Diagnosis frustration

I've just turned 70 and I first felt an arrhythmia about 16 months ago, waking in the night to find my heartbeat racing and irregular. It passed but because there were a few more episodes over the next few months, I took myself along to my GP surgery for help.

Thence began one of the most frustrating periods of my life. The arrhythmia has continued episodically since then with fairly frequent periods in between of ectopic heartbeats.

An echo was performed on a day when I had no symptoms, and a 24 hour ECG monitor showed no more than ectopic beats and an unremarkable heart murmur.

I've had to consult with so many locums at my GP surgery that I don't know if I am coming or going. The attitudes towards my symptoms have ranged from sheer disbelief ("Oh I think you are just noticing your own heartbeats, or drinking too much coffee"), to some really good, caring locums who have tried to help but who, of course, I have never ever been able to consult again. At my last consultation with a young GP from my own surgery I was told that "of course you are at increased risk of stroke, because of your AGE". That didn't help or answer my question in the remotest way.

Compounding my woes is that services are completely overstretched and there are long periods waiting for a longer term ECG monitor and for results from tests to be made available. (Nearly three months for the result of my 24 hour monitor). I waited four months to be called for a 7 day ECG monitor, then to be called forward at 24 hours' notice, just as I was leaving for a holiday. I am now at the bottom of the waiting list again, having been re-referred.

I have been put on Bisoprolol as an interim measure and there are dark mutterings about adding in an anticoagulant, but of course a firm diagnosis is still needed. But how to get it?

What really frustrates me the most is that I have tried to help myself. I bought one of the small ECG/heart rate monitors available now, took readings and did print-outs only to have this poo-pooed at my surgery as "useless". I understand it's not as scientific as a proper heart trace, but surely it could at least be used as evidence that something untoward is going on.

By comparison, my sister who borrowed my gadget to help diagnose her bradycardia, got an enthusiastic response from her GP who used the read-out to change her drug regime. And in Hampshire, there is a roll-out of these devices to some patients suffering episodically, the same as me, to help diagnoses. So why the scorn?

I actually give up now.

I'm fed up with this merry-go-round that leads nowhere. Am I at heightened risk of stroke, or am I not, and if I am, please someone, help me. I have a little bit of family history in that my dad died of AF, but that was many, many years ago. Medicine has moved on in leaps and bounds since then, but I just don't have a clue how to move things forward for me any more, and can see no alternative to just putting up with this and hoping for the best.

[meadfoot]

Can you afford to have a private initial consultation with an EP, an electro physiologist who is a cardiologist specialising in the electrics of the heart. If so please ask your GP to refer you to one. After initial consultation the medic would transfer you to the NHS for tests, tratment etc if you ask them too. There is a list on the af website of good EP medics. I don't know where you live but hopefully there will be someone good in or around your area. If you can't afford a private consultation insist your gp refers your to an EP on the NHS for a proper diagnosis.

An EP will give you a thorough heart health overall and decide on a treatment regime including anticoagulation to lessen stroke risk if you meet the criteria for such treatment.

Please don't continue being messed around because your GP surgery is staffed by so many locums and your consultations are so varied in their response. Take the bull by the horns and take control or you will be messed around indefinitely at this rate. Best wishes.

[Hidden in reply to meadfoot]

Thanks so much meadfoot. I'm seeing the trend here towards the need to just make myself pay up and move this forward. Both you and IanMK have offered really helpful advice.

[IanMK]

Hi Callendersgal

You're getting a rough ride, there's no doubt but, in my opinion, it's largely a consequence of the 'Free at point of use' nature of the NHS.

I suspect that you should be on an anticoagulant - check online to find out how to get your CHADSVASC risk score.

NICE recognise the usefulness and validity of the Kardia ECG monitor and, as you say, some health authorities issue them to patients.

Unfortunately, AF comes and goes for some sufferers and it often goes at the most inopportune times. I don't know where you are, but I understand from posts on here that understanding of AF can be variable in different parts of the country. If you are able to research online for a good NHS cardiology unit with good electrophysiologists and you are able to visit there then I would recommend asking your GP for a referral. Trust me - I understand how difficult it is to get a GP appointment but don't give up whatever you do and be assertive in asking for a referral. As you say, medicine has advanced in leaps and bounds and there may be a routine and pain-free procedure to help you.

I hope this helps.

All the very best.

Ian

[Hidden]

Hi Callendersgal,

I agree to greater and lesser degrees with the other posts. However, my experiences with the NHS have ranged from bloody brilliant, down the line to, 'Not fit for purpose'. The most brilliant was in Surrey when I was diagnosed with AF in 9 hours from onset and treatment started immediately. The next most brilliant was a successful knee replacement ( in Cornwall, as an NHS patient in a private hospital).

The two worst (also in Cornwall) have been related to the use of my Coaguchek XS INR testing device where I found the surgery and the local CCG totally obstructive and in the end I found myself another surgery in my area who totally supported patients in their use of this device. I might add the result of my own efforts with absolutely no help or advice from the CCG). The other, more recently was getting cataract surgery. The local Hospital Trust were so obstructive, full of lies and deceit that in the end I made a formal complaint about the Hospital Trust to my MP, and although, that sorted things and I have now had surgery I still haven't finished with that Hospital Trust.

My point being is that at some time you have to consider your medical/healthcare needs in the years ahead and if necessary be prepared to put the effort into to fighting for what is rightfully yours and do as Americans say ........ you just gotta go kick ass !

So, what this miserable, grumpy old git would do is to find myself another medical practice in the area where you live and move to a new practice.

I would also make a formal complaint to your MP ( copying in the Practice Manager at your existing current surgery).

At a more realistic level do follow up and get an online risk assessment using the CHADSVASC scoring process. If any doubts here get onto the AFA website, although I haven't used the search facilities I think they also have a reference to Cardiologists and EP's who maybe close to where you live. EP's are the go, no doubt there. These are the electricians of the heart - for the most part arrythmias are an electrical issue.

May the force be with you.

John

[Hidden in reply to Hidden]

Thanks for your support and advice carneuny.

[Dodie117]

I found this stage very frustrating also. Complain to everyone. Make a nuisance of yourself as this may be the only way to get the proper treatment. If possible change to a new doctor and check they know about AF. I changed to a new surgery when they were messing about with anticoagulant. However, with perseverance you will get there. I had an ablation in 2013 and This sorted my AF. I know it may return but for now I am back to normal.

Good luck 🍀

[Hidden]

Thanks for that lallym. It’s good to hear that you eventually got through!

[Buffafly]

The problem is that I don't think you should be prescribed an anticoagulant on the basis of a Kardia(?) recording and your symptoms are not severe enough to warrant an urgent investigation by means of a long-term monitor. If you see an EP he will still need proof that you have AF and a private monitor may be expensive - I don't know how much. Changing surgery won't make any difference to that, sadly. As an anticoagulant has been mentioned I should definitely pursue that to see if you can be prescribed it for safety's sake while waiting for the monitor.

It is very frustrating that so many GPs are ignorant of personal rhythm monitors. I have had scorn from two and intense interest from one while my cardiologists and EP took my recordings very seriously.

Best wishes, you will get there in the end so don't give up.

[Hidden in reply to Buffafly]

Thanks so much for your encouragement Buffafly and I echo all that you say about GPs and personal rhythm monitors.

[netie54]

Go privately if you can.

[Hidden in reply to netie54]

Thanks netie54. There's certainly a great deal of merit in taking that route, I think.

[IanMK]

I have some sympathy with GP practices in general. Unfortunately, the 'System' has brought us to where we are now with immense difficulty arranging a consultation with a GP of our choice. There are clearly considerable pressures on the service and on the profession. Consultations are limited to 10 minutes, many GPs prefer the benefits of being a locum and apparently there is little opportunity for them to follow any specialisms or personal medical interests. This is not to excuse those GPs who are inconsiderate or treat their clients in an off-hand manner. Looking at other industries and professions, however, increased demands and pressures appears to be common factors these days.