Hi all. Feeling a bit abandoned at the moment. So many questions and not sure where to turn. A key one I’d like to know is should a patient in the UK with newly diagnosed AF with no known cause be referred to a cardiologist? I am finding I have no one person dealing with this and looking at the overall situation. GPs at my practice work part time and that in itself causes delays/difficulties. I had routine (not heart related) pre op ECG 13 weeks ago in July 2023. AF was picked up. It was 6 weeks before the hospital passed this to my GP. I was called in to the practice when they heard, had another ECG which also showed AF I was told. A GP prescribed various meds, each of which so far I’ve been told to stop due to side effects. I was also referred to a something called a cardiology rehab clinic at the local hospital. I saw a nurse at that clinic. Had another ECG which I was told showed AF. Was told an echocardiogram would be done. I asked about waiting times, thinking it might be quicker to pay in the current situation. I was told that wasn’t necessary and that it’d be done in a couple on months. That was a month ago. I received a letter yesterday with an appointment given for March 2024 for the echocardiogram. As is stands that’s my next appointment at the cardiology rehab clinic and no mention of seeing a cardiologist or anyone else at the hospital in the interim. When the AF was first picked up it was occasional. Now it’s persistent and very noticeable sadly. Normal rate but very irregular indeed. Neither myself or the GP have received any follow up/outcome letter from the hospital after my appt with the nurse there. A concern I have is also some of the drugs I’ve been given say not to be used with concomitant/ other heart issues. And a couple of them have made me very unwell indeed. How does anyone know at present what is or could be going on with my heart without an echo? Thanks in advance for your input. Sorry for the long post.
Atrial Fibrillation. Help.: Hi all... - British Heart Fou...
Atrial Fibrillation. Help.
This all sounds very unsatisfactory. In your position , if possible I would seek a private appointment with a cardiologist , preferably an EP ( electrophysiologist) ie cardiologist specialising and treating heart arrhythmias . It shouldn't have to come to this but unfortunately that is the way things are these days. You need to find out what is going on. Are you taking anticoagulants?
Thanks so much Jalia. Really appreciate you reply. Is there a way to find a really good cardiologist or EP electrophysiologist do you know? And at a place whether best heart treatment can take place? I’ve no idea where to start in that. I feel that if I’d like a cardio version or anything else moving forward it’s all going to get so expensive too. The DOAC’s were temp on hold as a joint decision whilst I started on the other meds. I am now being pressured to take them. I can understand why but it feels like the GP practice and hospital have ticked their box on that but none of the bigger picture is being dealt with. Feeling pretty fed up. As if the diagnosis out the blue wasn’t enough, the stress of worrying about whether one is getting the right care is horrid.
You can have an initial consultation with a cardiologist, ECG and Echo for around £600/700, the Echo being the expensive part.(At least this is what I think I paid 18 months ago). You can just ask for a consultation but I expect an ECG will he required.
You should be able to find a list of EPs on the AF Association site on HU. You might find it a useful group t.o join if you haven't already.
Which part of the UK do you live in?
If you have been advised to take anticoagulants then you really must.
Thanks Jalia, grief that’s so expensive. That’s really helpful though and also re list of EPs. I shall look. This forum and its members have proved so helpful. I can’t take the DOACs until I can get in to have the pre start BT’s.. currently struck down with covid. Joy!
agree, get to see a cardiologist and in the meantime make sure you are taking the right amount of anticoagulants.
Thanks so much for your reply. Feeling less alone already. Is it not routine to be referred to a cardiologist? I’m so shocked it’s not happened.
It should be, or so you’d think. The problem at the moment is the waiting time for a first appointment with the NHS could take months at best. It seems that AF isn’t considered an urgent referral, more of a routine referral, and often it’s expected that the patient can manage it under the care of the GP in the longer term, unless there are any worrying or new symptoms. Of course, it all depends on how symptomatic you are (some people in permanent AF don’t feel a thing), your AF burden (the percentage of time you are in AF) and what your best treatment options are. My experience so far has been very much a hands-off experience and I haven’t really been offered anything, which may be more appropriate for some people with paroxysmal AF, but other people may need more intensive management to bring their AF under control. It’s not an easy diagnosis to come to terms with, but you will get used to it and get to know AF. Many people are living full and active with permanent AF, once they get their long term management sorted out.
Thanks so much Autumn Leaves. Roll on a settled situation moving forward. I wasn't really symptomatic until I started the Biso. After that the AF seemed to increase and with it symptoms came. That could have been coincidence obvs but it’s certainly now become a quality of life problem. I think I’d find it far easier to get my head round if I wasn’t constantly worrying about this lack of resources in care. It’s an added stress I am finding. My current GP practice have a 6 week lead time for appointments so unless it’s a necessary med change and the appointment is initiated by them, you just don’t get to speak to one.
Six weeks? That’s awful. Certainly it’s not satisfactory if you have a new diagnosis of AF. Right now you need someone to explain it to you and what your treatment options are, what each medication does, and so on. Perhaps the BHF nurses could help you out, as far as knowing what you’re dealing with. It’s not easy when you’re just left to your own devices with maybe one appointment once in a blue moon, if you’re lucky! My first arrhythmia nurse appointment has been put back 6 months! It just makes you lose faith altogether. Don’t be afraid to call 111 or go to A&E if you’re feeling more symptomatic or unwell.
Unfortunately cardiology appointments are like gold dust due to very high demand and pandemic backlogs, and AF isn’t seen as a priority. I understand your predicament as I was only formally diagnosed with AF in December 2022. I paroxysmal AF so my situation may well be different from yours. You don’t mention specifically what medications you have been prescribed and are taking now, but if you have a Chads Vac score of 2 or higher you should be taking an anticoagulant. Other medications can be for rate control (beta blockers) or rhythm control (anti arrhythmics). I know that Flecanide (anti arrhythmic) should only be used in the absence of some cardiac conditions, but they obviously don’t suspect that to be a consideration in your case.
An echocardiogram looks at the structure of your heart and the heart valves in particular, and how well it pumps (ejection fraction). It’s routine for people with AF. I agree March is a very long way off. If you can afford to pay for an echocardiogram privately you could, but you also have to ask whether it would change how you manage your AF at the moment. Some people take Flecanide as a pill-in-the-pocket (PIP) but that may not be an option if you have persistent AF. Some people choose not to take beta blockers if their HR is a good normal but bear in mind that a high HR when you are in AF isn’t good for the heart in the long term. So you see, these decisions are very individual and what I do might not be appropriate for you and vice versa.
Arrhythmia nurses are very knowledgeable and helpful in my experience. Even without a formal appointment, I can still ring the hospital, leave a message and one of the arrhythmia nurses will get back to me. I accept that not all NHS hospitals and staff may be as generous with their time, but you’ve got nothing to lose by trying. There’s also the BHF nurse helpline who are very good at explaining things.
Thanks so much Autumn leaves. I really appreciate your reply. I have the DOACs ready to go but the joint decision originally was start the Bisoprolol, settle on it and start the DOACs. That’s out the window so they’ll be started when this covid I have has gone and I can get the pre start blood tests done. I’ve been prescribed Bisoprolol, stopped, then Diltiazem, stopped, and latterly Ramipril, stopped. Out of those the worst side effects were from the Bisoprolol. I don’t think I’ve ever felt so ill in my life. Just couldn’t get enough air in to breathe, couldn’t walk anywhere at all without a heavy feeling in my chest and throat, my Raynauds went off the scale and my stomach started to swell as each day went on. By the end of each day I’d look 9 months pregnant. I’m 66. I’ve no idea why and never had it before. I don’t have a fast heart rate with it thankfully. It sits at around 70 which has always been normal for me. It looks like I need to find a cardiologist and pay for that and an echo. I’d like an echo at the very least so that we know what we have to work with. Neither GPs nor nurse asked my family history ie of heart disease, which I thought would be a routine question. My older brother had a significant heart murmur. He died aged 21. The murmur was brought up at his inquest hence I know about it but there wasn’t evidence it influenced his death in the end which was said to be drowning (misadventure). My father had heart disease from age 60ish, COPD, plus other things. Healthy living man, non smoker. Thank you again.
Your welcome. Maybe it depends on severity of the symptoms. At one stage I was sent home by A&E but still felt unwell so booked private appointment with cardiologist. However before the appointment I got a sudden call from the NHS to go to A&E. Turns out I was in atrial flutter, that is commonly misdiagnosed. I assume the consultant had a look at an ECG from the hospital and recognised the problem!
That’s really interesting Rog_S. I’m very glad they picked it up. Grief. I passed out last year out the blue and fell 5’ backwards over a wall into woodland. I’ve never passed out in my life and had felt so ill just before it happened. I called the GP when I got home and was just told no need to come in, to come in in a couple of weeks for an ECG. Course two weeks later ECG was normal but I now wonder if that was the start of a problem and wish I’d just gone to A&E and ignored the GP.
Good heavens ! Your GP sounds very cavalier to put it mildly! Mine would have sent me to A^E!!
Looking back I really wish I’d just gone to A&E. I think it was a combination of total shock at what had happened and not wanting to make a fuss. How dim am I!
gracious !! After a fall in those circumstances you should have got an AE checkup
yr GP sounds hopeless !
my condition was luckily recently diagnosed after an AE admission which meant received echo CTs etc right away now on the surgical waiting list
my late Mum lived all her 91 years with AF and had good quality of life till arthritis wreaked spinal damage and she received brilliant care over the years
you should be expected to receive the same level of care
time to start banging a drum and complain
maybe ring the BHF cardiac nurses here for great professional advice
Oh my goodness, thanks for this JessicaRed. Good luck with the planned surgery and well done your mum for living her life and setting us such an amazing example. I’m going to ring the BHF nurses this week and see if they can help with advice too
Thankyou, let us know how you get on ❤️
Hi I've just been diagnosed w atrial flutter I'm on beta blockers but my heart is still racing ,have you got treatment.
It took six months for my echocardiogram appointment. I wasn't told anything about it so it came as a surprise as did the emergency admission that followed!
GP totally uninterested.
That’s awful, on both counts. Are you okay?
Admitted to hospital on the day they did my echo, they told me I'd had a heart attack in the previous 7 days. No idea at all that I had and we took some time to conclude it was the night before the echo. Had PCI 5 days later with 2 stents. Further echo 3 days later and they, again, kept me in. 3 weeks later had AVR (bovine valve) and 1 x CABG (precautionary I'm told as they were in there). Went into AF twice immediately post-op but that was dealt with by using medication which continued to about 10 weeks post op. Discharged 6 days after the procedure. I cannot fault my local hospital cardiac unit or the guys and gals at Royal Papworth, they are fantastic.
I'm now 17 weeks post op, did my 5th Parkrun (in the whole of my life) today, only did my first one on 16th September (exactly 3 months post surgery). Cardiac rehab staff and GP can't believe how well I've recovered, I've totally blown the suggestion in hospital that I'd only get back to 75-90% of my pre-op fitness level as I'm back to, at least, where I was a few years ago and a great deal fitter than pre-op condition!
The only downside is I'm still on a number of medications, some for life, and the blood thinners (until next year) mean I'm very prone to some quite nasty, extremely painful bruises, the worst one resulting from a blood sample at the GP surgery a couple of weeks ago, it still hurts a lot at times. Mentally I've been really good almost all of the time with only a handful of days feeling miserable in the last fortnight but a lot more upbeat now. GP seems a bit more onside nowadays too ...
Overall I can say I feel better than I have done for about 5 or 6 years at least, I'm enjoying the gift of a second bite at living a good life.
Join benenden healthcare. Its about £12 a month, after 6 months (which will probably be quicker than nhs) you can get access to private diagnosis or treatments, providing the NHS waiting list is more than 3 weeks, just need a referral letter of gp. Best thing we ever did has saved mine and husbands life many times. You can join regardless of any pre existing conditions, unlike most health care schemes. I put my dad on benenden when he was 87. Still only ,£12 a month. Look in to it. x I don't work for them or anything, I just think it's a fantastic plan and don't understand why more people don't do it. My mum was paying £169 a month with axa healthcare and it was crap, she's passed away a few months ago and couldn't access their healthcare, terrible.
Hi, I think most lovely people above have answered your question. I went on bupa site cardiologist & found my cardiologist. Booked an appointment, Initial consultation & plan in place, echo previously to this but MRI, meds, cardio version ect. Now handed back to HF nurse who unfortunately has an 8 month waiting list so I'm working through British heart foundation fitness program ect. Hope that helps & good luck🤞
Yes, a patient in the UK with newly diagnosed AF with no known cause should be referred to a cardiologist. The National Institute for Health and Care Excellence (NICE) guidelines state that all patients with newly diagnosed AF should be referred to a cardiologist for assessment and management. This is because AF can be a complex condition with a variety of causes, and a cardiologist can help to determine the underlying cause of your AF and develop a treatment plan that is right for you.
I understand your frustration with the delays you have experienced in getting an echocardiogram and seeing a cardiologist. Unfortunately, the NHS is currently facing significant backlogs due to the COVID-19 pandemic. However, you should still be able to get an echocardiogram within a reasonable timeframe. The NICE guidelines state that an echocardiogram should be performed within 6 weeks of diagnosis for patients with newly diagnosed AF.
In the meantime, you should continue to see your GP for regular monitoring of your AF. Your GP can also help you to manage any side effects you are experiencing from your medication.
I would also recommend that you contact the cardiology rehab clinic and ask to speak to a cardiologist. You can explain your concerns about the delay in getting an echocardiogram and ask for their advice.
Here are some specific things you can do:
Contact your GP and ask for a referral to a cardiologist. Explain that you have been diagnosed with AF and that you are concerned about the delay in getting an echocardiogram.
Contact the cardiology rehab clinic and ask to speak to a cardiologist. Explain your concerns about the delay in getting an echocardiogram and ask for their advice.
Keep a record of your symptoms and any side effects you are experiencing from your medication. This will help your GP and cardiologist to manage your care.
I hope this information is helpful. Please let me know if you have any other questions.
A number of the reply’s have covered the points I would make. After recovering from a Atrial Flutter I developed AF which I was told was a possibility. After 3 nights of going to A& E after calling 111, once in an ambulance, they kept me in overnight and arranged for me to see a consultant. He changed my meds and prescribed Flecidene, he was prepared to then put me on his list but suggested that I saw the consultant who did my Flutter as I have private Heath via work
Had a PV ablation soon after, it just shows that the NHS have the right people but it’s luck to see one who will help
Hope you find one
Firstly you might be better off asking your questions on the Atrial Fibrillation forum .A lot of us are on both but you may get more replies on there.
Hi LifeBeginsAgain,
I had a very similar experience where I couldn't find anyone to help me with what I felt were increasingly troublesome Afib symptoms(at that point I was unconfirmed). Id been referred to my local hospital a couple of times for heart related issues but as I wasn't presenting symptoms at the time of the appointments they seemed uninterested in how I felt (I'm sure that isn't the case but its just how I felt at the time). So I joined this support group and that was the first step to getting somewhere. Initially, I followed advice on home heart monitoring and bought myself a Kardia 6 lead monitor which I used whenever I recognised my symptoms and every time the device indicated 'Potential Afib'. Once I had a stack of data I asked on the forum for Cardiologist/EP recommendation in the region i'm located in and once i'd found someone nearby who ran a private clinic I booked an appointment. A Week later I saw the Cardiologist and armed with my Kardia data and a diary i'd kept of symptoms, (time/duration etc) he confirmed my Afib, which was a huge weight off my mind as finally I knew what I was dealing with. Now I'm a huge advocate for the NHS but on occasion the system is just so overburdened that we don't always get seen as quickly as we'd like. Im a natural worrier and something heart related like this really got twisted top in my head and I needed to know for my own sanity that there was something wrong rather than me just thinking there was, so I chose to go down a more direct route to get some answers. It all boils down to how you feel about your condition and if you need answers now then maybe a private consultation will help you along your journey.
Whatever you choose, take care and we're all here to help and support.
Some similarities in my story LifeBeginsAgain, but I think I have fared slightly better than you. I had a very rare face to face appt with a gp last week - shortness of breath, cough. She found my pulse to be very erratic and sent me to hospital (combined assessment unit, CAU, slightly better than A&E). Ecg confirmed gp findings. A dr spoke to me and asked if I was aware I had paroxysmal afib. She said respiratory consultant had mentioned it in a letter about a year ago. Well no one told me and obviously it’s been asymptomatic , or I’ve been putting symptoms down to other things. I have been on Diltiazem for sinus tachycardia for past 2 years. I was kept in overnight and advised afib has now become permanent, so now on Edoxaban and higher doze Diltiazem. I have been referred to cardiology for further tests and consultant said “hopefully” get appts in next 3/4 weeks. We shall see ! Things do seem to happen a bit more quickly if you’ve been admitted to hospital. So sorry that you’ve been left floundering . It all adds to the stress of the diagnosis .
I was diagnosed with AF on my third ambulance A&E trip in 10 days. My GPs were less than helpful, and on subsequent paramedic visits I was always asked what my cardiologist said. My reply was that I didn't have one. I asked a GP about it, who told me paroxysmal AF was referred to cardio, permanent was managed by GP, and I was permanent, wasn't I? I said "Am I?" They arranged an ECG there and I was in NSR, as I knew I would be. I can only think that they read PAF ob the A&E discharge notes and just assumed it meant permanent, not thinking of persistent or paroxysmal.From then on it was an absolute farce, and the waiting times and delays would make a saint swear.
It took 9 months for an initial cardiology appointment, and a follow up should have been made for 3 months but actuallytook over 14 months.
The most useful thing I have done is to buy a 6 lead Kardia. When I had my follow up I had been told by 3 doctors I was also getting atrial flutter, this guy said no, it was still fibrillation, and he thought it was persistent if not permanent. I knew it wasn't, but everytime I have a medical appointnent & they do an ECG it shows AF, probably because I SO don't want to be there.
My Kardia has clearly shown that I am in NSR most of the time, I still have episodes of AF, but I also get episodes of something else going on which had always been the case but they haven't looked further than AF.
It would be worth having a private consultation but try to see someone who has an NHS list, who could then perhaps refer you for tests on the NHS although the waiting times vary on area.
HI. I am 69 and was diagnosed with paroxysmal AF about 10 years ago. When I went to my GP after the first night of being woken up with a jumping, pounding heart and feeling sick, my GP said not to worry, it wouldn't kill me but if it happened again, go straight to A&E or call an ambulance. She referred to me to another GP with cardiology specialist interest and I had several appointments including an ECG and an echocardiogram. Nothing showed and in the meantime, I went to A&E another few times where they gave me an increase in the BP med I was already taking ie Diltiazem and warfarin. When the specialist GP could find no reason for the AF other than stress and I was still getting episodes, I was referred to a cardiologist at the hospital. He carried out yet more tests, nuclear medicine test which suggested I had had a minor heart attack and had ischaemia. This was followed by an angiogram which showed that in fact I had neither and nothing seemed to be wrong. My heart was working normally with no abnormalities. My cardiologist (EP) then prescribed Flecainide as a pill in the pocket and my episodes became about 9 months to a year apart. Over the years, I've been seen once a year at the hospital and was told that all the while I was taking Flecainide, I would be kept on their books. Unfortunately, as they originally told me, the episodes became more frequent to the point that 2 years ago, I was having them weekly. I then asked to go on the waiting list for ablation which I had in August this year. Since then, apart from one episode the day after, I have been OK. I am very surprised that so many people on here are not referred straight to cardiology because, although not life-threatening, continuous fast heart rates can lead to heart failure so something needs to be done, even if only medication including a blood thinner or anticoagulant. Stamp your feet. Having said that, my arrhythmia nurses have been brilliant and very helpful but they do need to refer to the consultant EP regarding certain meds etc. Hope you get seen quickly and given the tests required to at least rule out any physiological reason for the AF.
You’re not alone “life begins again”. I am experiencing the same .
long response I’m afraid
After a year and a month of waiting., I have a cardiologist telephone appointment in the 28th October I had the ECG S numerous times since September 2022 two echo scans and the gentleman told me I have a Atrial Fibrillation. But my doctor and the hospital have not given any medication prescription since 2020 Yes, 2020 and won’t until the cardiologist has spoken to me. In the mean time I have every fifth heart beat missing, water retention which is causing a concern with my weight. I did contact the local cardiologist department to ask for an update in August and mentioned I was thinking of going private . That very week after the phone call a letter arrived informing me of the appointment in October.
Unfortunately it’s the way of the world and I am in pain with it at times which I immediately attend A and E Fluttering. Out of breath Life changing. So my advice is to keep asking for updates from your doctors.
Up until last year the cardiologist department was stating it was my lungs and the respiratory clinic was stating it was my heart The going back and forward between departments been a roller coaster until finally the respiratory clinic wrote to the cardiologist department and told them to discuss my medical requirements with them directly rather than letters since they have non access to my notes in their system (Each department is on an separate work path and so not all the notes are in one place Witnessed this on my last visit and asked about it since it’s my field It’s appalling how many individual databases they have to open but that’s another matter )
Just as a side note which I thought was hilarious and have pointed out to three people in the Cardiologisr department but to no avail or maintenance note been raised …..When I was measured for height in the cardiologist department. I was registered as 5 ‘6 or 5’4 which I informed them was wrong since my height is 5’8 in accordance with all the other departments I inspected the height measuring equipment which is attached to the wall and informed them that the height sticks have been attached to the wall above the skirting board. So the skirting board is the first 2 to 3 inches and the measuring stick begins at zero. Nothings been done about it and it’s still the same after a year or two of visits. It’s very clear on visual inspection that this is incorrect but they carry on writing their measurement on the paperwork. Unique 👏
This sounds unsatisfactory to me. The most important medication you should be on is an anticoagulant because of stroke risk. You should be referred to a Cardiologist immediately if you are newly diagnosed. Your doctor can ask for an urgent appointment, so l would go back and see him. Yes, an echocardiogram should be done to see if there is anything going on with the heart to cause AF. You need to be firm and not be fobbed off. It is very worrying for you. Go to A/E if you feel unwell and tell them you are not being attended too. Hopefully that should get things moving for you because they get in touch with the Doctor.
Hi LifeBegins Again, I was diagnosed totally out of the blue. Felt bit dizzy once, felt out of breath a few times, when exercising or running upstairs in a way I never do as I am a fit person always exercising and on the go. I went to the GP and was diagnosed with paroxysmal AF . GP had no pads for ECG, booked me in for ECG in 5/7. I thought no way and went to A&E . They did ECG(which at that time showed AF) took blood tests and eventually sent me home with Edoxaban😥They referred me for Echocardiogram which I had within 2 weeks. No AF at that time. Hard to get referral to Cardiologist through GP, so I saw one privately and now I'm on his nhs list (min 6/12), but might see him or a colleague privately as I have a lot of questions.
Ring British heart foundation (you speak to a heart nurse)and/or atrial fibrillation association and ask questions. I'm 58, worked hard all my life with family and children now ready to travel the world and this happens.
The Atrial Fibrillation Forum is a good place to post on this. They have a list of Electrophysiologists. Though there are many other good ones who aren't on it. If you check for your nearest private hospital and look on their website for an arrhythmia specialist you will find an EP that way. When my AF became persistent - ie didn't stop - my GP prescribed Bisoprolol and anticoagulation medication. I was referred to an Electrophysiologist- with a 12 week wait.
In that waiting time I became really anxious because my heart rate shot up if I even walked up a hill or an incline. So in a moment of panic with a high heart rate about 180, I went to A&E. They were great and put me on a Magnesium drip and gave extra beta blockers and monitored me till the Heart Rate went down to 100.
AND BEST OF ALL they referred me to the arrhythmia clinic a few days later. There I met the amazing Arrhythmia Nurse who explained everything and arranged lots of tests, ECG, Echo, XRay, and 24 hr Holter Monitor etc and gave lots of advice.
So when I finally got to see the EP all the test results were there and he put me on the list for a Cardioversion and an Ablation and arranged a Doputamine Stress test to check for Ischaemia. That was clear so it meant I could take the anti-arrhythmic drug Flecainide ( you can't take it if you have Ischaemia). That helped a lot.
So going to A&E and getting that referral saved a lot of time. If I had waited for the EP appointment the tests would have been done later.
Time is of the essence, because if the AF is persistent for more than 4-5 months, there's a risk the electrical pathways of the heart can "remodel" and the AF is harder to stop.
I hope that helps at this really difficult and scary time for you.
Hi LifeBeginsAgain, I was extremely symptomatic and went to emerg. ECG said atrial flutter/fibrillation. After IV rate controlled I was given a blood thinner right there with prescription before I left. Plus emerg doctor referred to a cardiologist which was a wait but worth it. My conversation with my GP while waiting was "not a big deal" his mother has it and she's "still alive". But the cardiologist conversation was to call especially if symptoms of fainting, short of breath or chest pain. And then refers to an EP. Big difference between both doctors perspectives on Afib that can be influenced by their training, clinical experience, patient load and exposure to not only the latest research but especially the latest guidelines.
It might be a good idea to contact your local Defibrillator Support Group (25 around the country) and tap into the wealth of relevant experience.
I used to get AF but by calling the `hotline`, I used to get attended within the hour.
Yea, I know the problems; my daughter`s a GP and son is a Consultant, and they don`t like it either.
The cardiologist here at The Freeman (Newcastle) put 50 of us on Amiodorone; I have Brugada Syndrone....erratic heart-beats, extra electric line in my heart, blah, blah. The AF stopped during the `trial`. 500 of us around the globe took part and it did us good.
Mind you, for MY part I go swimming every morning and the hospital knows it `cos it shows up on their machines.
Sooooo.....local Support group, bend a few ears and go to a meeting. At Wythenshawe we always had 2 Cardiologists attend for a Q & A session. Be lucky.
Ta-ra Chuck.
in my experience. GP,s know very little about AF. It has several variations. And is different for everyone. Stick with Hospital. 🤞
I had 3 ambulance trips to A&E in 10 days, arranged by 111, when they captured AF on an ECG. Sent home with a list of recommended meds. Further nasty episodes and paramedic calls later I asked one of the doctors at the practice about seeing a cardiologist as the paramedics always asked me what my cardiologist said and I hadn't been referred. GP said paroxysmal AF was referred to cardiologist but permanent was managed by GP, and on my discharge notes it said PAF,which GP took to mean permanent but actually means paroxysmal! I failed to see how they could have come to the conclusion of permanent AF based on 13 hours in A&E, but that's a different story.I would wholeheartedly recommend buying a Kardia, I bought the 6 lead, you have the information there and it's accepted by the medical profession.
It would help if patients that are newly diagnosed with AF were given information about how it may affect them, best ways of helping themselves, etc, but that doesn't happen.
In my area it's 4 to 6 months for a cardiology appointment, but your GP could send an advice and guidance request, mine did in the end and the cardiologist arranged for a 24 hr Holter monitor and an echo before I ever attended an appointment. You could see if you can fibd a good cardiologist/EP to see privately, perhaps one that could put you back on his NHS list for tests/treatment.
Morning
I’ve just read your post it is a worry when you’re unsure about your treatment
I’m in the similar position to you at the moment
I was diagnosed with AF after a check up and meeting with my gender specialist up to this point I had no idea at all
I take other meds one does cause palpitations and I thought and mentioned to my dr about this I was reassured to keep an eye on it and my dose was lowered unknown to me it was Risperidone that had caused AF
I have recently noticed I’m more tired than usual and get out of breath easier
Like you I need to know if I’m to be referred to a cardiologist
Il let you know as soon as I know
Take good care
Feel free to get in touch anytime
Lee
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