Patients Day 2023

[BobD]

Firstly big thank to all the team for putting on a great event and Tracy in particular knowing you have a funeral this week as well.

I'm told that in due course all sessions will be available on line but I thought a quick over view of some bullet points might be appropriate.

Do have a look when they are available but above all anything involving Prof Carlos Morillo who came over as a NO 1 bloke. E g !" I live and work in Canada but actually come from Columbia where coffeee and cocaine come form. The two main causes of AF!" Or when asked how important it was if a dose of DOAC was missed " Take responsibility !"

First session was an emotional Patient story from Patrick Finn, a top international triathlete . Very moving and inspirational.

Session two dealt with the need for anticoagulation and stressed that successful ablation does not remove stroke risk. The US based experiement in PIP anticoagulation was mentioned from the floor but the speakers opined that it was not producing the results people wanted.

The next two sessions I will deal as one as they both dealt with ablation and any new horizons out there. It seems that the success rate of between 70 and 80% has not changed regardless of any new methods so it appears that the mechanism of AF has not yet been fully understood. What did come out of the discussion is that life style and taking control of ones condition was most important and patients need to take responsibility for their actions.

After lunch I was expecting to be inteviewed by Trudie (our CEO) but found I was given ten minutes to tell my AF story so if it appeared unprepared you're too right it was.

The session on exercise in AF was interesting and whilst it confirmed my often mentioned " you must be able to walk and talk" a new to me espression " Rate of percieved exertion" appeared so again listen to your body. Of course if any pain then stop.

The last session before Tracy discussed the work of AFA dealt with the use of AI and digital technology. It was lamented that NICE had only approved Kardia of the mobile devices for diaganosis but did mention that those using light (colour change) technology such as finger probes , rings and some watches etc may not be that accurate.

With my car park time about to expire Sam and I had to leave a few minutes early, hopefully not allowing the sat nav to take us down any of Birmingham's bus lanes!

I have not missed a patient's day since 2007 when AF Association was formed. It was good to meet a few old faces but most importantly to note that I always find something new. Thank you AFA for all you do.

[Finvola]

Thank you for that, Bob - it sounds like an interesting and varied conference. As you say, well done to all. I'm looking forward to viewing online.

[mjames1]

BobD: "The US based experiement in PIP anticoagulation was mentioned from the floor but the speakers opined that it was not producing the results people wanted."

----

That's very interesting because the trial on PIP anticoagulation has barely started recruiting

Jim

[BobD Volunteer in reply to mjames1]

Maybe the problem is getting volunteers? It was a slightly strange comment or maybe I didn't understand it correctly.. Either way the question was shall we say "batted away. "

[mjames1 in reply to BobD]

While the concept is not really all that new, the framing of it as "PIP Anti-coagulation" is sort of new and the trial brand new. I think they just started recruiting a couple of months ago. So that -- and the trial being across the pond -- may lead to some misinformation from doctors on your side. You could be right about the volunteers -- I don't think you would be raising your hand -- but one of the reasons for the trial, according to Dr. Passman, is that a lot of people simply won't take their daily AC's even when they should. So for these people at least, it offers them an alternative dosing with equal protection, should the trial be successful. This wasn't the same doc that said "coke and nicotine" were the major causes of afib, was it? I assume it was in jest, and have no idea about "coke", but I'm about to have my morning coffee, so I will ignore that particular comment

Jim

[Cavalierrubie in reply to mjames1]

If it transpires that taking anticoagulant as a pip is equal protection to taking it regularly, then that would change the whole regime of anticoagulants. None of us like taking them, let’s be honest, and so we would all be on the bandwagon. I would have to have very very good evidence that taking anticoagulant as a pip is full protection given the nature blood clots are formed with AF and also silent AF. Quite honestly l can’t see this ever happening and probably a waste of time and money just for the minority who refuse to take their medication and are prepared to take risks with their life.

[ozziebob in reply to Cavalierrubie]

Not "a waste of time and money" in my little AF world. I am definitely interested in the results of this approach because I am seeking an alternative to the "all or nothing" options re anticoagulation currently available. This is because I fear a catastrophic repeat of my previous unexplained chronic bilateral subdural haematomas and am hoping the risk of this happening might prove less likely with an approach that requires less days on anticoagulation. I'm not sure I can afford to so easily dismiss this PIP Trial in USA as others seem to.

[Hidden in reply to mjames1]

Interesting you say that Jim, sometime back there was a lot of lobbying going on to encourage people to consider the PiP approach to taking anticoagulants. It never made sense, who would benefit?

[mjames1 in reply to Hidden]

Bringing up newsworthy research or a trial for consideration, or even my own AC/thinner strategy under the guidance of an ep, is not lobbying. My position on this subject has always been the same. The AC decision should be a shared one between you and a trusted doctor, who knows your complete medical history. In any event, even though Bob brought up the topic first, at this point I feel that we may be hijacking his very nice thread on Patient Day, so anything more, at least on my end, will be for another day.

Jim

[Hidden in reply to mjames1]

Sorry Jim I wasn’t making an issue of anything, you referred to Dr Passmans concerns about people not taking their anticoagulants and that a long time ago some were encouraging people to do that here on the forum, that’s all!

[Cavalierrubie]

Thank you Bob for posting this very interesting and important information for us all. I have always advocated that it is up to the patient himself to take control of AF and listen to his own body, accept and adapt Thank you for mentioning the important treatment of anticoagulants as some recently seem to be in denial of the high risk of a stroke or they would prefer to take it as a pip. I feel this is a dangerous road to take. I also agree with the “walk and talk” Everything is using your common sense to me and moderation is the key. That way you can learn to live with it, and have a good quality of life and it doesn’t define who you are. I am glad it went well for you and that you and, your lovely wife , had a good, enjoyable day. Thank you for thinking of us all and all your invaluable help you always give.

[CDreamer in reply to Cavalierrubie]

Like your common sense reply!

[Rainfern]

Thanks Bob it sounds an inspiring day. Where do we find the link once it’s up online?

[BobD Volunteer in reply to Rainfern]

I expect it will be announced here by Tracy when avaliable.

[Padayn01]

Would have loved to hear more on the part a successful abalation does not mean removal of stroke risk

[BobD Volunteer in reply to Padayn01]

I have explained before that the changes to the surface within the left atriumcasued by the ablating can enable eddie currents which could allow clots to form. That is all I know.

[LadyLawson]

thanks Bob for this update.

[Ossie7]

I was there Bob , and desperate to say hello , but the opportunity never arose 🥲

[BobD Volunteer in reply to Ossie7]

Sorry we had to rush off but car park ran out at 3.31!

[Singwell]

Thanks for the report Bob. I was gutted not to make it because I'd be planning to and looking forward to meeting other members in person. Then it clashed with our first training day of our teachers' course. My thanks too to AFA and all they do, including involvement in this forum

[Speed]

Thanks for the update Bob. Sounds like it was an informative day and I’ll make a point of watching when available on line. As I’m local, I’ve been inspired to try to make it next year.

[OzJames]

Thanks Bob for the summary. I’ll check it out when it becomes available online.

[Buttercups22]

I was there too and found it hugely informative. I very much recommend to others. AF can feel very lonely and it’s good to meet others with the same condition, and to learn more about treatments, etc. Thank you so much to the organisers, the excellent medical experts and also the patient speakers - not easy for someone to stand up and recall their experiences. Thank you!

[lizzieloo2]

Thanks Bob. I look forward to seeing the report on the day online. It must be good to meet and discuss symptoms etc with other sufferers. Birmingham's a bit too far for me but grateful that the day is held and that others can manage to attend. Everyone learns something on these occasions

[SuziElley]

Thank you Bob for such a good roundup of the day. Looking forward to catching the online presentations.

[Bayli]

Thank you for your summary Bob. Any idea as to when these sessions will be available for online viewing? Thank you 😊

[Hidden in reply to Bayli]

We are aiming for 03 November! Announcements will be made shortly! 🙂

[Bayli in reply to Hidden]

Oh! Great!! Thanks so much!!

[Camelia23]

I found the patients' day informative and interesting. The lunch was delicious. It was also an escape from my domestic routine which is a bit trying at times!! Ha, ha

[BobD Volunteer]

Much better than the sandwiches at ICC!