New NHS Decision Aid for AF

[Engineer46]

TracyAdmin recently (2/8/22) provided information about the new NHS Decision Support Tool for those with AF. Here is a link to the document:

api.heartrhythmalliance.org...

Having taken a detailed look at the document it seems to me that AF patients could be more confused after reading it than they were before.

For example:

1.  The document makes no mention at all of Cardioversion, as if it is no longer a treatment offered by the NHS.

2.  On page 2 in the "Do Nothing" box, bottom left, it asks "Is this an option for you?" and asks you to "Tick the relevant box".  But Box 1 (Yes) is already ticked.  I can see why, but it looks like a mistake in the document.

3.  In the same "Do Nothing" box it states: "If you choose to do nothing and have persistent AF, you may not be able to choose left atrial ablation in the future".  There is no explanation for this statement and it makes no obvious sense.

4.  Again in the same box it states:  "If your AF is currently paroxymal (sic) and later becomes persistent, then the ablation options might not work as well for you (see 'risks' section of this document)."  However, in the 'risks' section (Page 6) the words paroxysmal and persistent do not appear, so this is not at all helpful for someone trying to make a decision on their treatment options.  Perhaps they meant you to refer to the 'Benefits' section (Page 5) rather than the 'Risks' section.

I could go on...

Overall I think that this is a poorly drafted document and not particularly helpful for those trying to weigh up treatment options, which is a shame since there are many people on the forum who are clearly having difficulty deciding between the different treatments available.

If anyone else has read the document I'd be interested to know their opinion.

Paul

[Jalia]

Overall i would agree with you. Its not perfect.

I certainly agree that to leave out DCCV is a major omission. We know that it is not a cure(what is ?) but it can give several years of respite, as I well know, and is still offered.

[CDreamer]

I just glanced at it and thought it looked really helpful but didn’t read it in detail and I’m way past the making decisions stage so your feedback may be really helpful to Admin. Have you emailed them directly?

As I’ve never, ever been offered a DCCV I don’t think I ever considered it as a treatment option - it’s only ever been presented to both my husband and myself as a diagnostic tool to see it NSR was achievable and for after ablation if bouts of AF persisted for more than a few hours. I wonder if that accounts for the omission? I realise that it has been affective for some, for a time.

[Buffafly in reply to CDreamer]

I have understood DCCV to be an emergency intervention to treat the symptoms of AF. The first time I had a major episode and was taken to hospital the diagnosis was that I had a pericardial effusion caused by a virus so I was discharged with diltiazem to slow my heart rate and listed for cardioversion which I didn’t need because I reverted before the appointment came up.

[CDreamer in reply to Buffafly]

Never, ever been mentioned or suggested - even when I was on the Acute Cardiac Ward in AF with HR exceeding 180 for 3 days with unreadable BP. The only time it was talked about was for my husband who had been in persistent AF for some time to see if an ablation would be worthwhile considering. He had to have an angiogram, echocardiogram and a scan and screening prior to the procedure. Didn’t work.

But I take your point and see many posts where it is offered. I’ve always been curious as to why it was never mentioned for me.

[Buffafly in reply to CDreamer]

Considering BobD’s experience maybe it’s not safe for everybody? I would have thought you would have fulfilled the criteria perfectly, as you say.

[irene75359]

I'm surprised that the draft document wasn't passed to at the very least one other person to check 'Does this make sense?'

[Buffafly in reply to irene75359]

I read it carefully and it made sense to me.

[MoyB]

I agree that this should not have been passed yet as it does have errors in it.

However, in principle, I would have found it quite helpful when I was 'sitting on the fence' about having the ablation done, having been given some information briefly over the phone 9 months before the procedure and having to turn to this site for full info as none was forthcoming from the hospital.

I found it reassuring to read after having had the procedure as it indicates that I made the right decision to go ahead.

I think it needs to be rewritten so that it is correct (and the tick is NOT in the 'Do nothing' box). I know nothing about cardioversion but if this is still an option, I don't understand why it hasn't been mentioned.

Overall, I think people could find it helpful to go through with their medical team (BEFORE they are on the trolley going in for the procedure). If it reminds the medics to actually tell people about their options instead of just telling them that they are booked in for the procedure (as happened to me) and also that it may need to be repeated (I was told this five minutes before I was wheeled in) it can only be a good thing.

xx Moy

[Hidden]

Whilst I agree with a number of points you make, I think you may be coming at this from slightly the wrong angle. Although I had no involvement with this document, with BobD, I was involved in producing the two AFA factsheets regarding preparing for and recovering from a catheter ablation. It seemed to take an eternity to get these documents through the scrutiny process established by the AFA and these documents only provided non-medical information!

I see that at the end of the document, it says it was funded by the NHS and explains how it was created and who provided the input. Of course this doesn’t mean that things couldn’t have been done differently but it does suggest that an incredible amount of care and thought went into producing it. It also implies that it would have not been released without scrutiny.

To me, the document seems to be designed to provide a guide to recently diagnosed AF patients as to what AF is, how it’s likely to affect them and what options are available to treat it. I don’t think it’s intended to go into specific details about treatment because that’s what doctors are for and all treatments should be specific to the patient.

Agreed there was no reference to cardioversions, nor are there any references to specific medications or the manner in which they might be taken but these are things a Doctor will discuss with the patient once the patient has considered all the options available, as featured in the Aid. Perhaps it could have made a reference to having a cardioversion before a patient with persistent AF is considered for an ablation, but here in the UK, this is usually standard practice anyway. Perhaps that is why they chose to keep the content relatively simple and straightforward.

Regardless of all this, I think it is important to raise issues like this but I know from my own experience, it’s very difficult to please all of the people all of the time…….

[MummyLuv]

I agree, it’s makes no mention of hybrid procedures for those in long term persistent or with multiple failed ablations before moving to pace and ablate. So IMO have some really fundamental gaps.