Thanks and Up date on today's meeting

[rosyG]

Thank you to all those who sent their experience of TIA/Stroke when not anti-coagualted after AF diagnosis.

I was able to relay these experiences today and I think the GPs and Commissioners and others attending were very receptive to these and other stroke stories.

Everyone agreed that anti-cogualtion should be swift after diagnosis.

If our CCG doesn't get suitable agreement at a meeting in October we are going to start a public campaign and i will be able to use your experiences again to press for action.Any one else with this experience do please e mail me at [e-mail]

One other point of interest is that NOACS seem to be gaining more general acceptance now- some GPs are using them more than warfarin- I know it's early days but this is interesting! ( I like warfarin but switched to Apixaban and think both are good for different reasons)

Thank you again.

Stay well

Rosemary

[BobD Volunteer]

ESC now recommends NOACS over warfarin apparently.

[dedeottie]

Thanks for this Rosie. Sounds like you are doing great things for all of us. Awareness certainly seems to be growing.x

[Marion62]

Interesting about NOACS - Both GP and Cardio said I couldn't change from warfarin. (3 months ago)

[rosyG in reply to Marion62]

You are supposed to have the choice Marion. Look forward to seeing you soon

Rosemary

[PeterWh in reply to Marion62]

What was their reasons?

[howesgilly in reply to PeterWh]

Probably cost. Rivaroxiban for example is fairly expensive compared to warfarin. My argument is that costs of regular bloods and the dose sheets for warfarin probably costs more long term.

[hondajazz in reply to howesgilly]

As far as my GP is concerned when I asked him outright if this was the reason for warfarin . He didn't hesitate in saying no and it is because if you have any bleeding problems on warfarin they can stop any bleeding, on other medication they can't . Its worth everyone asking their own GP what their reason is and putting it on here.

[howesgilly in reply to hondajazz]

That is true I had forgotten that

[PeterWh in reply to hondajazz]

There are numerous past posts where this bleeding issue had been discussed. Very worthwhile reading them.

I suspect that many GPs do not either understand the issues / facts / results or choose not to because it suits them. If it were a major issue NICE would have never ever have allowed the NOACs to have been released.

To me it is a red herring and the risks are absolutely minimal. I suspect that you are far more likely to be killed in your own home (let alone going out into the street) than you are dying form a bleed because of being on a NOAC. If you are a tree surgeon yes the risks will be higher than for 99.9% of the population .... but even then would it actually make a difference? Once you are attended to by paramedics or hospitals they have many methods to stop bleeds.

I m not medically qualified.

[hondajazz in reply to PeterWh]

I appreciate what you say but that was the point of what the doctor told me. You are not more likely to have a bleed on NOACS but if you do it can't be stopped !Im not a medical person either and can usually trust my doctor.

[Marion62 in reply to PeterWh]

No to NOACs because I am in range more than not - but if my INR is around either 2.0 (frequently) or 3.0 I know have to be very careful with what I eat - as I am often on 8/10 weeks testing. I am concerned that it can easily go out of range.

[porridgequeen]

Well done Rosemary, such important work!

[Annaelizabeth]

Those with mechanical heart valves are not suitable for NOACs, only warfarin.

[rosyG in reply to Annaelizabeth]

yes that was mentioned yesterday- they found that in the first trials

[cherylbyrd]

My husband had a stroke because of untreated AFib - which he didn't know he had and had not been detected by his cardiologist. He has recovered from the stroke - because of quick treatment after it occurred and now takes Eliquis and Flecainide. You need to see a real cardiologost and definitely go on an anticoagulant. The risk for stroke is high with AFib and an anticoagulant is standard preventative care in the US - where I am.

[CDreamer in reply to cherylbyrd]

Anticoagulant is also standard care for diagnosed AF in UK also. Rosy is in an area where she is fighting for funding for this treatment, especially the NOACs. Just the intricisies of the NHS funding can be somewhat complicated.