I am a 74 year old female in UK and this is my first post.
Question: Is there a ‘normal’ sequence of who you are seen by after GP Afib diagnosis and referral?
Question: Is there any criteria for an emergency
bump up the list?
ECG (heart all over the place) and blood test at GP surgery resulted in referral to heart failure team due to Afib. Was given print offs of the dangers of Afib and prescription for Rivaroxiban which I am not taking yet and yes, I am well aware of the high risk of stroke. Being a practical person I even had an emergency bag packed.
Found out four days ago that referral had not been received. Sheepish apology from practice secretary who assured me that they would be having a practice meeting and would let me know what went wrong. Naively expected a letter to see a cardiologist but no such luck.
I rang yesterday to ask how long it would take to be seen and would it be a cardiologist EP or arrhythmia nurse. Secretary didn’t know, but said the doctor who is head of the practice was very busy, but she would ask her to phone me. She didn’t. Secretary phoned back and said the referral had been received but it wasn’t possible to do an Electocardiogram (On reflection she could have meant/said Echocardiogram) if my heart rate was over 100. I queried if that was the highest, resting or average rate and offered my own 6 lead Kardia Reading (morning result was 159) Secretary said I should take Bisoprolol for a month to bring my heart rate down.
I must admit I lost it at that stage and more than strongly pointed out that as their negligence had already resulted in a four month delay they should be the ones to put it right. I asked for an EP referral. (Kardia readout 189 after that call) Again told head of practice would ring me, she didn’t. I must admit I was feeling really sorry for the poor secretary at this stage who had to ring again to ask me to come in for a longer chat with my GP on Monday.
I joined the forum in November and am amazed by the wealth of information, love and care. There is so much I could post about my Afib journey but although long, this first post is as brief as I can make it. Have a great weekend guys and thanks for reading.
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jenanco
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How are you feeling with your heart rate so high? If it's still averaging over 159 now I think I would be getting myself taken to A&E for some advice on reducing it. You could call the NHS 111 number and seek advice. They have often called an ambulance for me when my rate is really high and has been that way for a long time.
No wonder you are cross about your referral not being requested!
I know what a kind and caring person you are and really appreciate you reaching out to me with your advice and response. My heart rate goes from high to low and is all over the place. Kardia reading today was 155, but am feeling fine thanks. Will keep you posted 🤗
That is disgraceful 😡 I am 75 and at that rate I would definitely go to A&E - how are you feeling? I would be feeling very ill! If you have chest pain, breathlessness or dizziness you are entitled to call an ambulance but it sounds as though you are bearing up pretty well 😄
The 'normal sequence' is that GP prescribes rate drug such as Bisoprolol and an anticoagulant (that is the essential one!!) and if further advice is needed refers to Cardiologist who may prescribe rhythm drug and if that fails you may be put forward to an EP to consider ablation. However that is the NHS pathway, so can differ considerably.
It sounds as though you have PAF? as several months at that rate would be unbearable but if Persistent would account for the HF.
PS I forgot to say that should you need a cardioversion you can't have it unless you have been taking an anticoagulant for the required time, alternative is a rather unpleasant procedure called a TOE which involves putting a little camera down your throat to check there are no clots in your heart as any sudden intervention to stop your AF could result in the clot being dislodged, so safer to slow your HR gradually with Bisoprolol? Not medically trained but that seems logical to me.
Thank you so much for your reply and PS. You have reached out to so many people on this forum, so I understand your logic regarding anticoagulants etc and may well have to go down that road sooner or later. However I’m unfortunately up to my eyes in a situation of chronic stress with very little sleep (nothing to do with Afib) I need to be able to keep going and cannot take the risk of side effects of tiredness at this moment in time.
When I saw my GP in October I was light headed, dizzy, could hardly walk, was in a permanent state of shallow breathing and totally drained, burnt out and exhausted. The Afib diagnosis was a wake up call. I was overweight, eating junk food and drinking copious mugs of tea and coffee.
I went on a complete plant based way of eating - no meat, fish, dairy or processed food and I cut out all caffeine and sugar. I drink only water. In less than 2 months I lost nearly a stone and a half a without even being on a diet and I’ve now dropped two dress sizes. Last week I went on quite a challenging three and a half mile walk up hill and down dale, thankful I am able to breathe again.
Taking into consideration that the action of an anticoagulant is to avert the risk of stroke from blood clots and/or heart attack. As a qualified homeopath I have a choice of several remedies that can also minimise the risk of stroke and heart attack. This is where I am now on a day to day basis.
Tomorrow I see my GP and will hopefully get some answers as to why my referral wasn’t sent and how they intend to make me a priority. Fingers crossed 🤞 Will keep you posted!!! 😊
Some great advice so far. I’m not sure if there is such a thing as normal sequence or progression regarding treatment due to the variable nature of the condition. You already seem to be well informed using a Kardia etc which normally happens a bit further down the road. The first thing I would say is that NOT taking the Rivaroxaban is certainly NOT your best decision, particularly having been told of the very real risk of having a life changing stroke. Having a bag packed is a not an alternative most of us here would contemplate!
If you have persistent AF, ie you are in AF 24/7, very often it is recommended that you have a Cardioversion to see if you can be returned to sinus rhythm and if so, and you feel significantly better, that will suggest that you may be suitable for further treatment, such as an ablation. Generally this is arranged by a cardiologist which can take some time to see, even without surgery cock-ups. If possible, many see an EP/cardiologist privately but make it clear any treatment should be carried out by the NHS.
Private appointments normally cost less than £300 but tests such as an Echocardiogram are expensive so be careful. I suspect you have had an Electrocardiograph (ECG) which is normal practice for diagnosis.
Thank you FlapJack, have read several of your posts and found them to be really helpful and informative. I take on board all you have advised me and have already replied to Buffafly’s response explaining a little about my situation regarding anticoagulants. Incidentally my reference to having an emergency bag packed was only to illustrate that at the time of my diagnosis
I don't know if there is a 'normal' route through the system. I am convinced that if the whole process was speeded up and people were having cardioversions in days or weeks rather than months or years there would be fewer of us in persistent or permanent afib. When we are in afib the heart remodels itself, the wrong electrical path through the heart becomes more established, it is more difficult to shock back into sinus rhythm and also more likely to revert to afib. The financial cost of this must be huge. This is surely one area where spend to save might help patients and eventually result in lower overall costs to the NHS.
Back to the normal route through the system. I am nearly 67 and retired last year. I sense that as I get older I become more invisible to the NHS. I sadly think the answer for us boomers is to develop sharp elbows. If I were you I would be more assertive and demand your right to quicker and more effective treatment. I think you are being badly short changed and I know you are pushing against it but you might have to abandon good manners and push harder.
Agree with the principle of what you say but CV’s are only carried out on folk who are in AF. This makes it very difficult for those with Paroxysmal AF because AF rarely performs to order. The fact that patents must take anticoagulants regularly for four weeks prior to the CV might have a bearing to. That said, it would be much better to offer CV’s sooner than later........
Thanks Nybroc, your post reflects my sentiments exactly. I did suggest to the secretary that my un-submitted referral worked in their favour as given my age I was more likely to ‘pop my clogs’ if I had to start from square one. Fingers crossed for GP ‘chat’ tomorrow - I’m ready for the battle!!!
Hi Jenanco, I was sent by my GP to A&E when I suddenly developed rapid AF last April, not as fast as yours, and spent all day there (in the area marked Resuscitation!) while they found a dose of Bisoprolol (a beta blocker) that brought my heart rate down to below 90bpm. It sounds like negligence that your GP hasn't - the aim of medication is to bring the heart rate back down to normal (ideally, to less than 90 bpm when resting) and this hasn't been done. You should have been prescribed a rate control drug. I think I would take myself to A&E in your position. And do take your Rivaroxaban. It felt frightening at first to have to take it, but I have become quite blase about it now, it's just part of life and the lesser of 2 evils for me - having a stroke could be devastating. Good luck.
Hi, my GP when she found I had Afib and a rate of 166, called an ambulance there and then. I was admitted, drugs were sorted and a cardio version arranged. Now on waiting list for an ablation.
With a resting rate of 150 you should as a minimum call 111, who will most likely call an ambulance.
In my experience no one knows the effect our arrhythmia has on us and in truth it can be very varied. Some of my arrhythmia hardly affected me whilst Aflutter caused me to collapse and one time whilst wired to a monitor in A&E automatically activated the crash team when I stood up. Generally speaking the referral route goes GP to Cardiologist to EP.
The only advise I will give right now is if you have an abnormal heart rate for longer than an hour call 999. Now that will unlikely fix anything and you will have a long wait in A&E and perhaps the Docs seeing you will not understand your condition as you think they should. What it will do is record your visit and condition, after a few visits you will likely get a referral to an EP.
The Docs generally don't see our conditions as life threatening and also cannot fully understand it so they nearly always treat the symptoms to the best of their abilities, whilst they may appear a bit too casual, its just because they have limited options for our treatment. Yes many should refer to the Cardiologist sooner but their apparent casual attitude is driven in their belief that the condition is not life threatening.
In my opinion, whilst our condition is not life threatening in itself, if prolonged it can cause life threatening conditions (not just stroke). As our hearts were not designed to work in such a way for prolonged periods it could cause a muscular heart, valve abnormalities etc as well as potentially being detrimental to other parts of our bodies.
In preparation for your appointment have a look at Dr Gupta's videos on youtube, type "York cardiology" in the search box and pick the relevant videos for your condition, if you have time I would watch them all.
Most on here say ... you have to wait a long time in A + E. I’ve been three times since last August. Every time I go straight to the triage nurse I get all tests done had one with a chest X-ray bloods and a cup of tea. All the staff are amazing. Then a GP. Drug’s administered job done. All the others waiting give me dirty looks and tut as they can’t see the problem. One nurse gave me a cuddle. I never bother with 111 never return the call so I go myself to A + E. Helps if you can’t breathe.
Many thanks for sharing your experience. Tomorrow I see my GP regarding my un-referral. Depending on the outcome I may well have to work on laboured breathing tactics!!! 🥴
if you call 111, they will tell you to go to A&E and call you an ambulance. If they decide to admit you then getting the tests becomes easier. You will be seen by the cardiac team. I had a 3 month wait for a echo and after being admitted got it done in 1 day. Start taking the anti coagulant. Another route is to find an EP and pay to go private. I’ve just done that. My issue was a bit different due to an inaccurate referral letter led to me being regarded as routine so have at least 3 month wait. My private appointment is next Saturday with a Papworth EP and will cost me £355 which includes an ECG.
Nowadays you have to be proactive and work it out for yourself. Sounds like you have been assertive so really annoying that you have got nowhere.
Thank you so much for your info. So sorry about your referral mess up. Seeing GP tomorrow about my un-referral. Have looked up for a private EP in my neck of the woods and will book an appointment.
Definitely take your Rivaroxiban. I’ve been taking for a while with no side effects (if you are worried about that). Hope you get on top of your symptoms.
If all else fails start writing letters explaining how you are not satisfied with their response. If they are at all sensible they will realise that you are slowly but surely building a case against them
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