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AF Association
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Does your doctor know about AF association/HealthUnlocked?

I have had PAF for 8 years. I discovered this forum by chance 8 days ago.

1 month in hospital with staph aureus septicaemia after pacemaker insertion. One ablation, worked well for 4 years until recently.

3 cardiologists, 2 EPs, 6 GPs, having moved twice. All good chaps. Not one suggested this site. My excellent new GP has not heard of it.

AF has until recently caused me huge anxiety. Sertraline and now AF association have sorted that.

Surely doctors know about support groups like this one. Perhaps some prefer their patients not to be too well informed.

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Thnx, Badger for that.

Maybe the doctors don't understand the emotional impact that AFIB has on a person. Or they do not want to "promote" some person or group.

But I know that emotional support and management of panic and anxiety is very very! important. They just handle the physical "stuff".

Also when asked about magnesium testing, my Dr did not know about the other types of tests.

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No I don’t think they do - unless you take in material to advertise it and bombard them!

Which is what I did with my GP surgery and then asked a local and very willing EP very to come give a talk. AF is given a very low profile within the medical profession generally because it is not considered ‘sexy’, life threatening or even very interesting.

I recently pushed for a support group locally and only recently have the Medical people involved been listed on AFA.

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CDreamer

I agree that if they think it's not life threatening they do not spend much time on it.

All the other comments are very interesting.

I do not want (or wanted) a full psychological debriefing, but when you are first diagnosed with AFIB the Dr or someone should tell you that some psychological "treatment" or guidance would help a lot.

Because it is something that you feel in your chest and gets you by surprise. Especially when you are younger.

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Janco - I agree and that is why I gave the talk to the Exeter Support Group and posted the notes on here.

Since we have the Arrythmia nurses - which Bob has campaigned for over many years - things have started to improve - they run a nurse led clinic and the support group for Newbies about twice a year. Unfortunately our Arrythmia Clinic is absolutely overloaded and the waiting list to see a consultant is very long

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I was watching Holby City or Casualty or some other junk tv recently and a doctor said they were going to a lecture on AF. The other doctor replied, "Oh don't go. AF! That's so boring even the patients find it boring..."

Fiction I know, but they use medical advisors. A bit of an insight into what a medical advisor would suggest as a typically boring topic for a doctor.

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I saw that and witnessed other similar comments on similar programmers - hence it is not perceived as ‘sexy’ and as others have said - until recently thought it was a natural process of older age.

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Mmmmmm ..... must think of ways to 'sex AF up' then! Comment about what was said on Casualty/Holby City is of some concern. I did think cardiology was seen as one of the sexier branches of medicine, but perhaps that's only when it involves life-saving operations.

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My EP in Liverpol definitely knows about it. I don't think that my GP does although I did mention it when I took him a post regarding a Canadian study which indicated that Simvastatin should not be prescribed with Pradaxa. He willingly changed me to a different statin.

Realistically anyone diagnosed with AF should be given a guidance leaflet with pointers in this direction.

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AF Association enjoyed its 10th anniversary in November and many top people were at a reception at House of Commons hosted by The All Party Parliamentary Group on AF. (Even me). Prof John Camm in his address mentioned that when he was training years ago AF was considered a normal function in older people and was never treated.

We have come a long way since then and as CDreamer has done. we all need to be proactive in promoting what this wonderful charity does and provides for its members. Become a Friend of AF A and join in the various promo weeks around the year. Talk to your GP and have material sent to them. Make sure that your EP is aware. Flapjack and I have just finished a couple of fact sheets dealing with things nobody told you before and after ablation. Once they have been approved by the various bodies responsible then get copies and send them to your doctor/EP so that THEY can start to understand how we the patients feel.

Before AF Association I worked with BHF on a project and constantly lobbied for better understanding of the psychological impact that AF has on people. It is an uphill battle most certainly but many hands make light work so call to arms!

Rant over.

Bob

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I concur with everything BobD has said above.

I was also at the function Bob mentions and, interestingly, I met a cardiologist from my local hospital there so she certainly knows about the AF Assoc. and I know she and a couple of her colleagues ran a 'Know Your Pulse' event in a nearby town. However, the cardiologist I see has never mentioned it. I did ask her WHY members of the medical profession seem so ill-informed about the great work that charities such as the AF Assoc. do to support people with a wide range of conditions, and when they do know about them seem reluctant to promote them. I'm afraid I didn't get much of an answer, but lack of time seemed to be the root cause.

I have mentioned the AF Assoc. at my GP practice and even written to the Practice Manager - but answer was there none! At another practice (before I moved) I was told, "Oh, we don't have the space to store loads of literature or to display posters from medical charities" when I was trying to persuade them to 'advertise' the National Osteoporosis Society - another very helpful charity.

It seems to me that by pointing people in the direction of charities such as the AF A GPs would be relieved of much mundane question-asking and that better-informed patients can only be a good thing. Perhaps they see things differently?

On the bright side, there were a number of medical students at the function at Westminster so hopefully things will change in the longer term.

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Very important points Badger - I had, and continue to have, excellent physical care but there is nothing else that I have seen in medical centres or hospitals in N Ireland - not even a poster saying ‘Take your Pulse’.

Of course, if many people refer to ‘wee palpitations’, it shows how little of a problem it is thought to be in some quarters.

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Hi Badger. I don't have AF and unfortunately you will inundated with information here. You have to laugh really or you'd end up crying (or even dying). They say ignorance is bliss and that, unfortunately, appears to be the attitude. It just make a joke of FIRST DO NO HARM. It appears to me that there must be a lot of people suffering in silence and docs getting away with it, just because they are drs. Unless you know what you have and know which medication given has contraindications (is that a word or two?), don't be ill. HealthUnlocked is brilliant & finding it has saved my life because it empowered me (besides costing me a very worthwhile trip to an EP).

I'm writing because I received a notification asking me to, because I'm taking sertraline. I have suffered with ectopic burden forever........Now it's not plaguing me 24/7. I feel able to continue whereas I was permanently exhausted with several ectopics affecting me in different ways, in different places. Always remember to give any medication to do with anxiety/depression, time to connect to you. Do not be afraid to ask them to 'up' the increment if you are still feeling the same.

All the best Badger...ann x

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Thanks Badger, we should all emphasise to our medics that we value their opinion uppermost but 'the team' includes yourself, the AF Forum and other Practitioners e.g. Naturopath, Psych trained people etc. I have done this from the start and got raised eyebrows initially but it is accepted now. More importantly, I have found it works well.

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I have had A/fib for 15 years and its was not taken seriously until the last few years when i had ablations.

My life was a misery in those early times , it really annoyed me that it was just called palpitations when it was so much more.

i think every cardiologist should spend a week with A/fib and then they would take it seriously

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Who's this fuzzflyer spamming our forum? Can't they be squashed?

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No idea who they are, but if/when posts like this are made anyone can 'Report' them by clicking on the little drop down arrow to the right of the 'Like' button immediately below the message in question.

I have just done that for both of fuzzflyer's posts in this thread and I would imagine that other genuine people here will have done so too. By doing so I think 'Admin' can then block them.

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I have now deleted all of those comments, and messaged the person to advise them as the links were irrelevant to the conversation.

Thank you for bringing them to our attention, we act upon reports as quickly as we can, and are grateful for your vigilance.

Regards, Rachel - AF Association - Patient Services Associate

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Thanks, Rachel.

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My GP surgery doesn't appear to be interested in AF or what causes it at all. My blood pressure is far too high but they have deemed it as normal for a person of my age. The BHF disagree. I am on a mission to get taken seriously today. I have all the literature I was sent by the AFA and will show her this site whilst I am there.

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Hi Badger, I believe there are 'teachers' and 'non-teacher' doctors. As in many fields some people are anxious to share their knowledge and learn in return. Other people don't see passing knowledge on as very important. Although they are happy to answer questions they don't initiate learning/teaching conversations. Sad because many patients would love to know as much as they can but they don't know what to ask. The doctor should be the initiator. maybe they don't see teaching patients as part of their job but it is. The best solution I can think of is go to your visit with questions written down (plus your sources if possible. If a doc doesn;t seem interested in this aspect of your care, I say "move on" if possible. This also, in my opinion, applies to what I call "half answers." Example: Not long ago I asked my doc to do a Vit B12 blood test. Because I was having routine labs drawn I asked her to add this test to the others so I didn't have to make 2 trips and get stuck twice. Her answer was " If you don't really need it taking B12 won't help you. I dropped it and went another route. We not only weren't on the same page, we weren't even in the same library.

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I have just come across this post, the title caught my eye (Does your Doctor know)?

I am willing to be shot down (for the good of all) on what I am going to say.

The general acceptance or imo wish from members, (probably instigated by doctors), is that Afib does not kill. Imo this acceptance will do nothing to alter the apathy/nonchalance coming from General Practitioners as said in many posts.

So, how many of you think that they would still be here if they NEVER had their medication?

My own feeling is that I would NOT be here - without my Bisoprolol. As such that makes Afib a killer. The truth imo being - Afib can kill you! Until that is hammered home to the medical profession, then doctors will continue to be (generally blasé/medically lacking), as such a cure will be a very low priority.

Thoughts?

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Isn’t it the case that when AF is properly managed, with anticoagulants and rate limiting drugs, then AF will not shorten your life? NICE guidelines for GPS are clear and I imagine most follow them now because the local commissioners set the protocols, and ignoring them can have a serious impact on a GP’s career.

I think the rapid expansion of electrophysiological intervention is a recognition that AF and a good quality of life are not mutually exclusive.

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I take onboard your first sentence and agree with it! Having said that, do you honestly believe that you have the same lifespan as someone of a similar age, who does not have Afib?

What I am trying to do is to change the mindset of people/patients, including the medical profession who imo do not treat Afib as seriously as they should, (Remembering of course that we do not have a cure - neither do I hear of one being imminent).

General Practitioners imo seem to have fallen into believing that Afib, (of which is only going to get worse), is a "Go home to bed, take two Asprin/drink plenty of water scenario". That type of thought/belief, is not conducive to a long life of quality.

Imo, for long as we accept the "It will not kill you spiel", then it/we will continue to be at the back of the medical queue.

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Yes, I do believe that in principle, although there are issues around AC in the very elderly, where Watchman may be the answer, and medication compliance may be a problem for those living alone.

I don’t agree that GPs are generally complacent about AF, that might have been true 20 years ago. Developments over that period hold out hope that more effective and safer interventions will become the norm over the next 20. I don’t think it is realistic to think in terms of a “ cure” for any degenerative condition, gerontologists calculate that 130 years old is about our maximum potential lifespan.

And I don’t think we are at the back of the medical queue, that space is reserved for the very elderly and mental health patients.

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I would say that doctor complacency seems to vary. Only the other day we were discussing that numerous members were being bombarded with doctor surgery calls! Then as I put it, "The other side of the coin", this showed that some of us were not getting any follow up whatsoever.

The general feedback would seem to indicate that many doctors lack the required knowledge, or imo interest. I have an appointment next week at my GP (requested by myself), a 10 minute time slot is allocated! Unfortunately conveyor belt medicine is very much the norm in our neck of the woods (UK). With that type of medical attention lacking, it is not a surprise to me that GPs lack the desire to look at the problem in depth.

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