Some of you may know that I joined this organization for over a year now, and have been involved with some of the posts and questions on this forum, and I hope contributed in a positive way.
Administrators for this fundraising and awareness week seem to have left a lot of vital information off the site. It suggests a National approach, yet no map or other information gives me the impression that this could benefit others in Australia, it seems to provide more information for those in the UK, if you want a National approach then this (in my view) should be emphasized more. In the meantime maybe some of you could enlighten me on how to address this issue, with contacts etc.
Hi Ultramarine, I think Healthunlocked is based in the UK and therefore would reflect activities in the UK. I also live in Oz and perhaps the national Heart Foundation or atrialfibrillation-au.org/ may be able to help. National is usually just the country the organisation is based in. Hope that can help
I think it's UK-based but that the people who join in the Forum are from all over the world and providing support to each other wherever we may be. But I can understand that events may be local. However I am sure it would be a good idea to organise something for Heart Rhythm Week in Australia. Perhaps the Heart Foundation has something on? It would be worth contacting them to find out... Hoping we can help everyone, everywhere, somehow
G'day ultramarine,
I'm now going to put on my floppy hat and pretend I'm back in Oz and pretend I'm looking for info on heart rhythm week. I went into the following which took me to the arrythmia alliance website which I think is the organisation promoting Heart Rhythm Week down under 2 to 8 June.
I must say I find these different organisations all very confusing (not forgetting a duplication of resources) and I'm afraid I simply don't have time at the moment to start analysing who, what and why different organisations exist and function. Anyway give it a go and see if this produces the result you are looking for. AA does seem to list an (02) phone number but couldn't see an Oz address, obviously there seems to be a Sydney point of contact. This website also lists 3 other affiliate organisations; afa, international stars, and hearts4heart.
To be honest, I rather suspect that all info on these sitesmay well originate/reflect UK or USA, as you say, and thats not any good if you live in Cobar or Port Augusta or Lorne. And of course none appear to provide Aussie based thinking in the treatment of AF. Not sure they even provide details on Aussie AF Support Groups as we have emerging in UK.
Not sure I'm expressing myself very well, and I might not have researched it very thoroughly either- apologies in advance for that, but, hope this post helps - still recovering from some Mcquigans Black Label Shiraz last night
If I can help more let me know.
May the force be with you.
Aussie John
in reply to
Dear Aussie John, thankyou what a relief to find something, I will take these as a starting point. Australia has a long way to go, which I was fully aware of when I was first diagnosed, even the National Heart Foundation in Australia couldn't give me a contact person, but they did say that they knew there was a black hole in relation to this? it was similar to Bob's situation when he first started this in the UK - no information anywhere, even the local heart group either could not or did not want to start anything when I approached them, we're a weird mob alright. The Arrhythmia Alliance Group is mainly in Queensland, and doesn't seem to have moved forward that much, but I will contact them before the week starts.
You always express yourself well Aussie John and have a great imagination or is this the Black Label talking. Thanks again for your research and information. PS Its 25 degrees celsius in Sydney at the moment.
in reply to
Ultramarine stop winding me up about the temperature in Sydney .... you'll bring on an AF event !!!
I meant to have said a bit about Support Groups ..... these seem to be a fairly new feature here of patients doing something for themselves with support from local health services and AFA. Before I moved to Cornwall I was in Surrey and a support group was started in Brighton. I was in the first batch of attendees, there were 6 of us. Within months this 6 had become 18 ! All with AF, all seeking help, support, all seeking to understand ... why me. What really hit me was not so much the number of sufferers over 55, but the number of young ones, and in particular a young mother, I guess late 20's early 30's. Reminded me of my daughter (aged 32) in Melbourne who is a young mother and has AF.
The Brighton group organiser, a lady with AF - in conjunction with the local Hospital Arrythmia Nurse set it all up. From time to time there were talks by anybody from Cardiologists through to alternative medicine practioners, some times even just discussions amongst ourselves about our experiences. Sort of takes over from where the online forum ends. In addition there was always plenty of material from AFA to hand out to people.
Where I am in Cornwall there are no support groups, in fact, our nearest as far as I know is at Torbay, some 2 hours drive away.
Enjoy your weather - I'm on my 3rd BBQ so far - but weather too cold to eat out !
Aussie John
National pertinent to country org based in international embraces many countries. Sure Oz must have national org too plus info is same in the main wherever we are
Thanks again Aussie John, and to all those that have replied to me. I did join the local heart Group here in Port Macquarie. A regional setting with no support groups set up and no Arrhythmia Nurse or additional hand-outs in both the General and Private Hospital. I got the distinct impression this condition was not a priority although I pushed for this with the Committee Members. The main reason from what I could gather was colored by the fact that the young also had this condition, and the group were not set-up for this. There were no other women on the committee and I don't think this fund raising and awareness group had time to pursue this. If the Hospitals and Doctors do not have the information for basic care to give to any patient then you are battling on another front. It would be an ideal place for a group to be started, but you need the local hospitals and Cardiologists to give their support too, and more information to be placed with existing committees. This comes back to any Administrator who can handle the paperwork concerned to get to the people who have this condition along with the Hospital and Cardiologists, at the moment Aussie John there was not one handout given to me which is why I am trying to find out how much of this information is sent to Hospitals and GP's in Australia, and wondering how many stories from others get to Australia.
It seems that your part of the UK is not fully supported either maybe you could start one there!
I was impressed with my visit to Cornwall in the past, it's a beautiful part of the UK just as is Port Macquarie, but we do have the weather to go with it and the most glorious sunsets. It will be winter in about a weeks time and still around 25 degrees - I didn't know you had BBQ's in Cornwall. There are BBQ's along most of the beach fronts here and the huge Whale migration is coming through to get to Qld at the moment. Just another wind-up Cheers
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