Patients Day 2013

OK that has now been and gone and those who couldn't make it missed a lot of fun. Although there were some gaps in the organisation and a Half Marathon on the same day from the same venue really did NOT help with many people arriving late I am sure that those who came got a lot out of if. With one glaring exception the presentations were pitched at the right level and easily understandable although there is always a tendency for patients to ask specific questions about their own cases rather than ask for clarification about any points in the talk. Doctors presenting obviously can not comment on individual treatments as they have no case notes so please don't embarrass them by asking. The lack of a roving microphone for question was annoying to some people who could not hear the questions.

The round table discussions in the afternoon proved popular I think and believe the two I chaired went well with everybody having a chance to have their say about managing lifestyle changes due to AF. I can't speak about the other groups. Some subtle adjustment to the late afternoon time table ensured that we ended on time and most people had gone within half and hour with the marathon thankfully finished although road closures meant some interesting sat nav following getting away.

Thanks to the Pink Carnation Club for such an enjoyable evening on the Saturday and maybe we can entice a few more next year.

Oh and the glaring failure. The young lady from NHS England who must surely be a relative of Sir Humphrey Applebey and delivered an unintelligible talk about something which totally failed to live up to the title of what we might expect from the new NHS. What a lost opportunity!

BobD

47 Replies

oldestnewest
  • Sounds as if you had a great weekend - disappointed I couldn't make it.

    Looking forward to reading more about the day and all the info.

    Marion

  • Yes a very enjoyable evening and day, only slightly spoiled by the 45mins it took to get out of Birmingham city centre, and then the M40 being akin to the world's largest car park, resulting in a 3.5 hour drive home for a journey I have done in not much over 90 mins in the past.

    But I agree the Saturday evening was great, good company and very interesting conversation, thanks for organising it Bob. The presentations on Sunday were excellent and informative, it's very hard to balance those for an audience which ranges from the newly diagnosed who need a lot of information and the "old guard" who have been there seen it and done it, and I thought they did that very well.

    Poor old "Miss Humphrey Appleby" must have thought she was presenting to a cadre of senior civil servants, and even then I think most of it would have been unintelligible, still she was eager and pleasant even if the whole presentation missed the point.

    Great to meet so many people from the forum, and thank you to the unknown supporter who stood up and disagreed with the specialist nurse who was a little dismissive of the online forums as giving potentially unhelpful advice...

    This forum, unlike the Yahoo one, is not fully moderated, for those who don't know on the Yahoo forum all posts are read and checked prior to being posted, and if anyone comes up with something which could be misinterpreted, then the moderator will still put the post live, but include a comment usually from the moderator clarifying or even disagreeing occasionally.

    Here the posts go live as soon as you post them, and we are not live moderated, I mean if it's outrageous or advertising or otherwise completely against guidelines, someone will report it and the post is usually pulled, but generally it's left to people to simply comment and we all get hold of the wrong end of the stick sometimes (especially me), and then someone will correct us, and for me it's a better forum for that.

    Great evening and day, had a thoroughly good time, met some great people, learnt some new things, and had some thoughts confirmed, and where else can you get a lunchtime conversation with a specialist physiologist, and then during the coffee break talk to an renowned EP? Oh and it was great to meet the AFA staff as well great bunch friendly, helpful and really committed to us all.

    Ian

  • Coffee break? Yeah OK break but the coffee never appeared! Or did I miss it?

  • no somebody forgot to order it. Whoops!

  • I went and had a great day. I didn't wear a pink carnation, but I did meet Beancounter and what a nice bloke he is. I felt very sorry for the young girl who had the most difficult talk to do. I met her outside before the talk, and she was a stand in. She was busy preparing notes when I met to her. She did use very jargonistic talk that was hard to follow, and didn't provide a simple summary for us not in the industry which would have been good. But basically all she was explaining was that they are doing some quite big changes in the NHS that will be of benefit to us all, due to better utilisation of resources and making things more even across England. Noticeably, it was just NHS England. Funnily enough, the doctors I spoke to thought her talk was very good!

    I have made notes of the key points that I picked up, which were really fundamental (such as ablations usually being a MILES better option than drugs), and wondered if it would be a good idea if we had a topic with these headline points that each person derived from the conference, without going into detail. And bearing in mind that nothing in them should be taken as prescriptive because the big thing we learned yesterday was that everything with AF is quite individual and there's huge variations in how to best deal with it.

    What do you think?

    Great day, thanks very much to all and anyone involved in the organisation. And I will wear a carnation next year.

  • Hi all - this is the first time I have posted on HealthUnlocked, so I hope it is successful! I was really sorry to have missed tis year's Patients Day at HRC so my apologises to everyone. However, from requests (including from me!), I know AF Association would welcome receiving summaries of the presentations. We always seek permission to add the slides to the website after the event, and try to add a summary, but as anyone who has been will appreciate, it is a busy day and making a written recording of the presentations is very hard for the team. If you do have summaries you would be happy to share and think may be of great interest to others who were unable to attend, please send them in (email jo@afa.org.uk or raj@afa.org.uk). Very best wishes Jo (Jerrome)

  • Hi Bob,

    What a great week-end and a delight to meet up with "old/new" friends...

    It was certainly very informative ...Just looking notes I took.

    Catheter ablation improves quality of life...

    A.F associated with dementia and stroke..

    Catheter ablation far superior to drugs...

    Ablation slows the progression to persistent AF

    Symptoms of Af should be reviewed once or twice a year.

    Palpations should be followed up...

    Breathlessness..

    Ankle swelling.

    Prescriptions constancy should be reviewed

    Risks- cardiovascular

    Risk of stroke growing with age...

    Risks of strokes in women enhanced by hormones...

    These are just a sample of my notes.

    Genetics...medicines,diet and Alcohol..

    Predisposition to AF

    Andrew Graces lecture brought a laugh.

    "Any history of physical exercise in your family"

    .

    Dr.Matt Faye rel-iterating what you always say Bob

    .

    ..

    "THE BEST TOOL IS TO BE EDUCATED ABOUT AF"

    P.S Pink carnation looking rather wilted NOW.....And more.a shade of grey....!!!!.C

  • Sh People will talk.

    B

  • Just one shade of grey? Probably all right then....

    Ian

  • " Andrew Graces lecture brought a laugh.

    "Any history of physical exercise in your family". "

    Is someone arguing that AF is epigenetic?

  • Glad that you all had a good weekend and sorry to have missed it. If any other snippets of this meeting pop into your head, please let us know. Bob you met my Richard last week, he gave a talk to your group. Jean

  • Yes I know, I have been worried about you. I do hope you will both be fit to come to the lunch at The DIggers Rest Woodbury Salterton when I organise it.Probably sometime late November

  • Sounds like an interesting day. I'm particularly interested in the fact that catheter ablations are 'miles' better than drugs. Were any statistics given for the success rate of ablations? Having had a bad experience last year with a cardioversion, I've been reluctant to embark on any further intervention. But perhaps I should think again.

  • This is actually a complex case to argue as there is still little LONG term ie over five years data but from what I remember the chance of being AF free at 36 months is probably about 20%+ better post ablation than on drugs with a best case scenario of 80% success. Remember that this may involve more than one ablation. As I'm sure you know, I am a great fan of ablation and do feel that the current risk averse society plus doctors having to give you worst case scenarios to avoid possible law suits is putting many people off. I'm sure that the talks will be downloaded to the main website eventually. .

  • I too am impressed that ablation is considered to be better than drugs. I have just agreed to go to Broadgreen, Liverpool, to be assessed for ablation. I have been encouraged by Beth's experience and by learning, from this site, that it gets worse with age. It seems only sensible to give it a try.

  • It was great to meet fellow AFibbers on Sunday. Sorry our conversation was so short Caromia! I found the talks exceptionally well-aimed and informative "with one glaring exception". Being a leftie, I couldn't help thinking that the money spent on bureaucratising common-sense approaches by the NHS could have been better spent on increasing front-line hospital staff!!

    It was a revelation that catheter ablation could be considered as a first-option procedure as I had always thought it was to be used when nothing else works. It's still a hefty decision though!

    I would recommend anyone who was thinking about attending this event to give it a go. My carnation fell off before morning break, but I'm glad that others had sturdier blooms!

  • Wish I could have gone! Thanks for the information, I'm hoping for more though I appreciate the only way to really get the best out of something like that is to go. It would have been really good to meet people too. I'm interested that ablation is seen as a much better option - my cousin had a couple of bad experiences with attempted ablations that gave me pause for thought, but maybe it's the way forward...

  • Right or wrong, here are my notes that I have now typed out.

    1) The younger the better for ablations, but some still done even on people in their late 80's

    2) Ablation much better than drugs by quite a big margin, and should be considered part of on-going care, rather than a one-off op not to be repeated (although it could be a one-off).

    3) AF has been statistically linked to many issues/problems, not just strokes, including alzheimers, dementia, can't remember the others!

    4) Have an ablation asap, don't leave to get worse, harder to treat later on (Note, this is not what my EP said a few years ago. I had continuous AF and he said it was easier to treat because he would know immediately whether the op had worked or not, and it did work 100%, but coming back now, as he predicted)

    5) PAF will progress and get worse if not dealt with, deal with it asap if possible

    6) Aim for range 2-4, not 2-3. Main Warfarin man said he would aim for 3

    7) You can self-test your INR, and most of you no doubt know that already, but I didn't, and Dr Matt Fay recommended it as a better option. You could then aim for a higher INR of 3 instead of 2.5.

    8) The GP gave the impression that the new alternatives to Warfarin were better because they were as good as Warfarin but carried less risk of cerebral hemeorage, although one of them he personally avoided because of side-effects (Didn't write down which one but it began with "D", sorry!)

    9) Sports heart rate monitors do not work properly when you have AF and the EP explained why this is, something to do with the varying pressure of each beat. He said if you want to see what your heart is doing, best thing was to listen to it, i.e. use a stethoscope which you can use on yourself he said.

    10) He was also was negative about home ECG monitors, including the new AliveCore, but I can't remember what he said!

    11) Alcohol in moderation is fine in moderation if you feel OK with it, but never binge drink

    12) The EP heading the exercise and AF table, said that he split AF patients into two broad categories. Those that get AF when they go to bed, and those that get it when they exercise. (Note: I get both!). He said that those that get AF when they go to bed, beta-blockers like Bisoprolol are in his opinion the wrong drug. Instead of trying to slow the heart, what is likely to be required is to speed it up, and he mentioned the new drug that he prescribes to his patients in that category (but I didn't take the name). He said GP's would be shocked by this because I think he was saying they routinely prescribe Bisoprolol etc.

    13) Check your motor and travel ins policies to check that you're covered and OK to drive.

    That's what I heard, which doesn't mean it's correct!! Please tell me if you think there's anything misunderstood.

    One big improvement they could have made is print handouts of the slide-shows.

  • Yes that pretty much covers it. I had to correct the nurse who told us we didn't need to tell DVLA as this is the advice to doctors not drivers who DO have to. I was using this info wrongly myself for some years until corrected by another member.

    Interestingly I have always been anti most home testing machines as they tend to create OCD amongst their users.but was given an Alicecor device which I tried.and also took to show my GP. On both her and myself it shows no p wave which on a 12 lead would indicate AF of some sort yet a 12 lead done at the same time showed NSR.. I could be wrong but feel that as a way of checking heart rate it is,probably OK but doesn't have the finesse of a proper ECG.It is also incredibly sensitive to any movement or noise.

    BobD

  • Bob, just to clarify, are you saying that if you have AF you must tell DVLA regardless?

  • If you have a look at the DVLA website, arrhythmia is on the list of conditions that you MUST declare. If you act on information that you haven't got in writing you won't have a leg to stand on if you get challenged.

  • Yes look at the DVLA website under drivers medical conditions. Form H1 needs to be completed if you have AF

  • Hi Bob, I had an ablation for PAF in 2008 which has stopped me having episodes until now ( fingers crossed I am not tempting fate!). Do I have to inform DVLA , my consultant Dr Tim Cripps didn't seem to think so.

    Any clarification gratefully received.

    Jay10

  • Hi Jay. you are like me, no AF since successful ablation Since we don't have AF we don;t need to tell DVLA but we should have done before, only didn't through ignorance.

    Bob.

  • Thanks Bob for your reply. I was also unaware that I should have done so. Oops!!!

  • Koli, thank you for going to so much trouble to let us see your notes. It is much appreciated.

  • Thank you from me also. Kindest regards to you all. Phyl.

  • " Sports heart rate monitors do not work properly when you have AF and the EP explained why this is, something to do with the varying pressure of each beat. "

    Can you be more specific? The amplitude of successive beats vary on my pulse during AF, but I've found that my HRM has always agreed with the ECGs. I've found that they'll also deny that their own EGCs are reliable when it suits them.

  • I can't explain it ectopic, I'm just repeating (or trying to!) what the EP said. Whatever he actually said, the definite thing that he did say was that in his opinion you should be wary of the readings from a sports-type monitor, if you are having AF.

    If it's any use, I have 2 which I wear at the same time. One a Pulsar chest-strap monitor, and one a wrist-only ALPHA-MIO. Most of the time they give the same reading. But occasionally (I THINK when I have an AF episode), the Pulsar soars to 200+. I feel fine and the other monitor just goes up to a much lower, and much more believable figure. Then in an instant, the Pulsar will drop down to say 130 BPM or less. I think others have found the same.

    But I guess that it is affected by how your individual AF actually behalves. Maybe it could be that mine has more variation in the strength of the beats, or the interval, pass, way out of my depth, just know mine doesn't work on me.

  • Hi Koll -- very interesting to read your notes . I really must try to come to next years conference. Particularly interested in the ref. to INR -- is there any real intention to raise the range to 2 - 4 ?

    Also was there any mention of a maximum no. of Ablations that could be performed on any patient or does anyone know if there is ?

    Sandra

  • I think I should expand on the INR question. What was said is basically that INR is a very inaccurate measurement.. No two labs or no two machines will ever come up with the same result and you can't compare machine test to lab tests. Time from blood draw, temperature and many other things will change the rate at which the blood clots and thus the INR. (I won;t try to explain all the chemistry) . A patient asked about aiming for a slightly higher result to be sure that one was in range and the presenter agreed that this would be a good idea. There is no intention to change the "range" but if you self test you might want to aim for above 2.5 to be sure.

    I have had three ablations and know of people who have had more. I think the limiting factor is finding access through the femoral viens as scar tissue builds up.

    Bob

  • Hi Yatsura,

    What the GP said to us was that the range used to be 2-4 and it was changed to 2-3. He said the reasons for the change were invalid in his opinion. His words, not mine but not verbatim. Overall that agreed with everything else I heard on the day.

    Haven't got a clue about the number of ablations you can have. Someone, somewhere on this forum just said they've had 7, unless I'm dreaming! But I'd guess everyone's different so there'd probably be no simple answer.

  • Sorry Bob if I'm jumping in

    Koll - Yes you must tell them - I didn't realise until a month ago - phoned them up and they sent me a form to complete- returned it to them and got a reply back within 2 weeks saying ok to continue driving. (I think you can download the form and just send it to them)

    Marion

  • Thank you Marion/Bob, and I will do this.

    PS Here's the link to the form gov.uk/government/uploads/s...

  • Thank you for the link to the DVLA form, I have printed off same and will comply with advise given.

  • That's what the DVLA website says. Then you download the form which asks if you've been advised by your doctor or specialist to notify DVLA of your condition. Only if you answer Yes do they want to know what your condition is. So you need to send a covering letter. Seems unnecessary bureaucracy to me. There's a separate thread on it on this forum.

  • Sorry, totally confused. I have not been advised by anyone that I need to tell DVLA or that I shouldn't drive, and they all know I'm a farmer, so do I need to fill in that form and send it off? Answering "No", which is what I will be doing, makes the form useless as far as I can see !!!! Except to employee people!

  • There is a £1000 fine threatened if you do not advise them. Also you must tell your insurance company. the reason for this is that as AF IS A NOTIFIABLE CONDITION and as such your insurance company could avoid any claim if you have not told them. I know of nobody who has been refused cover or had increased premium. It is all about self protection. Have an accident which isn't your fault and you could end up in deep doo doo if you don't tick all the boxes.

    B

  • Koll

    When I phoned they said I must notify them.

    I agree that the form is confusing.

    I answered "NO" to Q. 1 and wrote in AF (In full) then continued to answer all the other questions. No covering letter required.

    Marion

    .

  • Thanks Marion, I will be sending in a covering letter, if only to tell them to revise their form.

    Back to the Patients' Day.

    Thanks for all the reports. I self-test for INR. In the early days it was every few days but now I test every 2-3 weeks, and let the Warfarin nurse know when she phones me up every 6 weeks or so. Although I didn't have to go far to the Medical Centre for testing there it's handy, if you can afford it, to have your own testing machine for peace of mind, for example when recently I had a bleed which took some time stopping. i tested myself and found it was only at 2.0

  • The professor who talked about INR was fascinating, and he said it's such a difficult test that it's a wonder that anyone gets it right. And if they do put his talk on the website do see it, he was great.

    But his conclusion was, the INR of ANY source is only accurate to about +/- 0.5 and above 6 or 7 it's almost useless.

    So If you have to err, err on the side of 2.5 to 3, and not 2 to 2.5 was his main message and don't even start worrying until your INR is consistently over 4.5 or so.

    Ian

  • Hello - an AF Association team member here! We will do our best to add all presentations to the website and then highlight in the e-bulletin to all members and of course on the Forums. Any delay is due to needing to seek permission from each presenter that they will allow the slides to be added, and unfortunately we don't receive the slides until the morning of the meeting so are unable to print or circulate any earlier. I for one am looking forward to seeing these, having sadly missed the day - as Bob D and Chris will explain, earlier this year there was an interesting conversation about INRs where we all began to learn how variable it could be! An eye opener, and hence why we then worked to have this shared at Patients Day... would everyone who saw it think it would be helpful to ask Prof David Fitzmaurice - a GP (the presenter) if he would write a summary for the newsletter and website?

  • absolutely Jo. Particularly about "stuff" lol.

  • JoJerrome, I would like to see a summary because I found his talk fascinating and helpful, as were the other presentations.

  • Thanks to everyone for posting so much information from the meeting, wish I had gone.

    I have an unusual vein formation around my heart (P.L.S.V.C.) persistent left superior vena cava and would like to have asked about how difficult it would be to perform an ablation on my heart.

    Anyone with a similar abnormality?

    Ian

  • Re INR- one two occasions the hospital result for me has been 0.2 below the home testing equipment- and the lab is said to be more accurate. It may be the factors mentioned by Bob, but if not, it may explain why the doctor at conference thought a little higher was a little safer??

  • Absolutely. Got it in one.

    BobD

You may also like...