Since my diagnosis in 2019 I have been taking medication for this condition, but every year in May my heart has gone into arrhythmia in May, each time my dose of Bisoprolol has been increased from 1.25mg in 2019 to 5mg currently. This year however the symptoms are only partially under control. My GP referred me to the arrhythmia clinic who immediately discharged me because they said I had not had an ECG since 2020, which is in fact incorrect as I had an echocardiogram in 2021 and an ECG in 2022. They will not consider seeing me until after I have had a heart monitor for five days and the earliest appointment for that is 31 August 2023. I did have an ECG yesterday, but my heart was not in AF at the time, so I have a negative result. I really cannot wait that long for the heart monitor.
I have contacted my surgery again and told them that if they are unable to secure me an appointment with the arrhythmia clinic within the next two weeks I wish to be referred to a private cardiologist and they have not responded. I feel that I am running round in ever decreasing circles and becoming increasingly frustrated and scared.
If anyone can give me some advice on what I should do I will be grateful.
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DoggieMum
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Sorry you're going through all of this ,speaking from my own experience you don't need a referral from a gp to see a consultant cardiologist privately, you can just pick who you want to see & make an appointment ,hope you get sorted quickly
Thanks for that and I am aware of that but last year I was frustrated because I couldn't get an appointment for a dementia diagnosis for my husband, went privately off our own bat and, when I went back to the NHS, it caused so much confusion and delay, that he is not having a full NHS assessment until later this month. Everything is so frustrating these days
I know what you mean , I've had to go to the private sector repeatedly over the last 5 years ,one thing I did learn was to get copies of written reports, scans or any tests on disc to give to nhs Dr's when those appointments do eventually arrive ,it's a nightmare!
I’m sorry to hear you’re experiencing worrying symptoms.
I can sympathise with not being able to catch your AF on an ECG. I have a condition called vasospastic angina, and when I’ve had these episodes previously, they have not been caught on an ECG. They can be incredibly difficult to be seen or recorded on an ECG if I’m not having an episode at that moment in time.
In terms of private care, I have personal experience of this and I have almost always needed a referral letter from my GP before seeing a cardiologist privately.
I had a 14 day ecg recently - but wasn't a holter monitor, it was like a patch that I wore. I think it was called Zio... in any case, you wouldn't need to wait on a holter monitor becoming available as it's a single use thing.
Not sure of the availability on the NHS as I got this in the private sector.
On the NHS website look up Your Right to Choose. There's a section that refers to this. Your GP / cardiologist must refer you and the NHS must pay if they say you need to have this investigation. The NHS is in an awful mess. There must be a way of complaint you can follow if they ignore your request.
Sorry to read about your frustration and delays. Going private for initial diagnosis and then opting back into NHS for treatment was the option I chose.
If you suffer from Arrythmia it’s worth considering seeing an electro physiologist (EP) who are specialist cardiologists dealing specifically with electrical heart disorders.
The other advice I would give is to take a look at the AF Association pages on this site where there is both helpful information and useful posts from fellow sufferers.
I was fortunate and had superb care from the Arrythmia team here in Oxford and after two ablations am now largely symptom free. I hope that you can get similar care and the same result.
hi doggiemum, have a look for a little gadget called a Kardia. Size of credit card, it takes home ecg! You use it with your phone and an app. It records and saves the ecg. They also have online cardiologists looking at the reports if you wish and advising. Build up your case and go and seE consultant with the evidence taken when you have an episode at home! The gadget is super accurate and reliable. Get the six lead gadget if you can afford it - around £150. (On Amazon)
In 2016 I was just having long episodes of palpitations, I’d had a them for over 30 years but not for as long & was on bisoprolol 5g for ectopic heartbeats. The waiting list to see a consultant was months. We belong to Benenden. I had to get an nhs referral but I was seen within a month, the cause was investigated & I needed an AVR as I had a bicuspid valve which was becoming blocked. I was then referred by Benenden to Kings. Benenden did all the tests needed for the operation & I had it in Kings early 2017. I’m now under a local nhs consultant for monitoring having an ECHO bi yearly to check.
if you can get to Benenden hospital Kent I find that’s better than going to a more local Benenden referred one. They seem to do more in Kent. They don’t to heart ops there but I asked the consultant who he would use & he sent the request for appointment to Prof Olaf Wendler who was the surgeon who did my opp & head of department. I had all my tests at Benenden before hand. Good luck let us know how you get on.
I understand exactly where you're coming from. My GP told me I was lucky to be under the care of a cardiologist, but I've only seen him once at the end of May last year, my follow up appointment was supposed to be in 3 months but was eventually scheduled for 7th June 2023, even after a letter from my GP asking for me to be seen as a matter of urgency, and has now been postponed to 19th July. I can't get answers to voicemails or emails to his secretary so get annoyed when the GP says "Ask the cardiologist."After the postponement I asked the GP if I could have a holter monitor for a few days, basically because things have changed, but no, ask the cardiologist.
I had considered buying a Kardia, as I thought it was pointless accumulating information that I was powerless to pass on to anyone.
I understand your frustrations.Back at the beginning of my switch to Persistent AFib 2 years ago I paid to have a private echo as it was a 3 months wait.I found where I wanted to go and asked the Gp to do a referral.You could start with private monitor.Speak to the Arrhythmia Nurses and firstly ask if this would help or is there a choice of hospitals to pick up the monitor.Ask nicely even if you are fuming inside.They don't have an easy job.I picked up on you saying you are scared.What scares you? Maybe if you could remove or lessen the fear your journey could be easier.
Sorry about your problems. my problem is a similar one. been taking medication for some years but not always working theses days. If the GPs ecg shows no fibrillation it's good bye to me! We don't appear to have a special arrhythmia clinic here. So in desperation I had bought the basic kardiamobile device and I have managed to catch several arrhythmia episodes, took them to show GP now have an appointment later in June at hospital to have some sort of check. I know it is worrying for you and hope it soon gets sorted. Mine is not the ideal answer but feel need to do something. good luck
Sorry to hear your frustration. The good news for you is that they mustn't consider your condition life threatening. I had a very scary episode of atrial flutter (different to AF) in December 21. After 3 months of hearing nothing I had a private consultation which reassured me. For your own peace of mind you need to arrange a private consultation.
I went to see a consultant without any referral - they don't seem to need one if you are paying. He works for the NHS and so it's all seamless. He is the one 'in charge' and lets my GP know of any changes to meds and the results of occasional scans he arranges. He also arranges scans when needed through the NHS.
In my case its £150/visit and I go around twice a year now everything is under control. Having easy and rapid access to a consultant has greatly reduced my stress.
I was diagnosed with AF in November 19 when at work, I had it for 22 hrs then it corrected itself with meds being flexanide and bisopropol. I never ever had a monitor and have had 2 ablations one being cryo that had to be stopped due to damage to the phrenic nerve. The second a year later was heat and this seems to have been successful but its early days being 21 and I have had one episode 10 days after which apparently is normal. I would suggest talking to the arrhythmia nurse and insist they try to get you put on the list for ablation. It is upsetting and stressful but hopefully in time you will have it sorted and can get back to a normal life. All the best with it.🙂
hi there, i'm glad to see that others have offered suggestions for you to consider - it's so hard to get the right attention these days, thank goodness we have resources like this to turn to
Taking a step back, have you ever wondered why this seems to happen in May? is there something that changes in your routine around then? it might coincide with the beginning of the pollen season and, while you might not be showing symptoms of hay fever, you might be sensitive to specific pollens???? or something else??? give it some thought because prevention is always more helpful that treating a problem
It seems to be that the Bisoprolol needs to be increased every year, plus my birthday is in May and that is probably why I remember, It's certainly not because I am excited!!🙂
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