Tomorrow I have been asked to be part of a GP training day.
If there is ONE thing you would want your GP to do/have said/done when you first went to them with possible AF - what would that be?
A Question for you: Tomorrow I have... - Atrial Fibrillati...
A Question for you
Written by
CDreamer
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144 Replies
•
Best thing they could have done for me at 40 was not to dismiss it as too much caffeine etc ,and send me to specialist ,it took me a year to find out why I felt so bad and heart was all over the place ,,, 4 days in hospital with heart rate of 175 ,,, drugs didn’t work so I had to have cardio version ,,,,
Same for me and my dad anxiety, and vertigo till they caught it 🤷♂️
Nice y can cooperate with your GP. Maybe more attention that Afib is not life threatening, although it’s a heart disease. Especially in the beginning you wonder what’s is going on and naming ‘ something on your heart’ is triggering a lot of stress. Succes 🤞
AF may not be life threatening but it causes other heart issues which are. I have problems with my valves due to an enlarged atria, caused by the AF.
What a useful thing to have been asked to do CDreamer. I have to agree with Truckerclark about the dismissal of symptoms as caffeine or anxiety. It's the assumption that we are stupid or that our symptoms don't matter which is so infuriating. And please, doctors, never say what was said to me when I persisted with seeking a diagnosis. I had mentioned that my fear at lack of diagnosis was having a stroke, and a locum said "oh well you are quite likely to have a stroke anyway at your age"! In which case why the rush to prescribe an anti-coagulant when I was finally diagnosed?
LaceyLady• in reply to
Where the hell did he train? Opened mouth without engaging brain!
• in reply toLaceyLady
Bedside manner….Fail! ☹️
Singwell• in reply to
Gosh. Sounds similar to one of my experiences. Went fir a routine blood test a month or so after diagnosis. "You do know it'll only get worse, don't you?" The nurse said. Thank god for this forum!
GrannyE• in reply to
Did you change your doctor?
wilsond• in reply to
Omg
CDreamer• in reply to
I have been involved in a few training sessions and I think it a very useful things to do, if nothing else than to help ensure that GPs don’t say things like ‘it’ll only get worse and that you’re likely to get a stroke’!
Do they really know the impact of what they say is?
• in reply toCDreamer
Sometimes I honestly feel there's a little bit of spite in what some of them opine!
CDreamer• in reply to
I’ve certainly come across that - one consultant refused to see me when their registrar asked them to as I was in clinic and in AF and they suggested a cardioversion then and there and the reply came back - no, let her go back to the person who did the original ablation! Even the registrar looked stunned.
Cha275rL• in reply to
Before I was diagnosed, my heart rate went up to 180 bpm and stayed there for hours, so I rang my doc. He asked if I had a pain in my chest, I said no, so he said ‘well if you get one phone 999.’ Click. End of conversation. Gulp! It happened again the next week and I was scared to phone again, but I did, and I got the nurse who sent for an ambulance, and that’s when they found the AF. No medic should make you feel like that.
Tomred• in reply to
what training did your dr have, terrible thing to say.
SilverliningsForNow• in reply to
Mine was a classic. My EP said immediately after my ablation the only reason you’ve got AF is because you’re over sixty and overweight! 😳
Telling me I could aways ask for reassurance when in those early days we get so worried about it all and not understanding what is wrong.
When I asked the consultant in A&E what the problem was with having AF she said the heart can grow tired to the extent it may give up and stop.
I would have liked to hear the words it won't kill you.
I do wonder where that myth came from as it seems very prevalent. I think we have proved that’s not the case Jean!
The only thing I can say is it was 17 years ago and I think a lot has been learnt about AF since then.
I went back to Sinus Rhythm 20 minutes before I saw my GP, he advised I go straight to A&E to get an ECG, if it happened again, I did and got diagnosed. I think that was good advice.
To actually listen to you and not to instantly dismiss it as anxiety! Especially to someone who’s never suffered anxiety in his life!
Doctors need to stop thinking they know everything and just listen to the patient and try to get into their shoes. Most doctors are very intelligent people and that’s probably part of the problem as their people skills can be appalling.
It makes me angry when someone writes on here that doc has said it's anxiety. I want to bop that doc on the nose. X
Couldn’t agree more Jean 👍
Some people label boxes…..Some people label jars……
Drs label people for a living and if one of them doesn’t fit they’ll either stretch it beyond all recognition and slap it on you anyway, leaving you like a beached whale in a corset or it’s “take 2 of these, cheer up, stop worrying and on your way peasant, I have many more people to label” 😂
I had previously had an episode of AF which put me in hospital but my GP didn’t make a connection - I gave up when I got the ‘are you stressed’ conversation re my mystery exhaustion symptoms.
Grrrr!!!
My GP once said to me, "Never in all my years have I had another patient like you". I wish I'd asked him what he meant, guess it was kind, caring and gorgeous. Just may be it was me having an opinion. Odd really, because I thought I'd always been quite nice to him. 😅😂😂
My doctor generally looks worried when I arrive. I suspect it's because he feels guilty for prescribing me Cipro . He perhaps dreads me complaining about my ever present tendonitis which is exacerbated by FQ toxicity. He also has me classed as an awkward patient because he knows I resist medication of any sort . I know he has changed his mind about the usefulness of Fluoroquinolone antibiotics because he admitted as much and I'm pretty sure it's because of the scientific literature I brought for him to read ( he can read English) . As the consultation progresses he looks more cheerful and I can see his palpable relief when I go . He seems happy to prescribe any medication I do ask for ( like Tramadol) as I think he knows I will only take it if I absolutely have to. He tried to persuade my husband to get vaccinated but has never raised the subject with me . He would be gobsmacked I think if he knew that I had actually had been jabbed. As for afib that is my cardiologist's domain as far as he is concerned and once on a specialists "books" here you can phone directly for an appointment whenever you want without going through the GP. He would not change my medication without the cardiologist's say so. He has never ever suggested that anything I might have is down to anxiety!
You sound a lot like me Auriculaire. My GP knows not to try and get me to take any more pills too. If I see him at the surgery when I'm waiting there for something other than to see him, say for a blood test, he will always stop and talk. They have a really lovely young lady doctor there now who I prefer to see. She's full of life and smiling. I feel like I'm talking to my best friend with her and she calls me by my Christian name. She shows compassion too, something you don't always get a lot of from a male doctor.
• in reply tojeanjeannie50
Can I help you with the bopping Jeanjeannie50? 👍😀
jeanjeannie50• in reply to
Yes. you certainly can, the more the merrier. They'll know not to belittle a patient with AF again. 🤬
Me too!
BobDVolunteer
Since most GP centres have ECG machines why not arrange for a simple phone call to arrange a quick ECG when AF intrudes . I had that arrangement with my medical centre which meant that usually within 20 minutes whatever was happening was captured for posterity.
• in reply toBobD
Yes, yes and yes BobD!
As it is quite a long time ago, I can't really remember the first time I saw GP about the possibility of AF. I can't even remember what prompted me to go but presumably that I had noticed something was amiss. It took quite a long time to get from that first visit to an actual diagnosis. I had heart rate monitors but nothing showed up of course but the Consultant told me to go to my surgery if I felt my heart was mis-behaving and ask for an immediate ECG. I thought this was a bit unlikely to happen even then but I did it and that eventually led to being carted off to A & E with a suspected heart attack. It wasn't but it got me a bit further towards a diagnosis. What I would like now is video calls instead of just phone calls if we can't have face-to-face.
I asked about that but evidently that’s not possible for ‘technical’ reasons. I suspect it’s because lack of Broadband capacity as we have yet to get fibre throughout the town.
We can have face to face though after telephone triage by a GP.
Thank you for your reply CDreamer. I have gone down that route of being triaged and then getting a face-to-face appointment. I think I have probably had very good care from my local Community Cardiac Team. The current GP on the team took over just about the time we first locked down as the previous GP was retiring at the end of March 2020. Initially, of course, any contact was via the telephone and I found that rather difficult having not met the new GP ever. However, I did get to meet him once we unlocked and I think he has been very thorough in trying to maximise my meds and changing me to some of the newer ones like Entresto and Dapagliflozin which I think have helped me. Some of my appointments with him have been via the phone and some in-person. I have also had regular 3 monthly kidney function tests. He thinks he has done as much as he can to stabilise my heart condition so I have been discharged but, of course, could be referred back to them if I had concerns. I am also linked to my local hospital remotely via my CRT-pacemaker. I had more trouble in seeing my "normal" GP, who left the practice some time last year I think, as he was working in "red" Covid zones. I asked if I could be transferred to the Cardiac GP for all my medical requirements as having two different ones for different conditions seemed a bit daft to me. However, this didn't happen and I now have a new GP whom I have managed to get to see once. Just getting through to the practice takes a huge energy and time commitment so it certainly focuses my mind as to how important I think it is that I see or speak to someone.
I was more anxious about ectopics, didn’t dare ask if my heart might stop! I was diagnosed in hospital and told there were several treatments available (that was 2000) so more since. I think immediate reassurance that there are treatments for the distressing symptoms would be very helpful. ‘It won’t kill you’ isn’t 100% true so I don’t think a doctor should say that but good to say ‘there are treatments to keep you safe and relieve symptoms’ would be helpful to hear. Doctors think ‘rate controlled, stroke danger reduced, job done’ but unless they have had AF themselves they can’t understand the sensation of terror in their patient!
True, Buff.
What I wished I'd said to the student surgeons recently when in hospital 'Listen to the patient and HEAR what and how they tell their story'
🤣🤣 no we don’t John so for you to agree there must be some truth to it 👍
I wished the Dr's would listen to what the patient is saying, and not try to brush it off as Anxiety.It was after about 18 months I saw occupational health and I told her that I felt like an 8 cylinder engine but was only working on 4 cylinders that she referred me to see a cardiologist! 😕🤔
I told them if my heart was a bike I’d tighten the chain and oil it. Not sure my description helped. 😂
This is a brilliant thing to be involved in, CDreamer. Do let us know how it goes!
For many of us it’s quite a journey between first going to the GP saying something like ‘my heart keeps feeling odd’ and the actual capture of an AF reading and diagnosis. So there’s different things at each stage of the journey that would be most important to me.
At the beginning, when first talking to the doctor about the heartbeat sensation/problem, the main thing I would like is to be taken seriously and listened to, and acted on. (Which I was - I feel very lucky.)
If it’s an intermittent sensation, the action I would like is for him/her to talk through my options for getting a recording of my heart when I have an episode. Definitely I would hope they would say I can come to the surgery any time it strikes to get it on an ECG, but depending on the patient, maybe also discussing other home-capture options (eg NHS monitor, or the self-funded options out there.)
For me, the unknown nature of what’s going on is the hardest and most stressful thing at this stage.
Once at the stage where AF has just been diagnosed, like others, the one thing I needed most was reassurance. Not empty reassurance, but good advice given in an unhurried and understanding manner.
Eg I would hope for an outline of the basics of what it would mean to my life - and the opportunity to come back another time with questions that will occur to me later. Also an assurance I will be referred to the appropriate medical specialist; and - very important!- a recommendation to join the AFA.
I was totally at sea with my diagnosis until I found you lot here, with your combined wisdom, experience and kindness. That genuinely continues to make all the difference to me.
Jx
CD,
My GP did all I could have asked..... after having falling BP for some 6 to 8 hours, from 136/80 ish down to 76/50 ish he called for me ( if I could make it) to see him, made his own checks, formed his own opinion, referred me to East Surrey Hospital ( near to where I lived at the time) and sent me immediately. East Surrey were waiting for me, took me in and a few hours later pronounced paroxysmal AF, kept me in for 5 days of tests and finally added I could be at times asymptomatic.
The guy was brilliant ... just how kool was that. Total elapsed time from starting to feel unwell to diagnosis about 9 to 10 hours.
John
CDreamer• in reply to
That’s extra ordinary John 👏👏
Mine took ten years and a house move and new GP who's Mother had AF so they actually knew what it was.
Some years ago I had a brilliant GP, not a favourite among his colleagues, why, because he called a spade a spade 😂If he didn’t know he’d say to you and send you to a consultant. We got on like a house on fire. Good things come to an end , he had to retire😢
Many many years ago when I was only about 4/5, mum had nipped to the shop and we were locked in the living room, GP arrived got me to open the window, he climbed in, examined us, left a prescription and left the same way. You can’t even get them to leave their desks now.
My GP at the same age once carefully stepped over Clarence, my imaginary crocodile! His partner looked like James Roberston Justice and smoked like a chimney. When you queued up for half an hour in a freezing cold waiting room when you went in to see him you could only just make him out across the smoke filled room.
I too remember when I was a little girl and Drs still made house calls. And we lived in the country so it was a pretty good drive for the Dr to come out. Sometimes he had an emergency and had to leave people sitting in his waiting room. No one seemed to mind all that back then. Some days the Dr would stay in the office til midnite in order to see all the patients. Drs would never dream of doing any of that now. Drs nowadays are one size fits all. No personality whatsoever. No connection to the patient. Nothing. I agree with many of the comments on listening. Just once look up from the computer AND look at ME and LISTEN to ME. PLEASE.
They ‘listen’ without hearing
So true.
GrannyE• in reply to
Gosh you were lucky
As my PAF hid from my GP's ECG efforts, I wish he had asked me to attend for an ECG during the strange episodes, not days later when I was in NSR. It took 6 years to catch AF on an ECG.
Like lots of people here I found you guys & Dr Gupta the most valuable at the start! Then the John Day books. But all this was found by googling not by medics helping! Education is so powerful but not the first line of support from clinical staff. I work with GPs as a manager. My GPs have told me I know more about AF than they do!
Not uncommon PW. I have a friend who is a GP and used to call me for advice.
GPs don’t have the time to bone up on medical advances in all fields and no-one is more interested in information about conditions than the patients themselves. My doctor used to greet me (in the days when one could actually see them) with the words ‘how are you going to educate me today?’ And he was genuinely interested.
More information about condition, what happens next, instead of just sticking us on medication!!
Have to say my GP was excellent. Did an ecg, blood pressure etc. didn’t exactly know what it was but got straight onto cardiologist at local hospital for advice. Next thing I knew I was on my way to a&e. This was @ 17 years ago. x
I would have liked the GP to have paid more attention! I first went to see him when I had a very fast run of heartbeats which lasted an hour or more - can't remember exactly. He ummed and ahhed and didn't send me for an ecg at the time. It may have saved me a lot of grief later if he had.
One thing? Active listening.
See me in person and talk to me!! Since a phone diagnosis 12 months ago have not seen a gp or had any follow up checks!!
Please listen to patient, within reason,I know some do go on ! Look at patient holistically not just as a knee or a hip. Thankyou
GrannyE• in reply to
Quite right. GPs need to look at the whole patient not just the left elbow but of course they don’t have the time.
Keep in touch after diagnosis
Hi Sasha - why is that important to you to keep in touch? I ask with genuine curiosity. My GP set up regular tests for me but unless I contact them, they don’t contact me unless it’s to do with the tests.
Hi, thanks for your reply. I thought that I might be contacted to see if the meds were working. I still have episodes and wonder if they are doing the job. I was supposed to be getting a phone call from the cardio nurse but no one rang.
I think that they should follow up on whether the medication prescribed is doing the thing that it should do and how it affects the patient. I have never yet had anyone ask. If they don’t know what effects it has they will continue prescribing even if it is actually doing harm.
I suppose that is a case for just how we as patients also have to be proactive and not just sit back and take the pills like ‘good’ patients.
Whilst your suggestion is reasonable I think that is more the job of the pharmacist and indeed I have calls from my pharmacist asking that exact question,
• in reply toGrannyE
My pharmacist was the only one to check on my new meds ! Has offered any help and advice, heart meds are often powerful stuff ! GP gone missing ! As for holistic care as a retired qualified nurse that was basic training !
GrannyE• in reply to
Thing is if the GPs have no feed back how do they know what works and what doesn’t? They will continue to prescribe the wrong meds for the wrong people
To suggest (if a patient can afford it) to try to capture the AF on a home device. Mine evaded ECGs at the surgery. My GP just dismissed my symptoms 'palpitations' - and I think saw me as some anxious oldish woman. But also, don't try to argue against the cardiologist 😒 'it doesn't look like AFib to me' . Yes well it looks like AFib to the specialist so butt out!!
Most of us get to see a specialist cardiologist for treatments/medications. Some specialist medications are discounted by local doctors because of adverse side affects to the pt. Do local doctors liaise with Pts specialist cardiologist before advising the pt to stop taking these medications??
Well I know mine do but the GP’s job is to be the gate-keeper and will know (or should) you and all of your conditions. Specialists are exactly that and only see the condition they are specialists in so this can lead to conflicts if you have more than one condition and it is the GP’s primary job ensure that no harm is done but that should be a 3 way dialogue with patient, GP and specialist. Good point though because I have come across people who say that their GP won’t prescribe what the specialist suggests.
I feel very grateful that my GP did dig his heels in once and told me he was not prescribing me a drug the consultant asked him to. He felt it was too powerful for me personally. It was tricky at the time because he left it to me to communicate with the consultant. But further tests showed he was right, and the consultant agreed it could have done damage.
I’m very grateful for any GP who views me as a whole person, not just separate symptoms to try to fix.
My mum who who is 90 and suffers from AF - her GP recently took her off Spironlactone 25mg because of her low bp and very low hr - it was making her feel giddy/dizzy 30 minutes after taking her morning meds which include 1. 25mg bisoprolol. (she's also on thyroid meds and other usual assoc meds etc.) Her bp was very high today 173/89 hr 51 and then an hour later after taking meds 107/51 hr 48.I'm concerned that there are big fluctuations happening and would like some specialist advice because we never see the same doctor when we do an e consult to our surgery.
My cardiologist prescribed bisoprolol with diltiazem as a fallback if that didn’t suit. My GP was not happy because I have scarred lungs and asthma which is well controlled until I have a respiratory virus and then I usually have AF as well, so after discussion with me I was prescribed diltiazem straight away. The cardiologist was not happy but I was pleased, has worked well for me.
Back in the day, to diagnose AF and not think it was not a problem.
For some years I've been a mystery patient for medical students (different level I know) and, once we are into the session, I use medical or descriptive words to see if they have adeeper understanding.
Hi CDreamer. I wuld want the full picture. What is A.F, why does he think I have it, (prove it), what type, What caused it, What will it mean.
But first give him the symptoms.
All the best.
I was diagnosed on the day I had the stroke with A.F.. 3 days and a Carotid Scan I was diagnosed with Thyroid Papillary Cancer.
Thyroid cancer causes A.F.
Otherwise there would be no reason why I have persistent A.F. Lucky that I have a bad ribcage and I dont feel it pounding. My heart has been pushed to left with more space.
But before the stroke I had sweating from face, and on exertion no energy.
Cherio JOY
Probably these already given but here goes 1. Immediate aftercare. Call patient once discharge notice received- ask them how they're getting on and if they'd like to know what to expect abd discuss management strategies (which should include lifestyle review)
2. If your patient presents saying they 'think it might be my heart' you, or the nursing team do an ECG and its borderline ANYTHING (e.g. 47BPM), your duty is to keep an eye on this patient, not tell them "your reading was normal". (Yup this happened to me. Within 2 years I'd develop AF)
3. Be there if your patient is in AF. Organise your team so that if your patient is known to have AF and calls because they're worried, thar someone responds. It can be the GP or nurse. What HR, how feeling etc, and how long? Advise them appropriately so that they can stay put of A and E unless it seems necessary. (My GP has a rubbish manner of communication and it took a letter of complaint to get the surgery to improve its patient liaison. But when he did shape up he helped me during the pandemic by calling back during acute AF episodes and telling me it was OK to take up to 300mg Flecainide within 24 hours if needed). We need that handholding sometimes
I’ve had AF for years but dismissed it as normal palpitations that everyone had until last year when I had I had my first big AF episode and ended up in A&E, ended up leaving 10 hours later after an ECG, IV flecanaide and a box of bisoprolol and Rivaroxaban and a follow up appointment with a cardiologist but absolutely NO information as to what I had or how it would affect me. A really scary time tbh, it was only at my Ablation in October that I got any real information and the rest I’ve picked up from this website
I was told by one GP I was a hypochondriac. Ended up spending a lot of money for counselling on health anxiety. Wasn’t until a Gp believed me that my heart was beating irregularly I ended up wearing a heart monitor which detected Afib. Took approx 2 yrs. Heart monitors must be worn when patients first tell their GP of heart problems
• in reply tostoneyrosed
Had a 24 hour heart monitor fitted in November, bad episode in December,EP says she has results and will ring when she has time !? What is the point of diagnostics when you can’t get results for literally months., taken 2 years to find I have MV regurgitation. PAF , arrhythmia and who knows what’s next ! Gone from fit healthy woman to blaaah !😂. Still waiting
stoneyrosed• in reply to
When she has time? 😳. Maybe it’s good news, I hope so. Good luck 👍
" If these drugs I have given you have massive side effects and stop your life, then come right back and we will find something more suitable"
Tbf it was the Hospital not the GP in my case
Yes!!! This!! I have had nothing like this. On the contrary, it’s a battle I feel I have lost with both GP and cardiologist, to try to get past the ‘it’s generally well tolerated/you need it for your heart rate’ shrug every time I raise my concerns about bisoprolol and how I’m feeling. Or over specific symptoms I wonder if may be caused by my meds.
To listen!
Take me seriously when I described my SVT events and their effects on me.
In all fairness though, it was the consultant cardiologists who dismissed my symptoms as anxiety because of course the brief ECG you get before you actually see the medic is hardly likely to capture an event.
My GP told me I had a chronic condition and I needed to learn to live with it !!!!
Provide an AF nurse in every GP Surgery, mine doesn't have one. I have an Asthma Nurse but not an AF nurse.
What a good idea Nerja!
It’s a good but unrealistic plan as our health service is currently organised and funded as all of the Arrythmia Nurses in our area are funded by charities or drug companies as are most specialist nurses, and so are on limited contracts. With Charity funding decreasing I think we will be struggling to keep the few we have. I can’t see GPs funding them.
What is more realistic would be if 10 or so group practices in an area liaise and fund for services. This does happen to a limited degree in our area with various services and specialist treatments being accessible through a hub but there are a LOT of people who have fund raised and planned, including several GPs, constantly to make it happen.
Thanks for the reply CDreamer, I fully understand your comment especially as the NHS is running to capacity with Covid. My reason for making the suggestion was because recently I started to experience symptoms that where new to me and caused a lot of anxiety. I spoke to my GP and asked him what they where and his reply was I Havent Got A Clue ! I'll ask Cardiology. As a result I was refered to Cardiology , 3 months later I saw a lovely AF nurse in Cardiology who explained the episodes in full and explained it was all part and parcel of having AF. Surely this was a complete waste of time and money , the AF nurse wasnt too pleased that id been referred ither. An ear is all we need sometimes as new symptoms come along that we dont understand especially for a Newbie. To provide an AF nurse anywhere in the community would be a great help for AF patients as it would reduce the load on an overstretched NHS. Asthma, Chrones, Parkinson to name a few all provide a Nurse specialist that you can ring to make an appointment if you just need help and advice. I say this as I have friends with these conditions and the Nurse Specialist provides help and reassurance when needed. Thank goodness for this Forum is all I can say as AF to me is a very lonely condition to have. Moreen
Thank you all so much for replying, it’s really helped me to consolidate my thoughts on how to present myself. The gist of what you all seem to be saying is that you want GPs especially to:-
First - listen to what I’m saying and help me to articulate what my symptoms are in an empathic manner. Ask questions but don’t make it feel like an interrogation.
Second - respond indicating that they have listened, absorbed and explain what action is required and arrange it.
Thirdly - help you to get a diagnosis as speedily as possible, it used to be taking a pulse - which is how a trainee GP diagnosed me - now it has to be an ECG so get an ECG done in the surgery or organise for a mobile ECG to be lent or fitted. Some surgeries now lend out a Kardia.
Ask the patient what they think is happening? I know I have found this question very helpful because it indicates to me that the doctor has listened, believes me, is treating me as an intelligent human being and who might have a good idea what might be happening and how I am thinking and give them an opportunity to confirm or dispel the possibility.
Ask if palpitations are there all of the time or come and go - that to me should be a basic question! It will help waste of time taking an ECGs when nothing is going on.
Recognise that anxiety about any heart misbehaving will be high but that doesn’t mean that the patient is overly anxious or that anxiety is causing the palpitations and therefor nothing to worry about. I don’t know about you but as soon as I’m told it’s nothing to worry about I worry about what exactly it is I don’t have to worry about!
Use clear and concise vocabulary and explain medical terms and what they mean.
Refer to a specialist for further investigations as and when required or book the patient in for follow up appointments if in doubt.
Know about organisations that can help with support such as Arrythmia Alliance, AFA etc and give out links.
Now a challenge for you all - how can that all happen in a first 10 minute consultation? because that is all that GPs have allocated to them. If we as patients have difficulty in articulating our symptoms, thoughts and fear, which we most probably will be on first appointment because fear obscures logical thinking and emotion takes over.
Do we as patients need training in how to present ourselves, be more accurate about our symptoms, be concise, be clearer about what we hope (can we dare to expect?) the GP to action in a polite and curteous manner?
We also would like ongoing support and reassurance and for someone to be available for those extra scary moments such as those experienced by us all in lockdown if we have a bad episode. I know I was very happy that my GP has always supported me in that way and I am most thankful for it because I found it very reassuring. I’ve not had to contact them more than 2-3 times in the last 7 years but the practice has been fantastic, including the receptionists.
Please let me know if I missed something and thank you all very much!
This sounds brilliant, CDreamer- you have distilled all our thoughts beautifully!
I realise I’m too late for your meeting now, but on the question of how on earth to cover all that in a 10 minute appointment (!) I’d say that for me it wouldn’t need to be just one appointment. If at first I had a chance to express the problem, with them asking relevant questions and arranging how to capture the arrhythmia, that would be all I’d need to start with. Similarly, at diagnosis, I would be happy to have a brief introduction to the condition, reassurance and outline of provisional plans, then come back to discuss further when I’d got my head around it a bit. That’s what happened to me, in fact.
So follow-up appointments are the key thing to me. But of course, continuity with the same GP is crucial for that to work. And sadly, in the present situation even a single appointment is hard to come by, let alone a series of appointments, or the offer of a double appointment...!
I agree that we as patients could do with learning how to best express ourselves concisely and effectively, giving the doctor the information that will most help them to understand us and help us. 
Jx
I know with many conditions medical/educational/psychotherapeutic 6-8 week courses help tremendously, as does this forum. The great advantage meaning you reach many patients for time spent and once material is put together - it’s reusable.
I just wish more doctors would engage with them and even when they do unfortunately they are SO used to speaking to peers that many forget to speak in none medical language, don’t explain and show nothing but studies - which are NOT helpful to most people. Attended one such Zoom session recently and left after 15 mins.
But that’s not going to happen in person for some time!
Just read your post again and picked up on the ‘possible AF’. If not immediately diagnosed I would like my GP to take me seriously and lend me a Kardia!
In no particular order
1 Suggest to buy a pulse oximeter and advice on its use
2 Lend a Kardia
3 put on a regular blood testing programme
4 give out a list of known triggers in other patients
5 give out the web address of this forum
Not going to happen but we can all dream….
What a brilliant thing to have been asked to do CDreamer, very useful. My AF was found coincidentally when I was in A&E for another condition. I was referred to a cardiologist and eventually an EP . I just wish I’d been referred to the specialist earlier. Then I didn’t even know they existed as I hadn’t found you . The GPs at my surgery tend to dismiss it as nothing to worry about and do not understand the impact to your life it can have.
As a complete by the way my husband took part in a similar exercise through The Macular Society where Macular Degeneration patients gave their opinion of diagnosis. So many were just told bluntly ‘you’re going blind , nothing we can do‘ out of the blue it was a disgrace. This has resulted in a change in training so hope your study helps.
That AF is basically incurable at present but it is manageable with attention to the whole person,stress,sleep,diet, and medical interventions .
My response is the same as many others here. My AF was undiagnosed and dismissed for some years. As it is paroxysmal, it wasn’t captured either on ECGs and even when given an event monitor for a longer period it didn’t show anything as so didn’t have an episode during the time I had it. I struggled to be referred to a cardiologist. GPSs really need to listen and not be so dismissive - I was even told at one stage that it couldn’t be anything serious or it would be there all the time!! think one of the most helpful things would be for a system where it’s possible to get an ECG done quickly when you are actually experiencing symptoms rather than having to book an a future appointment by which time the episode may have passed and symptoms subsided
I agree - and that’s the beauty of the Kardia and similar devices.
Getting told it is a panic attack and when I feel dizzy sit down where I am. Only to find out over 10 years later it was AF.
I think that being encouraged to go straight to your GP surgery when you feel your heart is behaving abnormally, is paramount. It would only take minutes for an ecg to quickly diagnose AF if it were possible to do this. In my case it took more than 2 years to finally be diagnosed with af after frequent trips to my GP and 2 referrals to cardiology. The two 5 day heart monitors I had didn't pick up my AF. Why don't we ever go into AF when we are wearing one of those blessed monitors? 🤷♀️ I was eventually taken to A&E by my husband after 5 hours of awful AF, where when monitored, my heart rate was hitting 190bpm +. I was eventually chemically cardioverted, and came away with bisoprolol and flecainide. Diagnosis done, but a long time coming.
And I think that will resonate with many when you have PAF. I had so many trips to A&E in the first few months trying to get an ECG in time before I self converted. That was in the days prior to Kardia readings being accepted so hopefully things have improved generally.
I did have a Kardia at that point. I had only had it a few weeks and realised how bad my AF was, which was why my husband took me to A&E. As you know AF is bad enough at the best of times but constantly going at such a high rate made me feel absolutely awful. And of course, that rate was when I was sat very still in a chair. You only have to stand up and it rockets higher! I don't envy anyone having to go to A&E for a diagnosis in the current climate!
It won't kill you. Then direct you to this site.
It could cause a stroke which could kill you , if you aren't taking an anticoagulant, as the blood can pool and cause clots while in a.fib.
Any health care professional should first find out something about the patient. Is the patient a health care professional or has spent time learning about and experiencing health care related to the problem at hand. I am in the ER. I asked a question about a drug they want to prescribe and I probably know a bit about the drug. I was told you are not a doctor so your input is not wanted. I think the biggest hurdle to good care is open and truthful communication. Doctors are not the fountain of all knowledge. One pertinent comment from a “ non-expert patient on the topic being addressed” may bring forth a part of that knowledge that may have remained buried.
Doctors should task patients to research the problem and bring back useful succinct information since doctors are so busy. I have sent my GP studies that have changed his entire approach to AF. I don’t understand all of what is in the study but he understands more because his “ health care fountain of knowledge” is far more extensive than mine.
I went to EVERYONE and said could my AF be triggered by Letrozole the cancer medication I was on for breast cancer. EVERYONE said very unlikely and dismissed it. Eventually after I started it again following my ablation and it triggered my AF EVERYONE said, including my lovely oncology Professor at Guy’s looks like its the Letrozole then. It is now accepted that for some women this can be a trigger. Doctors need to be aware of that. Great you’re getting the word out ❤️
Listen to "older" (58 at the time) women. Don't tell them it's hormonal. Realize we know our bodies and know when something is off. I went to ER , hr 160 to 30 all night. Next day dr said he was discharging me no diagnosis. A nurse came in and said Don't go home, they've done nothing for you. Itold dr I didn't want to be discharged....admitted to hospital, took a week for my heart to stabilize....hormonal? No...
Like a lot of replies, whenever I hear the word anxiety/stress from a GP I could just give up. I have weird feelings which I don't really know what it is, neither do they obviously , what I do know is its not anxiety
You are going to be ok.. thousands live with this everyday.
I would have liked my GP to refer me to a cardiologist instead of milking my ailment for the benefit of his wallet. I probably sent his kids to college, just on my doctor visits alone. I fired him. What a waste of medical school he was.
Wow. 111 replies. Speaks volumes. Good luck
CDreamer• in reply to
I think it’s always a popular thread when you discuss how your care or lack of affects you.
to have said unequivocally "you need to lose 10% of your body weight and exercise more"
Well that might not apply to everyone so I would add - if BMI exceeds 25-26. And have some support to help them do that!
I had a good meeting with my medical student - we talked for 45 minutes and they were very receptive to what I wanted to convey. I tried to include everything we talked about and told them about Kardia and HealthUnlocked and the value of talking with co-sufferers.
I said very clearly that listening and believing your patient was important as was establishing a strong working alliance; that one of the most damaging thing you could do to your patient was to dismiss their concerns, not actively listen and to fail to investigate.
I have great hope for the future of doctors in practice, a shining example of a caring and engaged young, very clever person with an excellent manner.
Well done 👏🏼
Well done 👏👌
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