Can't get a review

[looby1660]

I've had AF for over 25 years, I'm just over 50 now and I was a rare thing when I was first diagnosed, there weren't many people my age with it and I was always seen by the 'main man' at the hospital at appointment time. Mind you, I didn't rate him that highly. So, 25 + years on, a few ups and downs and changes to medication and I've been steady on Flecainide now for at least 20 years. 200mg/d. I got on with life and mostly coped, gave into the fatigue when it occurred (although when I mentioned this to the consultant was told this wasn't a recognised symptom of AF) and when it passed got going again. Had 3 children and a husband who worked away, so you just get on. I know that others of you have mentioned it and it was a great relief to find this forum and read that you did, I knew it wasn't it my head!! I have also learned that a lot of things have changed in the treatment of AF, And that it can be treated with ablation. The only trouble is because I am steady on the Flecainide, I haven't seen a cardiologist now for about 10 years. I went to my GP to ask for a review of my treatment and to be seen and talk about if I was suitable for ablation. He said he would refer me to Cardio at the local hospital. Letter came back...er no! As she is stable, no need!! I tried to fight my corner and said but there may a more up to date treatment, my GP wrote again and was once again refused. Apparently being seen is based on need not want!

Having read some of the things written on this forum about Flecainide, I wondered if I could manage without it at all, and take it as a bolus when an episode occurs, especially after some people mentioned the time between episodes seemed to get less and less and that they seems to need more Flecainide. So the long and the short of it is, I decided to try cutting back to see what would happen, for a few days on only 100mg I was fine, the next week, ignored the oncoming fatigue as I had a busy schedule, third week, flibberty gibbert heart so back to full strength. Back to normal in 2 days. Basically my ticker cannot manage without the 200mg of Flecainde a day, I am stuck, nobody will see me, I don't even know what an EP is?! I had this most of my life and would love to not have it, I carry extra weight that I struggle to get rid of and just feel that I should not be putting this chemical in my body for the next 20/30 years!!

So after all this long diatribe (and thanks for sticking with me this far!), has anybody got any ideas what I could do or suggest a game plan for moving forward?

Thanks in advance for any advice you may be able to give,

Looby

[BobD Volunteer]

If you are in UK then you do have the right to be treated by whoever and wherever you wish. Go to AF Association website under patient information and find an EP near you and ask for referral. If all else fails, a £200 private consultation might get you into the system again. after which you can switch back to NHS. You do need to be assertive!

[looby1660 in reply to BobD]

Thanks BobD, and an EP is????? How is he different form a cardiologist? I presume from what you say that there isn't an EP in each hospital then?

[CDreamer in reply to looby1660]

EP = Electrophysiologist - a cardiologist who then is specially trained in the electrical side of arrythmias etc. Think plumbing for a general cardiologist who often do not know too much about arrrythmias or are out of date with latest thinking & treatments.

AFA site will give you info on your nearest EP and you can research their profile etc.

[looby1660 in reply to CDreamer]

Thanks for your help CDreamer.

[looby1660 in reply to BobD]

Btw, I am North Yorks so my options are a bit limited I think!!

[PeterWh in reply to looby1660]

There are quite a few in Yorkshire. You are right that only some hospitals have them. There is a group of AFers who meet in York and somewhere else. Search for York meet. I thing it may be DaveDug or similar who organises.

[looby1660 in reply to PeterWh]

Ok thanks PeterWh, will do.

[Hidden]

As a NHS patient... It is still for the GP to decide a referral.

You have the right to choose a particular team headed by a named Consultant for the first outpatient appointment, provided that the doctor referring you agrees that your choice is clinically appropriate?

[looby1660 in reply to Hidden]

Thanks For responding Sheppey but this is where I'm at now or should I say tried to be, the consultant wouldn't see me because I was stable.

[davee in reply to Hidden]

My referral came via hospital a+e. I saw a cardiologist and after several more visits to a+e and some stays on a cardiac ward I was diagnosed with PAF and referred to an EP at another hospital, where I had an ablation December and a follow up 15 March. I agree with what was said in an earlier post "keep pushing ", you'll get there.

[SuzieA]

Hello, Dr Neil Hobson is an EP in East Yorkshire and I think he sees patients from further afield too.

Good luck

[looby1660 in reply to SuzieA]

Thank you Suzie.

[Sharon1234567]

I live in East Yorkshire and Dr Neil Hobson did my ablation over a year ago with no further occurrence of AF. You can see him privately at The Spire, anlaby, East Yorkshire. Give them a ring and ask if it's possible to see him without a GP referral. He's a great EP but a long wait if NHS patient.

[looby1660 in reply to Sharon1234567]

Thanks Sharon, I'll look into Dr Hobson and see what the score is.

[Sarah57]

Hi looby

Like you my AF started fairly young(37) but I just stayed with pill in the pocket , when it kicked off, for another nearly 17 years.

Last few years have been rubbish as breaks through medication but I don't take the same drug as you, which I think can be much more effective.

This is partly due to seeing cardiologists who used to look at ECG taken on the day and it's was in good sinus rhythm and I seemed and looked well.

Luckily, I now realise, the last 2 times I have been to cardiac appointments my heart has gone crazy just lying down for the ECG so was referred to EP( I too had never heard of one until then) and in Oct he said he was happy to change drugs or do an ablation.

Although then not knowing too much about ablations, I asked to go on list straight away as it will take a while to get to my name. So pleased I did having researched and learned more about AF and options for success.

As Bob said, be more assertive and really go for finding out as much as you can.

I am lucky I live in Brighton and we have a fantastic pioneering heart dept!

Again like you, had children, work and husband working away a lot but hey we got to where we are and now is time to sort out how you want to move forward and deal with our hearts!!( lucky they are still beating strong!,)

Hope this helps a bit.

You are not alone and I have found this site so interesting and informative.

Good wishes

Sarah

[looby1660 in reply to Sarah57]

Thanks Sarah x

[Janco]

Looby

I have had AFIB since I was 23.

7 cardio versions and 1 ablation in 2003.

The ablation worked wonderfully for me, only a few AFIB episodes since 2003.

If you are interested read my blog myafibheart.com/

Keep strong, I feel that you can change your condition drastically with an ablation if you can get one done.

Janco

[looby1660 in reply to Janco]

Hi Janco, thanks for the reply, how old are you now, if you don't mind me asking?! And were you offered ablation because you weren't steady on meds (just wondering what with so many cardioversions!)?

Looby

[Janco]

I'm 45 now.

My cardiologist said that the meds I was taking back then was not keeping my heart in rhythm.

But my heart is not a "normal" heart because I was born with Tetralogy of Fallot (TOF), had surgery and enlarged right atrium.