Identifying the undiagnosed person - Atrial Fibrillati...

Atrial Fibrillation Support

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Identifying the undiagnosed person

SamAdmin profile image
SamAdminAdministratorArrhythmia AllianceAF Association
21 Replies

Nearly 500,000 people in the UK have undiagnosed AF (atrial fibrillation; the most common arrhythmia) Currently there is no national screening of pulse checks, it is important to check and monitor your pulse regularly:

Know Your Pulse to Know Your Heart Rhythm - It could save your life!

For more information, please download our booklet ’Identifying the undiagnosed person’

UK: Arrhythmia Alliance Patient Resources - Arrhythmia Alliance - UK (heartrhythmalliance.org)

US: A-A IDENTIFYING THE UNDIAGNOSED PERSON Booklet.indd (heartrhythmalliance.org)

If you have any questions, then please do not hesitate to contact the Patient Services team on +44 1789 867501 or contact us below:

UK: Contact - Arrhythmia Alliance - UK (heartrhythmalliance.org)

US: Contact - Arrhythmia Alliance - US (heartrhythmalliance.org)

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SamAdmin profile image
SamAdmin
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21 Replies
Cavalierrubie profile image
Cavalierrubie

Thank you Sam. There does need to be more awareness of this condition. It is so difficult to catch and diagnose. Looking back, l had it for quite a while before it was diagnosed and l am always grateful that it was picked up by a good Paramedic. I think the best part of the body to feel your pulse is in the neck, as any irregular rhythms are stronger in the neck. Good work that you are doing.

SamAdmin profile image
SamAdminAdministratorArrhythmia AllianceAF Association in reply to Cavalierrubie

Thanks Cavalierrubie for your comment.

Billblue profile image
Billblue

Sam what is the best way of checking your own heart rate I have a Omron but is this accurate

SamAdmin profile image
SamAdminAdministratorArrhythmia AllianceAF Association in reply to Billblue

Thank you for your comment, please see a link below of the best way to check your pulse

api.heartrhythmalliance.org...

Kind regards

SamAdmin

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Tapanac profile image
Tapanac

thank you

john-boy-92 profile image
john-boy-92

Primary Care will tell you that they don't screen for undiagnosed AF, as they are waiting for the full report from the SAFER study by Cambridge University. To add to that, all the participants in that study are over 70 years of age. I have to say that my nagging of the local Practice to use a waveform oximeter has worked, at least for me. That was in spite of one GP telling me back in the day, that an article in the BMJ had recommended that doctors didn't scan for AF. I've been lucky to discuss this in an email with Trudie Lobban, and be in an AFFIRMO study Zoom forum chaired by Trudie.

Why is screening for AF important? My stroke in 2016 was associated with AF. One consequence of the stroke was the grand-sounding homonymous hemianopia. Not a character from a Greek myth, but sight impairment that meant my driving licence was no more.

Screening for undiagnosed AF is so important, but is a poor relation to so much else. As Basil Fawlty would say: 'we have to kick bottom!' More strength to your arm Trudie and Health Unlocked.

108cat profile image
108cat in reply to john-boy-92

Yes it really does have a touch of Fawlty Towers about it.

I hadn't heard of the Cambridge SAFER research project, thank you. It looks very comprehensive and it's good to see something like this is happening. However it doesn't conclude until 2028. Why would we not screen until then?

It's madness, it makes less than no sense.

Yes screening is so important, every minute counts for someone somewhere ..

I've been putting a proposal together for my local GP surgery (as mentioned below in my response to Sam) to suggest they use Kardia to detect PAF to screen for asymptomatics.

Wish me luck!

john-boy-92 profile image
john-boy-92 in reply to 108cat

It doesn't need a Kardia. A wave form oximeter - around £30 retail from Amazon - does the job.

108cat profile image
108cat in reply to john-boy-92

Thanks I hadn't heard of this, does it give an ECG reading and actually define AF or 'possible AF' as Kardia does? How does it show AF?

I have an oximeter - a beuer ...

john-boy-92 profile image
john-boy-92 in reply to 108cat

It has a waveform display that shows the pulsed blood flow. It doesn't define AF but an irregular pulse can be clearly seen. It's a much simpler version of the Pleth display that you see on a hospital blood pressure / pulse / SpO2 monitor.

108cat profile image
108cat in reply to john-boy-92

Thank you for explaining, in an ideal world I'm sure that should be enough but since COVID my GPs don't seem to have time to think. The advantage Kardia might offer is that along with 'possible Atrial Fibrillation' it captures a reading that can be forwarded to a cardiologist so the GP doesn't have to do much ..

john-boy-92 profile image
john-boy-92 in reply to 108cat

The ten-minute appointment was something brought up by the BMA. I recall that it ended a few years ago but it has lived on. That was before GPs worked three days a week.

For years, I've been able to say that I have a slightly delayed P wave. Some clinicians will say that I have first degree heart block. That was known before the stroke, but didn't change anything.

If there is the possibility of AF, then it needs to be checked out properly. From my experience back in running days, a Bruce Protocol test is good for exercise triggered AF. That showed I flip-flop between fibrillation and flutter during cardio exercise. What happens beyond that is critical. I was prescribed rate control rather than an anticoagulant. As I've mentioned many times here, that medication scarred my lungs.

john-boy-92 profile image
john-boy-92 in reply to 108cat

The problem with the SAFER study is that all the participants are over 70. It's probably two decades ago, that an Olympic team of cross-country skiers were found to have AF around twice the level of the population. Yet there is still a belief that AF and strokes are confined to the elderly.

I have the privilege of talking to second or third-year medical students about stroke and AF, so I have a forum to raise this. I also participate in online lived-experience fora by the Stroke Association and studies by several UK Universities. Through those, I know that stroke and AF can affect people in their 30s.

Then again, clopidogrel is prescribed for people who've had a heart attack, or a stroke that is not related to AF. Yet around 30% of the white population and, up to 60% of some non-white populations have one or more variants of the enzyme that metabolises clopidogrel. Those variants vary the speed at which the drug acts, from very slow to ultra-rapid, requiring a change in dose. However, we don't routinely test for those variants before prescribing. I should add that this enzyme also metabolises Diazepam. SSRIs, and Omprazol.

108cat profile image
108cat in reply to john-boy-92

It sounds like you're doing really great advocacy for AF, that's a wonderful thing.

Absolutely mad that people don't get anticoagulant because they're a year or two too young for the regulations ..

Not sure about clopidogrol and how it relates, I'm probably being dense.

john-boy-92 profile image
john-boy-92 in reply to 108cat

I'm using clopidogrel as a metaphor for the things that are not done in medicine but are known to require action. A study specific to the clopidogrel metabolising enzyme CYP2C19 was carried out by Bristol University on behalf of NICE. The test for the variants is at minimal cost, so why isn't it routine to be effective and possibly save money?

108cat profile image
108cat in reply to john-boy-92

Yes sorry I see now. Exactly the problem with screening for AF. I may be wrong but even on The Stroke Association, The Heart Foundation, they talk about the undiagnosed asymptomatic 500,00 but I don't see much energy going into prevention, it's mostly coping after the fact ... of course for those who have been affected that's vital but for those who haven't yet been affected and don't realise they are at risk it's equally important. And when it comes to having a stroke or not there's no question that not having a stroke will cost a lot less whatever way you look at it ...

thank you you've been very helpful to me ..

john-boy-92 profile image
john-boy-92 in reply to 108cat

As I mentioned, I've no idea why Primary Care are resistant to AF screening. My talks to medical students are in a local Practice with a GP as the moderator. When I talked about wave form oximeters as a quick, informal check during an appointment, the GP agreed (much to my surprise). On a visit to the same Practice this year, I was checked with a wave form oximeter on each hand by a different GP. The Atrial Fibrillation Association organise know your pulse days that are staffed by volunteers.

The NHS images in my local Practice waiting area say reduce your risk of stroke by cutting down on drinking, smoking, and eating the 'wrong' food. There isn't a mention of checking for AF. Don't get me started on FAST as an indicator for stroke.

Back in the day I was a patient representative for a NICE Patient Decision Aid (PDA) about anticoagulants. I remember talking to some great clinicians, but here we are without that PDA. We know the issues; there are inexpensive ways to prevent future problems, yet the solutions run into the buffers.

108cat profile image
108cat in reply to john-boy-92

Yes it's completely maddening, I'm actually writing up my Kardia proposal for the GP as a way to hopefully exorcise my own annoyance with the shambolic way I was treated.

It's absolutely crazy that so many are unknowingly at risk of stroke and yet as you say, the means of detecting AF and protecting with anticoagulants are inexpensive and readily available. Who could give a rational explanation for that?

I was blown away when after 8 months of no answers, a private consultant took one look at the Kardia reading on my phone and gave me a diagnosis. So simple, so fast ..

So great that you managed to get your local GP to do something about it, that really is good.

I think I'd better meditate and calm down now ...

108cat profile image
108cat

Hi Sam,

Yes this is so important, thank you. I am currently writing up a proposal for my GP to suggest they use Kardia to screen for asymptomatics, and to speed up the diagnosis of PAF. As a sweetener, I may offer one or two Kardias to the surgery.

I don't understand why this technology isn't used more. It's approved by NICE, it's accurate, easy to use, relatively inexpensive etc. I worked out that the NHS wasted about £2.5k on me over 7 months last year in NOT FINDING a diagnosis of PAF. So I went private and the consultant was able to diagnose using Kardia within a few weeks.

Of course the thing is while I can just about afford a private consultation, many people can't.

I'm wondering if you know whether there's something about Kardia (or similar mobile tech) that makes it difficult for GPs to use? If you do I would be grateful if you could let me know what that might be. Perhaps the company needs to make improvements so that it works better for GPs?

I do know that NICE prefers 12 lead for diagnosis, however if AF can be 'detected' quickly and accurately by Kardia it's a good start, and most Cardiologists seem to accept Kardia.

Thanks again and best wishes ...

john-boy-92 profile image
john-boy-92 in reply to 108cat

There is resistance by GPs to screening for AF. I've don't understand why. In my case, an EP denied that I had AF and said an anticoagulant was unnecessary: eighteen months later a stroke disproved that. It's our life that it affects, not theirs. When I end up in A&E - not because of AF - they attach a five lead and declare, do you know that you have atrial flutter (hmm!)? Then it will be a Troponin test.

108cat profile image
108cat in reply to john-boy-92

Yes this interests me, why would they not go for it. Just from the economic point of view it would be beneficial, let alone the suffering caused by strokes ..

As I said previously if my GP had Kardia it would have saved me months of anxiety (terror) and saved the local NHS services a lot of money ... instead the GP was convinced I was simply an 'anxious old lady' tried to prescribe anxiety medicine, and CBT therapy .. I couldn't get him out of that groove. When I insisted on a referral to private cardiology he said 'you'll be going down a rabbit hole, they'll say the same thing'... Two weeks later I had a PAF diagnosis.

So annoying, at least you're a boy you have that going for you!

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