Here are a few of my thoughts on Patient's Day which this year was excellent. I never fail to learn something each year (apart from last year when I was selling raffle tickets and missed most of it) and this year was no exception. The presentation on heart failure in particular was most interesting and I have already been able to use some of the facts I learned from that. ( it is not what you know but who that matters). CDreamer has already given a great account which I shall not enlarge on but a couple of things struck me.
At one point a question was asked about how many people in the room were on this forum and I was staggered how few hands went up. I meet people each year who know me from here and also from AFA meetings at different venues but I really was surprised at the number of people who are apparently regular attendees yet have no involvement in the forum. I must think what can be done about that.
I also noted on the run up to the event quite a few people who were in ignorance of the event. Now I can understand that our colonial cousins and those in the Antipodes may struggle to get to Birmingham but why are not more forum members attending I asked myself. The event has been advertised on the home page here on Healthunlocked for the last year so something must be wrong. Is there a problem reading the whole page if you do not use a proper computer.? I always use my HP Office unit as I can't stand fiddling with a damned phone and everything is visible there. Next year's event is on Sunday 27th September at ICC Birmingham so please put it in your diary and make sure you book early.
The other important thing to consider is your other half (assuming you have one.) Sam has always been working until this year and never been to any of our events but this year she came in part to asist with the driving and partly because I said I would pay for her nails to be done if she came. (They looked great by the way) We had a very pleasant supper with Mumknowsbest and her daughter on the Saturday evening despite the raucous noises from the night club below the Indian restaurant and next morning I was able to intruduce Sam to many of the AFA staff and of course Matt Fay who is always good value. She loved it!
During the morning sessions she was rivetted to her chair watching the screen as the presenters gave their talk and said later how much she learned and how valuable it was to her to know these things. I think that quite often we AFers feel isolated and also reluctant to share our genuine feelings with our partners in case we scare them. Don't be. Make a date for next year and bring them along. They may enjoy it!
So we now have an enevelope marked Patients Day into which any spare £1s can go so next year we will be back at Hyatt Regency although the Pink Carnation Supper may have to be at Barhajees down the road.
What was it they used to say when we wus kids ? Be there or be square!
Bob
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Thank you Bob. Very interesting. I haven’t been before and was all set to go this year but ablation was brought forward. I would have had to stay 2 nights somewhere due to travelling by public transport and wouldn’t have got there on time. Also wasn’t coming back late into town on my own same evening. It isn’t safe.
Can’t wait to attend next year and like the idea of saving the £1 and being part of the Pink Carnation Club.
That’s sad that so few people are members of this wonderful group. I’m forever promoting it.
I came once to Birmingham as it was good to see you and others from the forum but it may be that people find they can get all the information they need from the forum so don’t feel the need for patients day. I think the way the forum has grown shows how useful it is - well done to you I think!!
Hi Rosy - second time of writing as I lost the first draft......
You are particularly fortunate in that you have an local excellent support group with medical leads who are prepared to talk on various subjects = expert patient. That rarely applies in any other area apart from Bath as far as I am aware.
Like Bob I think we need a lot more cross pollination and as good as this forum is, it cannot possibly give you the open access to experts who are so willing and enthusiastic to give up their valuable free time to come and share their latest findings.
I learned so much this year but not only that, I was so encouraged about the future and that doctors really care. Where else could you get direct access to so many various differing disciplines at one time - all involved in AF care?
Trudie, Rachel and the team did a magnificent job this year and I was particularly impressed that there was a much more healthy lunch options for lunch apart from sandwiches and cake!
Hang on a minute @ cdreamer and @ BobD !! I think you have both misunderstood me a little!! I didn’t like to mention our good fortune in the response we’ve always had from cardiologists and EPs to talk at our meetings or the fact that I’ve been able to go to various clinical meetings so can hear latest developments - it was not that I don’t think cross pollination is good- which of course it is. I do also think the forum has provided excellent advice too which may well have been sufficient for some individuals needs at that point in time.
I agree completely that Birmingham is very valuable for ideas and knowledge and may well attend next year!!
The journey would be too much for me. I would really love to go and I am sure it is just the travelling that prevents attenders from the forum going. Even getting to our local London Underground station is too much for me and then the stairs.. lots of them .. and no lift.
How I wish I could attend. It is a long way on ones's own.
Maybe car share might be an idea with passengers paying for the petrol.
Nice idea but tricky legally if that were advertised. Insurance could be compromised if money were known to change hands. Just a warning in case anybody took up the idea.
I would love to go as well but would not want to drive there myself - just the thought of it would bring on the AF! If I could drive to someone on the south side of Birmingham, perhaps I could travel to the venue with them and share costs.
It’s actually a really easy venue to get to with dual carriageway all the way in although it slightly more difficult to find parking due to the rebuilding of Birmingham city centre which is going to look very smart! Being on a Sunday in October there was no traffic and we travelled - 3 of us - from Devon there and back in a day. In previous years we have stayed over but because of the later start time of 11.00a.m. we were able to get there and back in a day, tiring though.
The low attendance of forumees is probably because of physical difficulty in getting to Birmingham. Breathlessness and lack of energy make it hard to venture far from home.
Maybe an occasional change of venue to other large cities would give different people a chance to participate.
A second thought, perhaps folk lucky enough to be still driving and with a spare seat might mention their location and offer to transport those nearby.
Comment from personal experience as I am 91 with both heart and lung conditions and have recently opted, very painfully, to give up my car. I should love to attend what seems to be a very informative event.
I can understand that. The Patient Day is normally attached to a medical conference the following week so I don’t think that is going to change. Personally I think webinars are the best way to reach people like yourself who find travel difficult.
I would loved to have come and did seriously consider it. It was the thought of the logistics getting and staying there as I don’t drive long distance anymore and my husband doesn’t as he is old, frail and severely sight impaired. I was disappointed I was unable to attend. In the past I attended FMS and Thyroid conferences and found them very informative and enjoyable.
Thanks, Bob, but ... 'be there or be square? How could you! I'm also hoping the Pink Carnation Club has nothing to do with bunions! (Although it would not surprise me in the least if there was a bunion connection with AFIB - everything else seems to like to get a look-in!)
I'm sure it is fascinating but to be completely honest if I could face the idea of going to Birmingham on my own I would rather go to the annual patchwork exhibition, and if Mr Buff and I were going to London we'd rather go to art galleries or the V&A 😊. I really like having contact with other people who have AF and who like to share problems and information and give support but I do not want AF to be my hobby, it is quite far down my list of interests but I'm well aware from reading others' posts that I'm lucky it isn't dominating my life.
I'm grateful to those who go and report back though, think you 💜
I love quilting shows - I wish I could do more - I seem to be more into renovating older quilts these days. My granddaughter demanded one last year which can a Pink Unicorn, galloping across green flower meadows with hills in the background, a rainbow on blue sky but with rain as you cannot have a rainbow without sun and rain. Go figure.........
The rainbow came out a bit wonky but rest looked ok.😂
Renovating old quilts sounds very interesting. I am leading a charity quilt project but as some of the ladies totally ignored my specs for colour, pattern etc the results are not what I had hoped!
Firstly thank you for the video of Dr Gupta. Fantastic and I am working through his other ones. I note that he does not believe that Afib (in itself) causes a stroke.
I have a podiatry clinic and may of my patients have Afib. I would like to have a leaflet or any literature to hand out to get more peolpe on this site. And perhaps a voluntary collection pot ? if you can suggest anything (to give to the association or this site).
This site has been fantastic for me and really helps. Sadly more than the GP's
Thanks Rod but I must say that I am not responsible for, Dr Gupta's videos as they are posted by Steve. As far as AF Association is concerned if you e mail Rachel (r.harris@heartrhythmalliance.org) or call the office hot line I'm sure she will send you all teh fact sheets etc you will need.
Appreciate your comments and glad it was a good day. Just looking at comments from folk who, for many different reasons were unable to attend and wondered in this technological age if the speakers/sessions etc could be video'd and YouTubed (or similar). I've really valued the many videos of Dr Sanjay Gupta, cardiology, York, and others have put up. Might make 'The Day' go a long way.
In due time. so long as copyright rules are followed many if not all the sessions will be available to download I expect. Not sure I want people seeing my bit though. I hate seeing pictures of the old git I have become. In my brain I am still 35!!!
Ha! Sounds good. - look forward to it. They have the technology to 'face-block, but why deprive the world of putting a face to such a well-known and valued name??!@
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Interesting info
