Good News from Australia

I have just been in contact with one of the campaigners to raise awareness in Australia, under Arrhythmia Alliance she will be travelling to all states in the next few months. She has had experience with setting up another heart organization since she has had a long history of heart conditions herself as a young person. I was in the middle of wading through all EP's in Australia, to approach for a second opinion and/or ablation, and she has provided me with a list of EP's to choose from in Sydney as there are no EP's in my area. As you can imagine the distance to travel to get to specialised treatments is more of a priority here, and I am hoping she will entertain the idea of support in my Regional Area (ie Educational resources) directed at GP's and Hospitals. Which can only produce better results rather than banging my head against a brick wall and doing my own research with limited knowledge to begin with. In the future all Australians patients and Gp's will be able to get more information relevant to Australian models of Health Care. So good news

[BobD Volunteer]

So pleased to hear you have a partner in crime during your fight for better info. You have plenty of it here of course but getting it out to the masses is always a problem even here in UK. Well done and keep up the fight.

Bob

[Hidden]

Thanks Bob This site is wonderful for patients, its the GP's and hospitals I have found, who are not up to speed, with whats' going on. They might not consider knowledgeable patients but they may consider educational resources from an organization much more readily. Partners in crime sounds intriguing never looked at it that way.

[Juls54 in reply to Hidden]

Good work ultramarine , I to am getting a 2nd opinion . Up until now I have been told that ablation for AF can't be done & the only thing available is a major surgical procedure called the Maze . I see on here that this is not the case & after doing some research I have a apt to see a EP on the 17/03 .I had what appears to have been a TIA on the 26/01 - I saw the hospital cardio on the 18/02 for review & he said he thinks it was a small clot but stIll no anticoagulant as I don't meet the CHADS2 requirement . I refuse to sit & wait for another to occur so if anything can be done I want it done ! The same attitude of wait & see caused my mum to have 4 AF caused strokes - not going to happen to me if I can help it !!!! Will let you all no what happens . Proud of you Ultramarine

[Hidden]

Good on yer ultramarine ..... way to go. But remember - in Britain on the NHS at least, GP's and Hospitals are as much a disaster with AF as you indicate they are in Oz. I was very, very fortunate as within 9 hours of initial onset I was in being sorted and diagnosed - and accurately - courtesy of my GP and East Surrey Hospital who were really on the ball. They were great value. It was the speed and skills that they had which has contributed significantly to the impact of AF on my life being so minimal. However, from posts I've read on here the same standard of care and attention/attitudes is far from uniform around Britain - very much a postcode lottery

Even here in Cornwall at my local GP's practice there is only one GP I make appointments with (the others are useless) - a woman in her early 40's who did a lot of her GP's training in Oz (Brisbane) to be exact (so she's got to be good eh ?). However, to be honest I don't know what private healthcare in Britain is like - whether treatment/diagnosis/and attitudes is any different.

Are you being treated under Medicare or have you got private healthcover in Oz. You mention distances downunder - I assume you are in NSW - can I ask whereabouts. Anyhow, ultramarine - good luck - you still have a lot of head banging ahead though but at least you have more support now - may the force be with you.

John

[Hidden in reply to Hidden]

You are better off being privaetly insured only because medicare patients have to wait until a time is available. It certainly shows those that have and those that dont have medical coverage. I have to wait until May but only because the EP broke his arm and cannot perform the ablation until it is healed. However had I have been on medicare I might not get the job done for 12 months, very unfair system and we are going more towards the USA with private cover for medical.

[Hidden]

I know what you mean in regards to EPs in NSW I too am in Regional Area and have to travel to Sydney for my ablation. PROF DAVID ROSS WESTMEAD HOSPITAL is the advised specialist that Canberra cardiologists send patients to normal doctors do not refer patients so I am guessing this is to stop unnecessary visits to an already overworked specialist. However I can honestly say I did not have any problems finding information required for PAF.

[tibetan36 in reply to Hidden]

Hi Suzie12! Professor David Ross did my Ablation last November! I cannot speak highly enough of this man. I live in Wodonga on the NSW-VIC borde., My Cardiologist highly recommended Professor Ross as the best man with the right expertise to do the ablation even though I live closer to Melbourne. .)

[Hidden in reply to tibetan36]

Thanks Tibet I too have heard only good things about Prof Ross, unfortunately I have to wait until May because he broke his arm playing tennis (must have been a mean backhand) but that gives me time to prepare myself

[Hidden]

Thanks to all, I'm on the ground floor anyway and my foots now stuck in the door. I am very lucky regards travel and financial help as I am covered under Dept of Veteran Affairs who pay for distance travel and procedures. I can go private if I want to, although the health system here is pretty good in the public hospitals. I am a war widow Aussie John (vietnam) and live in a beautiful part of Australia called Port Macquarie, its got rivers and sea whichever way you turn. I can't complain about that. At the moment am feeling Ok, with the peppermint tea and other supplements. Feeling good about what's happening, as this means younger people can get listened to and we might be able to have some important speakers lined up to give all Health professionals some much needed information. We might even be able to meet for lunch now and then, if possible. As you know there are many types of arrhythmia mine apparently is complex, both SVT and AF. I have made some enquires and got an email back from one specialist, which is great, as being in a Regional setting, you cannot discuss so easily from such a distance. I was never ever given any information soozie12 that is any diagrams or what to do next. Just had to feel my way through the maze, and do my own research, but I am glad I did, my understanding is pretty good now, thanks to everyone here.

[tibetan36]

Hi!

I am in Australia as well. Can you give me more information about the campaigner in Australia please? I have already given a twenty minute powerpoint presentation to a pharmaceutical company about what it is like to live with AF and the journey from diagnosis to present.

Kind regards

Barry

[Hidden in reply to tibetan36]

Hi tibetan36. Glad to hear from you. If you want to locate the person involved I will email her and ask for her permission to give out her name, failing this you can contact Arrhythmia Alliance Australia Admin and ask them for further information. I will contact her in a few days. I do know she is doing a lot of travelling at the moment, and is extremely busy. If you could have some patience I am sure she would be happy to know someone else who is joining the call. I will give her your pen name and she might just contact you directly, instead of through me. I will get back to you shortly, keep well.

[tibetan36 in reply to Hidden]

Thanks ultramarine! I shall await further instructions .)

[Hidden]

Hello again tibetan36 I haven't forgotten you. Still no email reply yet. I will contact you as soon as I hear anything. Keep well and keep up the presentations every little bit helps.