Update: I just thought that some may be... - Atrial Fibrillati...

Atrial Fibrillation Support

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Update

dedeottie profile image
20 Replies

I just thought that some may be interested to know that at the patients day I talked to one of the E.P.s who given a talk.. It was the guy from Oxford.

I explained my situation ( unable to have another ablation due to complication during the last one--possible pierced aorta ). Without hesitation he said that he would do it again, under general anaesthetic with a probe down my throat for extra visibility and guidance.

Problem?

I live in Wales and Wales wont pay for me to go anywhere else. If I did pay for myself I would also have to pay for follow up treatment and any further touch up jobs. I am almost sorry I asked! I only moved from England 4 years ago and in general my medical "care" has been better in Wales but this is a real stumbling block for us welsh patients.

GROAN GROAN GROAN

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dedeottie profile image
dedeottie
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20 Replies
jennydog profile image
jennydog

dedeottie Oh how I sympathise and share your frustration. I live in North Wales am on week 74 since referral regarding my shoulder pain and poor mobility. I have still had no treatment. I could write a book about the failings of the Welsh NHS.

I was fortunate that I was allocated an excellent Cardiologist who referred me to the Liverpool Heart and Chest Hospital for an ablation. Prior to seeing him I had been messed about for several years. It's a lottery!

Lakey profile image
Lakey in reply tojennydog

Hi Jenny, who did you see at Liverpool Heart and Chest Hospital ?

jennydog profile image
jennydog in reply toLakey

Lakey my EP is Dr Derrick Todd. He is first class and a real gentleman. Due to an emergency my ablation was carried out by Dr Richard Snowdon. My plumbing is unconventional and I have atrial fibrosis so it was not easy but I rate Dr Snowdon as genius. He called to see me next morning before 08.00. You can't better that !

CDreamer profile image
CDreamer

Bit like when you are starving and you see the banquet all laid out in front of you but you are prevented from reaching it.

How very frustrating.

dedeottie profile image
dedeottie in reply toCDreamer

Absolutely!

Finvola profile image
Finvola

That is so frustrating dedeottie but it might be worth investigating whether it would be classified as 'not doable' in Wales and you could be sent to England where it is. Just a thought as we have the same restrictions here in Northern Ireland but exceptions have been made.

PeterWh profile image
PeterWh

I think jo meant isn't there ... and your EP wouldn't do it!!!!

That was my thought as soon as I saw your post.

dedeottie profile image
dedeottie in reply toPeterWh

I have wondered that. I have an appointment with him sometime in the next 3 months so will bring the subject up then. I dont really want him to do it as he is clearly worried about it but he may be willing to ask the board to refer me although the guidelines are only to refer if the condition is lifethreatening. Stll, it is worth a try. X

jennydog profile image
jennydog

Hidden in North Wales the Betsi Cadwalladr Trust has to refer patients to Liverpool Hospitals when they do not have the facilities/ capability to do the treatment themselves. This would also apply to neurological treatments and specialist child care.

Cost wise, I suppose the Consulant would need to justify his referral.

Rellim296 profile image
Rellim296

But supposing you got some go-ahead, dedeottie, how would it go down with a somewhat reluctant family and would you feel convinced enough to push for it?

dedeottie profile image
dedeottie in reply toRellim296

Ah now, THAT is a different story of course!! X

dedeottie profile image
dedeottie

If you live in north wales you are more fortunate as it is closer to send you to Liverpool than Cardiff and Cardiff covers such a big area. X

souljacs4 profile image
souljacs4

It is a ridiculous situation if you were visiting this country and were taken ill you would be treated where ever you were at the time. I went to get a flu Jab in boots this week as I didn't want to go to the GP to many bugs there. The pharmacist did the form we came to the part where I was asked if I took any meds I told her I took Apixaban she then told me she could not do it due to welsh government ruling something to do with it being sub venous or something like that. But she then said that she had being doing them in England for people taken Apixban its hard to believe. They ask you to go and get these things done to take the strain off GPs and then the welsh government block it (so frustrating)

dedeottie profile image
dedeottie in reply tosouljacs4

I had the same.x

can you contact the EP that is willing to do the ablation?

They know how to work the system and short circuit things, maybe they can help

dedeottie profile image
dedeottie in reply to

I could at least pay for a consultation. X

PeterWh profile image
PeterWh in reply todedeottie

Hadn't thought of that but it would certainly strengthen your hand if he said yes.

I would get a full copy of your hospital file and GP's notes.

I'm sort of in same boat, signed up to dr Ernst trial, but she's rung me saying maybe I can afford to wait a while, so I explained that I was worried I'd miss the opportunity to be treated at Brompton under her, her take was that as they needed a referral letter from my gp to go ahead, now they've had this referral letter, then I'm now as she said "her paitent", so if in two years I need treatment, I can go to her as I'm now under her..... I'm not so sure this is the case, it would be my luck that I hold off, then to be told Poppy's there was a mistake and I cannot be treated up there by her due to Wales being a different health service...

dedeottie profile image
dedeottie

Oh yes I can see your thought process there. Yours is a very different scenario but still a worry. I didnt realise you lived in Wales. However Im sure the eminent Doctor would sort it for you. I would like to think so anyway. Goodluck. X

in reply todedeottie

Thank you,

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