Steven Barclay,

but don't know if that will wotk out. Again I will ask my GP on Tuesday.

Hoping yours is 3rd time lucky in Birmingham, also that you get it earlier.👍

I am so lucky to have all the suggestions that have been put forward, it has made me feel a lot better. the main thing I want is and answer - why go from 32 weeks to 2 years?

[Scot01 in reply to Scot01]

Hello to everyone who replied to my post on a 2 year wait for ablation.😀

Great News!

Today I called and discussed the change in waiting time with the same young lady I spoke to on Thursday, she was her usual very helpful self and I asked her if I could have the ablation without a GA as that is what is causing the extra year wait.

She put me through to my Consultant's secretary who was amazing, when she told me it was different from a GA, I saaid I had two babies with only gas and air and she laughed and said she would do her best.

She contacted the consultant when she could get through to him and called back a few hours later to say he agreed I could have it with sedation!

So now being scheduled for October, and I can hardly believe it!

Thank you all for your kindness and sympathy and your wonderful suggestions at a very down time for me. For those of you with a long wait it may be worth going down this route if you possibly can.

I will let you know if it all comes toghether.🤞