Looking for some advice please..... - Atrial Fibrillati...

Atrial Fibrillation Support

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Looking for some advice please.....

nikonBlue profile image
16 Replies

As I was reading a post about TIA and anticoagulants there was mention of the member seeing an electrophysiologist and my query is this......I've never heard of anyone here in Scotland seeing one of those and I wonder how I'd go about it myself.

I've been struggling a lot with my AF as in virtually every day the old beats go haywire, tightness in my chest and very uncomfortable sharp pain though I have to say the pain is more to the right she of my chest. Doing it now as I write this and has been for 2 days now! I take 150 Flecainide twice a day and am about to take that extra 50 that I'm allowed to take. I had a heart scan done in October and have heard nothing and I appreciate there's so much going on with Covid but I'm also getting a bit anxious as to why I'm getting these symptoms so often and lasting hours and now days. I've had numerous halter recorders and my cardiologist did mention ablation like 28 months ago when I last saw him. Heard nothing since but I know the hospitals are up to their ears in it just now.

Doesn't stop me from being a bit worried.

I had breast cancer in 2015 and just 'passed' my 5 year check up.

Should I maybe be seeing an EP?

Sorry for the long blurb!! Stay well all.

Blue :-)

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nikonBlue
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16 Replies
BobD profile image
BobDVolunteer

IMHO yes.

nikonBlue profile image
nikonBlue in reply to BobD

hey BobD,So, how do I go about that given that I've never heard of anyone being referred or is it something I can ask for from my gp?

thank you,

Blue :-)

Vince1001 profile image
Vince1001

I was thinking of Spire Edinburgh. Douglas Elder. I'm no idea if any good or not. Don't think you need a doctor's referral - can get a consultation direct.

Vince

spirehealthcare.com/spire-e...

Yes Blue, seeing an EP is the best thing to do. Not sure how it works in Scotland, but here you normally are referred by your GP. It’s possible your GP doesn’t know a competent EP and the risk is he opts for a Cardiologist and then you’re then back to where you have started.

Take a look at this list of Specialists by clicking on the link and select “UK” in the search box. Scroll down until you see some names from Scotland and do some research, maybe select a few and ask the forum members if they can recommend one. Cleopatra170710 did something similar in a post a couple of days ago.

heartrhythmspecialists.org/

You could then ask your GP to refer you to the named EP. Alternatively, if it possible, you could seek a private appointment which should cost less than £300 (be careful because any tests will be expensive). Good luck.......

I’ve just looked and I could only see 2 or 3 entries for Scotland so there must be more. Maybe check out hospital webpages!

nikonBlue profile image
nikonBlue

Thanks everyone. I'll check it out. X

Desanthony profile image
Desanthony in reply to nikonBlue

Either your GP or Cardiologist can refer you to an EP.

Buffafly profile image
Buffafly

As your cardiologist already mentioned ablation he should have an idea who to refer you to. You just have to catch him......

Get the best EP you can. If you have to fly ... do it. I live in Washington state and flew to a specialist in San Francisco for two of my ablations. A recent third was performed by a world-renown EP in Los Angeles.

Frances123 profile image
Frances123

Hi NikonBlue. If it were me I would see an EP. Can’t remember who said it but I love the analogy of cardiologists are the plumbers and EPs are the electricians. Check the list out that Flapjack sent you and I’m sure you will be able to find someone near to you. I saw my EP privately (£250) for initial consultation and then transferred to NHS for treatment. I think it depends who it is as to whether you can self refer or need a GPs letter. I had to get a letter but wasn’t a problem. If you are able to afford the cost of an initial consultation then for me that was the way to go and saves a lot of waiting and worry time.

So pleased for you on your 5 clear years for breast cancer. It’s 3.3 years for me and still counting.

Take care.

Frances xxx ❤️

CDreamer profile image
CDreamer

Scotland & Wales does work differently but NHS Charter says you have the right to be referred to anyone of your choosing and your GP can refer you. You will need a GP or cardiologist referral for an EP to accept you.

I agree that it is important to get the best EP so do your homework and it’s worth travelling for. I live in Devon but travelled to London as there was no EP in Devon at that time, thankfully there are several now.

Good luck.

momist profile image
momist

I second what CDreamer says. You really need to see an EP. Ask your GP first, and if that doesn't work then possibly change your GP? There is a recurrent meme on this forum that we who suffer AF must be proactive in our own care. Not all medical people are very aware of AF, and even many cardiologists miss-understand or under-rate it. Would you call a plumber to sort out your electrical faults?

Rosemaryb1349 profile image
Rosemaryb1349

Hi, I live in the North of Scotland and have had 3 ablations done at Aberdeen by Paul Broadhurst. I was referred firstly by my GP to a Cardiologist at Inverness who subsequently referred me on to Aberdeen. Good luck.

SingingT profile image
SingingT

Hi, I am in Scotland and was advised not to have an ablation by my cardiologist. However, I asked if I could have a second opinion and he agreed without hesitation and I saw Dr Murphy in Glasgow ( Royal). The consultation didn’t go well. It was late afternoon and I think he was tired. I didn’t have confidence in him from then on and didn’t take up his offer of ablation with 70% chance of success. Whatever that means. I am thinking of seeking a private consultation with someone else so if you hear of someone good in Scotland let me know. Cheers.

nikonBlue profile image
nikonBlue

hi everyone,thank you all for the comments.

I have contacted a Dr Douglas Elder who is an EP and I can see him in Edinburgh or Dundee. Edinburgh would be easier for me to get to.

anyway, I'll see what they say in response to my enquiry. I'm not in a position to pay so will need to be referred by gp or cardiologist, if indeed I can find him!

Some good news this morning though and that is that the heart scan I had in October is 'fine' :-)

thanks again guys and I'll let you know how things go from here.

stay safe and well,

Blue :-) x

Melchet profile image
Melchet

Alternatively, try The Edinburgh Clinic on Colinton Road. I had a good experience there.

In June 2018 at age 66yrs , my PAF was breaking through Flecainide (2x100mg/day) two or three times a week ie. a much higher frequency than I had been accustomed to. Despite multiple 24hr tapes and ECGs, nobody could catch it, so I got myself a Kardia device (£100 on Amazon UK) and printed out the evidence of AF.

I was anxious about this new development and did not want to wait months on the NHS so I arranged a private consultation with an EP at Edinburgh Clinic for around £200. Saw an excellent EP who examined the Kardia printouts, which he said were of excellent diagnostic quality. After confirming the PAF diagnosis, he gave me an echocardiogram on the spot which confirmed no structural defects, then spent 30 mins discussing ablation options. He also directed my GP to put me on 2x50mg/day Apixaban in preparation for the ablation.

In August 2018, I had my PVI cryoablation performed on the NHS and have been AF free since (fingers crossed). The EP had said that if the PVI ablation did not get rid of it, then I might have to go back for a follow-up RF ablation. That has not proved necessary so far and I have only had occasional ectopics, usually when I have had too much alcohol. I managed to wean myself off Flecainide and Propranolol some two months after ablation which hugely improved my ability to walk up Blackford Hill without any heavy breathing. I'll be taking Apixaban for life, alongside Ramipril and Simvastatin.

Good luck and I hope this may help you to find a solution to your own AF issue.

nikonBlue profile image
nikonBlue in reply to Melchet

Thank you for your comments. All info is always welcome. Sadly I'm not in a position to pay for any treatment so am at the mercy of the very busy NHS for now and to be honest, there's much more urgent things going on with this pandemic.I'll toddle along and knowing now that my heart scan was ok has given me a bit of confidence and a lot of relief!

Stay well

Blue :-)

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