I have been asked to talk at a"Collaborative Learning Event" event next week( organised by the Kent, Surrey and Sussex Academic Health Science Network) where the audience will be mainly GPs and other HCPs.
I am giving patients' views on AF treatment, diagnosis, and what our support group tries to do.
If there is any part of your experience that you think would be good to pass on to this audience- things that would help them to understand how patients feel and what has been good/ could be improved, would you kindly answer this post(or PM) with details.
I will be at Ian's Natter and Nosh on Saturday if it's easier to pass on details then
Many thanks
Rosemary
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rosyG
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1. Dont be dismissive of the patients observations. 2. Anxiety is a very natural consequence and not to mistake it as the primary condition. 3. An EP is specialist in AF and best placed to treat rather than a last resort.
My diagnosis would have been faster if my PAF had been caught on repeated ECG's done by my GP over a six year period. My complaint to my GP was always the same - I can't breathe properly occasionally.
Perhaps advice to such a patient to take their own pulse or come to clinic during an episode would be helpful.
GP surgeries with a medic who has special interest in cardiac issues would be really useful like Matt Fry in Leeds area I think it is would save surgeries many visits until people are finally diagnosed.
thank you to everyone for such a quick response- I will incorporate all suggestions into my presentation- if anyone else wants to add ideas please do- I will finalise on Sunday (18th) so plenty of time for ideas thank you
That GPs would realise just how debilitating AF can be and stop treating it as if its just a mere nuisance as our quality of life can be seriously affected
AF can be triggered/exacerbated by other conditions such as poorly controlled asthma, reflux/hiatus hernia, viruses and infections, sleep apnoea. It is advisable to check for general health problems when a patient presents with AF. Thinking back I can usually link episodes of AF with another health issue which 'tipped me over the edge'.
It would also be helpful to the patient and the NHS if the GP provided a leaflet with instructions on when to seek medical help during an episode of AF. I think GPs don't get that patients act on how bad they feel rather than on the clinical signs which doctors use so patients need to be educated on which symptoms are important. This applies particularly to older people who don't have the internet and are often more stoic!
Access to a specialist nurse would be very helpful and a referral to that specialist following diagnosis in order to discuss the condition and possible affects of medication.
I've never been to an AF clinic and did not know they or arrhythmia nurses existed until one day when loitering at the hospital got talking to someone who said she was an arrhythmia nurse.
The problem can be how to get to A&E if you dial 999 as I once did. My heart was racing and uneven and my BP was sky high. She asked lots of unconnected questions and I said that I had told her everything and that I had been at A&E the night before and had a diagnosis of AF. She asked if I could not get there on my own. I told her that I don’t drive and it would be a long walk to the bus stop and as it was 6am too early get a bus and hung up on her. She bravely phoned back and I again soon hung up. A for effort she phoned again and said if I take a taxi to be sure to take a phone with me in case I felt worse and needed to call an ambulance
I resent my GP's staff referring to my Atrial Fibrillation as PALPITATIONS. I have never been aware of palpitations and I think that's it's a very demeaning description of a horrid condition.
I was told it is a medical term meaning 'awareness of the heartbeat' and covers all arrhythmias as well as a thumping heart, whereas we take it as suggesting we are Victorian girls! Another case where doctors and patients are on different wavelengths.
jennydog Ha!.....how I agree with that. I can recall being in AE with s full blown AF episode and a medic saying ' I understand you're having a few palpitations '.
They need to be aware of just how frightening some patients find AF . Some of us can be quite stoic and relaxed during an episode , for others it is a terrifying ordeal that in their mind can only have one outcome ! Help with understanding the condition , access to support when needed . The attitude ...you have AF , it won't kill you , live with it , is not helpful . More Medics need to understand , it really can feel as if one is going to die ! Good luck with your talk xx
Listen to you patient, it is their body and their illness. If they have another condition and initially you think it is just that out of control I.e asthma and you have tried various other treatments, but they appear not to have worked, consider the breathlessness may be due to something else. Take their pulse . Also please refer to an E P.
If someone presents with palpitations don't dismiss as stress or anxiety. Do an ECG take the pulse. Take note of irregular BP readings if high on one reading don't just diagnose hypertension prescribing drugs that may cause further problems. I E may drop a low BP when not in AF .
Advice to lady patients. Don't dress up , do your hair and wear make-up when you go to the doctors. Some research a few years ago showed that women were less likely to be taken seriously if they didn't LOOK ill.
Remind your audience that we may not be trained in AF matters. We may not be "experts" but don't dismiss our views ....we are expert patients!!! But if there is one word that could sum it all up.......LISTEN TO WHAT WE HAVE TO SAY!!!! Well that's 5 words but you know what I mean lol
Invite spouse/close family members to explain what the diagnosis is and means. As we mostly look well even family have difficulty understanding and we so need their support.
Understand that the diagnosis and discussions can change a persons way of life and that has associated psychological consequences. Coming to terms with not doing the things we were able to do, sometiems, a short time ago... In my case "healthy triathelete" racing regulalrly to restarting building fitness. There is a loss!!
1. AF can be hard to determine in someone who has a history of cardiovascular exercise.
2. For some people AF is debilitating but for others it isn't noticeable.
3. Whilst medical text books quote a 30% decrease in power output for AF during exercise, seasoned cardiovascular exercisers might only experience a 10% drop.
4. There seems to be confusion between arrhythmia and AF.
5. If you have AF, but exercise, eat the right things etc, it won't protect you from a stroke if you don't take an anticoagulant (I'm speaking from experience).
6. For people like me who are a bleed risk, I'd rather take the risk and take an anticoagulant. I'm still a bleed risk but now have to take an anticoagulant after a stroke last year.
I know GPs are busy, but take a minute to look at the evidence the patient presents. If an ECG is normal but the patient says they have periods of a racing heart AND their BP monitor shows an irregular heart beat (mine has an indicator), don't just assume stress!
Also, please don't just diagnose and abandon. Agree a plan as to what to do when PAF gets worse. When to go to A&E, etc. Realise that a new diagnosis leaves you feeling frightened and vulnerable.
Very important have time to actually listen to the patient
Many doctors have dismissed gut and afib link yet too many people have made the link themselves for it not to be there a great cardiologist we all know is Dr sanja from york he is amazing
and should be an inspiration to all doctors out there
I am a health care worker as well as having afib
I know especially in the NHS time is a big factor
People need to be listened to and respected and made to feel important a d that they are not alone
Last time I went to my GP his watch bleeped. I asked what it was and he said it was an Apple watch linked to his iPad. I wondered if it meant my ten minutes was up . I'll be listening for it next time.
This has happened to me too. January in my gp's. An alarm clock went off:my 10 mins were up. I'd waited over 2 weeks for my appointment. I give up. People with af are just a nuisance.
I read on another site that American doctors are now limiting patients to twenty minutes.
Our GP's web site mentions that if needed we can have twenty minute appointment. When I phoned and asked the receptionist she said that only the doctor can allocate you one and that you would need to have an appointment and ask for the next one to be double length !
If I ask at the desk for a copy of a print out of test results etc. they want £5 for it . But if I ask for a copy sat an appointment he just prints it off.
Hi life would have been much easier if my PAF had been caught on an ECG sooner it took 5 years. I had an ablation 3 weeks ago I now have no contact with the EP and hospital until a 6 months follow up. I have no confidence in the GP surgery if I have any concerns or worries during this 6 months.
That and hypertension seem not to be high on their priority lists. One once said to me that if they treated everyone with hypertension they would never have time for other patients, Another said if we referred every patient with hypertension to a specialist clinic there would be a queue from heer to the hospital.
I would have had tumour in heart found sooner if not sent away with stress and BP meds. Took from 2009-2014 to get through the process. GP still didn't diagnose pre op for gynae found AF
My GP was very sympathetic about my PAF symptoms (palpitations, fast HR and near fainting) and clearly suspected AF but was unwilling to make firm diagnosis without evidence.
My own research led me to Alivecor/Kardia, the evidence he needed, referral to a cardiologist and treatment plan. As a result I have far fewer episodes and feel much better than I did in the 12 months of uncertainty beforehand.
Suggestions to go to A&E or call an ambulance when having an episode seemed inappropriate to me. These are, after all, emergency services.
Greater awareness and availability among GP surgeries of Kardia or similar monitors would make diagnosis of PAF much easier and considerably reduce uncertainty and attendant anxiety.
I hate going to A&E as I know that if I sit it out it will pass without them doing anything. The one time they kept me overnight it was probably worth while as it resulted in my getting a seven day monitor that led to my pacemaker.
If I call my GP surgery they will say to go to A&E and 111 will send and ambulance as soon as you say chest pain of any kind.
+1 for the Kardia. I expect that many GPs have never heard of it, or have knowledge of what it does. At the price, each practice could have one to demonstrate to patients, shared between the GPs. Maybe even pick up some asymptomatic staff members that way!
As someone who lives in the geographical area concerned:
I had very good follow up care after heart surgery, which involved attending several sessions to improve cardiac fitness. Obviously not every patient had AF - we were a mix of people who had undergone heart surgery and others who were recovering from heart attacks. However, this would have been a very good opportunity to include education about AF for this group.
Perhaps some routine information for the population at large (not all of whom are patients) should be considered, in the same way that information about smoking, diet and diabetes is given out, for example.
I went to cardiac rehab after having my aortic valve replaced. The exercises were far to easy for me and I felt it a waste of time. The others there were mainly a lazy lot of car users who had never walked anywhere in their lives and had mostly had stents fitted..
The hour talk-in after it never mentioned AF. It was basically a blame game telling us despite my protests that it was all because of our lifestyles.
That's very judgemental. I had an aortic valve replacement but it was a congenital defect that I managed to cope with for 58 years. Nothing to do with lifestyle. I am not overweight, have never smoked and could swim 500 metres 3 times a week until not long before my operation. The people I met at cardio rehab ranged from those with manual jobs to the elderly retired. I had AF before and after the operation.
That was a long to cope with it. Many seem not to be aware of anything wrong. One lady I met at the AF clinic had been a profession dancer in musicals with her congenital defect. She went to the doctor with a chest infection and that was the first she was told of it..
How many weeks cardio rehab did you do? I was not at all keen on going but I kept on getting nagging phone calls.It was supposed to be 13 weeks with mine but I missed a few for various reasons. I did not carry on for the next stage.
There will be a short video available to clinicians in the UK and USA called "John Knight's Story" that covers AF, anticoagulation, exercise and bleed risk. It may answer some misconceptions.
I had no symptoms whatsoever of af but was obviously at risk of a stroke. It was discovered on a visit to A&E on an unrelated matter. My GP practice now has a procedure whereby all patients for their walk in appointments have their pulse checked and irregularities noted, whatever reason they have for coming. This may help to find people like me who were unaware they had af. Perhaps more GPS could try that approach.
At first AF is a very lonely place. AN irregular heartbeat is not like a throbbing big toe - it feels life threatening! Lying alone in bed when it is really going hard, trying to decide if you should do anything like going to hospital, don't want to make a fuss, but it is your heart! I have also found some doctors not v helpful, and difficult to get an appointments with my Consultant which are few and far between. I haven't felt much support from my doctors, and do still feel scared sometimes and don't know what to do Any suggestions? Barbara
Ignorance of GPS. I spent 8 years after being referred to a cardiologist about AF. The GP received the report from him but never passed it on. I complained about PAF attacks and the GP did nothing for 8 years despite over 50 12 hour episodes. Then I went to an EP recommended by a friend. Some GPs are totally ignorant. I didn't have the required insurance so had to delay my ablation for a year waiting for it. All due to the GP.
One of the GPs in the Practice wanted people coming for a flu injection to be checked with a finger Oxymeter with a bpm and Pleth display to identify those with AF. The suggestion was dismissed by other GP 's and so it was never implemented. It still seems to me a good way of identifying people with AF.
Despite having a history of irregular heat rate and monitoring, I had to convince a GP that I had AF before I was referred for a Bruce Protocol test.
Some EPs still suggest Warfare as it''s reversable and don't seem to be aware that Pradaxa has Praxbind as a reversal agent. I wonder if CCGs are applying financial constraints when it comes to anticoagulants.
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Oops! My predictive text is up to its tricks again. I can't recall any EPs who suggest warfare for AF. Warfarin might be recommended though.
I have been on it for 10 years+ with no ill effects.
I even severed an artery in my hand in January of last year and whilst the whole drama in A & E was a bit scary I am still here to tell the tale.
Warfarin is not a big deal.
Pete
I've found that junior doctors haven't heard of Dronedarone, Amiodarone, cryptogenic organising pneumonia and pulmonary toxicity. That can be critical for people with AF and, there''s a problem as it bridges the areas of cardiology and resperatory. Fortunately for me the North Bristol Lung Centre became involved and we're literally a life saver.
Understand we take other medication and sometimes its not supposed to be taken with what you have also prescribed or at the same time. Like prescribing Digoxin when you take Omeprazole they should be taken at least 2 hours apart but I had to Google it all, and why prescribe a drug like Digoxin when it has bad press. Plus the reluctance to refer to a cardiologist and when they do don't keep you informed they have.
Last year my GP twice referred me to a cardiologist at my local hospital and no appointment materialised.
At my request he referred me to one elsewhere and again nothing happened. I phoned that hospital and was told that they triage referrals and decide if the patient should be seen.
Thanks for the opportunity to contribute to your talk.
If your audience is mainly GPs then the message has to be improved communication and also to ask them to try and walk a mile in "our shoes".
For me I have had PAF for 26 years. Because it is Paroxysmal I know what normal living feels like.
The contrast when I am in AF is that I have nausea, breathlessness, lethargy, exhaustion and sometimes sleeplessness. I believe I have a fairly cheerful disposition even when not feeling well. It is difficult to not be me and therefore because I haven’t got an obvious injury or similar it is so difficult for the doctors to really appreciate just how bad I feel. In my case added to the trauma of AF (because that is what it is) I have had severe urticaria for weeks after some of the procedures that have taken place in the hospital.
I am now a semi retired consultant and do not answer to anyone except myself. However, when employed I found it very stressful and my employers where not always as sympathetic or understanding as they should have been. I know we have had other forum members who have been told by their employers that if they continue to be sick with AF they will have to take time off without pay.
During my years I have been under the care of a number of consultants. They all have a different view on my condition. Not surprising but as our forum will illustrate the care for an AF sufferer differs wildly geographically in the UK.
Those lucky enough to be near a centre of excellence, like me, have the finest care available whereas many live hundreds of miles from such specialist units and therefore they have to fight sometimes to be referred.
Putting medical skill to one side the art of communication is paramount and if any advice could be taken away from your talk by the professionals it is “improve you communication skills”
An example of bad communication for me the other day was that a blood test result showed low sodium. My doctor called me to discuss the ramifications, this was good. He then went on to say “we will take another sample in a couple of weeks and I will call you if there is still a problem.” I said thanks that was good but could he also call me if there was no problem as I have no way of knowing if I am waiting for a call or not that may or may not come.
Finally about 10 months ago I put a post on our forum which is also pertinent and relates to the short message I posted a couple of days ago on your thread. It reads as follows:
"I was mulling over recent comments where doctors have told some of our fellow sufferers that AF is not life threatening and they should in essence go home and put up and shut up and stating that any treatment was just intended to improve quality of life.
Surely that is the case with many medical conditions from a common cold right up to the serious stuff.
The medical profession is not only there to deal with life threatening problems.
To those who have been given this brush off, my advice is do not accept the status quo but keep plugging away."
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