Charity concerned that new NICE guide... - Atrial Fibrillati...

Atrial Fibrillation Support

32,304 members38,577 posts

Charity concerned that new NICE guideline published today will delay diagnosis of AF

TracyAdmin profile image
TracyAdminPartner
24 Replies

Today the National Institute for Health and Care Excellence (NICE) published their new NICE AF guideline.

Whilst the AF Association welcomes their focus on providing personalised care for AF patients, there is concern over the requirement of a 12-lead ECG for diagnosis as this may lead to a delay in diagnosis.

Read more on our website: heartrhythmalliance.org/afa...

Written by
TracyAdmin profile image
TracyAdmin
Partner
To view profiles and participate in discussions please or .
Read more about...
24 Replies
Physalis profile image
Physalis

Yes, I agree total nonsense. A simple one lead ECG enabled my doctor to say it was AF. Beats were irregular and fast.

in reply toPhysalis

Or those two finger phone app thingies kardia? They seem to be very effective and a gp could have a few in his drawer to bring home with you for a while. They're not even expensive really ..why use something expensive when something cheap will do the job better?

Physalis profile image
Physalis in reply to

I think we've established recently that the Kardia operates in exactly the same way as the watch does. With the Kardia, you put two fingers on the electrodes and the signal passes across the body. The watch is the same in that it takes the signal from your right arm and passes it through to the left wrist.

I've also become aware recently that the series 4 Apple watch, which has the ECG, can be got for about £60 from ebay. This is probably because a lot of young people are upgrading.

And I've had my watch for a couple of years now. For me it's been worth every penny.

in reply toPhysalis

That's fantastic. I never got a diagnosis so it would be great to not have to go to a hospotla miles away to pivk up a complicated machine that knowing me I'd knock one of the electrodes off in my sleep. My mom had a hakter and she spent the whole day cursing at it and it read about four readings before it went mad on her lol! Do you know which version I phone it is? I have two old ones here myself just storing photos.

Physalis profile image
Physalis in reply to

It's the series 4 one which came out in 2018. I bought it in May 2019 for the fall detect feature. I'm glad to say I haven't had a fall since!

in reply toPhysalis

Oh my god it has a fall detect feature!!??? For people like my aunt who has osteoporosis and might fall and break her hip? I'm going to look that up immediately ..I must be living under a rock not to know about all the new tech!

in reply to

....... and that is exactly what happens to me when my GP gets me fitted with a holter monitor. Due to pretty wild shoulder pain at night, even with pain killers, my sleep is both disturbed in terms of waking up, but is also a walk on the wild side as when I do drop off I thrash around like you wouldn't believe. Result, one or more leads come off. Result - limited information for the medics to work from. Waste of time and money !

Singwell profile image
Singwell

Sometimes Gold Standard best practice is an obstacle to health care... one wonders who it benefits.

in reply toSingwell

You know exactly who benefits. Lol!

JudiHalf profile image
JudiHalf

It took me about 5 years to get diagnosed with AF, I managed to get an ECG done at my doctors surgery while having an AF episode, not sure if it was a 12 lead or not, it’s quite difficult when you have PAF to get diagnosed as it is, having to have a 12 lead ecg seems to make it impossible!

TracyAdmin profile image
TracyAdminPartner

Thank you to everyone for your comments. If you need any help or support, please do not hesitate to contact the A F Association, our Patient Services Team are happy to help you.

108cat profile image
108cat in reply toTracyAdmin

I Hi Tracy,

I've just read this post about NICE and their diagnostic gold standard 12 lead ECG.

I would like to know more about the implications of this because I am putting a proposal together for my GP surgery to suggest they screen people using Kardia, and that they have them on hand to give to people to take home and speed up diagnosis. As part of the proposal I would offer to donate one or two to the surgery. Discovering this 12 lead NICE guidance for AF diagnosis today (2nd August 2024) is a bit worrying.

I have night time vagal type PAF which was difficult to pin down because always at night. It took 8 - 9 months of last year to get a diagnosis. Firstly 7 months through NHS and the GP without any result before I insisted on a private cardiology referral. The consultant suggested Kardia (or implant) and was able to diagnose PAF pretty quickly from the Kardia recording.

Not everyone can afford private but the NHS is not set up to diagnose PAF (or asymptomatics) even though the technology is readily available. I am shocked by how long some people have had to wait for diagnosis on the Health Unlocked AF community forum. One person said it took 4 years .. it's completely unacceptable.

Doing a bit of research I discovered that NICE approved Kardia mobile for NHS in 2018 but discovering the 2021 NICE gold standard 12 lead ECG guidance for diagnosis is disappointing to say the least. I would like to know what this implications are for my proposal to the GP, I don't want them just to turn it down.

Waiting for diagnosis without anticoagulation is obviously risky in terms of stroke, and can be very stressful. 12 lead isn't going to help find PAF and particularly night time PAF ... and it would complicate any proposal to screen say over 65s for asymptomatic AF ...

Is there a way I could speak with you or contact you about this? I wouldn't take much of your time.

108cat profile image
108cat in reply to108cat

I meant to add my best wishes and thank you for what you do AF sufferers like myself ..!

Buffafly profile image
Buffafly

I deleted my first reply after reading the first part of the report which says ‘ use an ambulatory ECG monitor, event recorder or other ECG technology for a period appropriate to detect atrial fibrillation if symptomatic episodes are more than24 hours apart. [2021]’ which seems good to me. I realise this doesn’t cover asymptomatic AF but as that is usually (I believe) permanent AF it seems reasonable. I have asymptomatic episodes in between symptomatic ones so it covers that scenario.

momist profile image
momist

My EP has actually never seen my AF on a twelve lead ECG machine, as far as I know. He has viewed my one lead Kardia Mobile recordings, and read the reports from my first attack when I was taken by ambulance to A&E at a different hospital. Nevertheless, he put me on the waiting list for ablation at my first visit.

Not a mention of investigating cause in the new guidelines either. Not a blip. Nada zero zilch. Disgraceful really.

This... bmj.com/content/364/bmj.k5300

in reply to

Basically saying 72% of the information that nice use to assess things is funded by interested parties and only 24% of the people at nice are even aware of it. So that explains the dysfunction right there. Always follow the money as they say. It amazes me how easy it is to see corruption in plain sight by just googling something for two seconds.

dedeottie profile image
dedeottie

I had a kardia device because of long standing AF and my EP is happy to accept the readings so when my husband also started with AF I was able to do his ecg and this enabled him to access medical help right at the start. He was given anticoagulants and a very low dose of flecanide and because of this prompt action it has never progressed. It took me 10 years and 3 TIAs to get a diagnosis. I hope NICE change these guidelines.

Loafinabout profile image
Loafinabout

I’m recently diagnosed and have downloaded Fibricheck on my phone. It works in a similar way to the Kardia device my GP uses when I place my forefinger over the camera aperture and it measures activity for a minute. It reminds me to check during the day and the Ap’s algorithm produces a readout which it saves and which I can print or send to my doctor. You can also request a ‘real’ doctor to review the readings. I get reminded a couple of times in the day to measure and it’s useful to have the history on my phone when seeing the doctor.

Clyde12 profile image
Clyde12

My AF was diagnosed from my Kardia readings. Holster and ECG readings all negative for AF. My present cardiologist does not believe in Kardia and he is saying I do not need anticoagulants. I’m still on them at the moment but I see him in July and am concerned he will stop them. My episodes of AF have always been very short (only 1 or 2 minutes ) and now my blood pressure is being treated I rarely have any AF events.

Sparky143 profile image
Sparky143 in reply toClyde12

Spunds like a good doc!

CDreamer profile image
CDreamer

My AF was originally diagnosed (Circa 2006) by a GP trainee who held my wrist and took my pulse and asked me to beat out with my fingers on a table the rhythm I felt my heart making. He then sent for the nurse to give me a 12 lead ECG immediately which confirmed AF.

Why is the Medical Profession not trusting their own to take a pulse and come to a probable diagnosis? Or do they no longer teach pulse taking these days?

dmack4646 profile image
dmack4646

mine was diagnosed with an event monitor in 2009 i was given this small matchbox like thing which when you felt you were in afib you recorded by pressing a button - simple diagnosis with yesterdays tech

Not what you're looking for?

You may also like...

New sufferer of AF

I have recently been diagnosed with AF. I have had four attacks so far and find them very...
pwoody profile image

NICE Guidelines? Not so nice for those scoring 0 or 1 on the CHADS matrix.

The new guidelines are to be welcomed of course but NICE still clings to its Great Contradiction....

Excellent article on AF research on BHF site

Published on 20/09/24 a very interesting article which references current thinking on AF such as it...
wilsond profile image

Atrial fibrillation: medicines to help reduce your risk of a stroke – what are the options?

https://www.nice.org.uk/guidance/cg180/resources/patient-decision-aid-243734797 This guide from...
Bazillion profile image

Are you struggling to be prescribed an anticoagulant to help manage your AF-related stroke risk?

Ahead of the upcoming NICE Guidelines on atrial fibrillation, the first to be released in eight...

Moderation team

See all
Emily-Admin profile image
Emily-AdminAdministrator
Kelley-Admin profile image
Kelley-AdminAdministrator
jess-admin profile image
jess-adminAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.