Today six years ago my mum died from a massive AF stroke.Heatwave just like this .She was not on anticoagualtion despite having lifelong hyoertension,had 2 heart attacks and was in heart failure.She was 76,3 days off her 77th birthday.
If I knew now what I know about AF....
I am passionate about spreading awareness of AF and treatments so that maybe others might have extended lives.
I wish GPs were more consistent in their knowledge base and attitude to AF.
How can we campaign for this or is there already things in motion?
Xxxx
Written by
wilsond
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We (AF Association ) have been on this quest since 2007 and a lot of progress has been made, especially with Government where there is an All Party Group for AF but still a lot to do. I agree Wilsond that we should all bang the drum at every opportunity. Thank you and so sorry your personal experience brought you to this view.
My heartfelt sympathies on the death of your mum - it’s so hard to look back with the knowledge of now and see what might have been done. My mother died of complications of a viral infection which was uncommon 50 years ago and would have survived with a liver transplant - unknown then. It still pains me after all this time.
I think AF care, information, awareness and diagnosis are all patchy throughout the UK. I contacted our Admin about starting a support group, together with my cardiologist and am now waiting for him (cardio) to plan his strategy and see how he wants to proceed He told me of the great holes in AF care in our Health Board which has 5000 AF patients - two frightening examples were a patient on Amiodarone for 10 years with no reviews and others taken off anticoagulation for medical procedures and not restarted.
The level of commitment needed to start a support group from scratch is, sadly beyond me but if somehow I could get my hands on some posters, leaflets or banners, I would plaster the place here with them. The old mantra of information, information, information is true. What scares me most is the dreadful pressure our NHS is under overall and in Northern Ireland it has been disgracefully let down by lack of leadership and funding. Three years’ wait to see a consultant via ICATS for routine referrals. ☹️
Oh my Finvola! I'm getting restless now after early retirement,although I'm running cooking classes for the local community. Need something to get my teeth into. Yes,knowledge is power indeed. Sorry for your mum too ..I expect like me you feel they got cheated...take care friend x
So sorry for the loss of your lovely mum and no it never eases although the years pass. I think there is more awareness than ever around but we have to keeping pushing forward and each and every one of us raise awareness in any way we can be that via friends, family, our medical practices, supporting the ongoing work of afa etc etc. Together we will be a force to be reckoned with. Let's keep up the good work to date. Best wishes x
I am sorry you lost your Mum, and sending warm thoughts to you on this day. In the grand scheme of things, 76 isn't a great age at all, and it must be a constant source of pain that things might have been very different had she had the full treatment for AF. Thank god we have this site and can play an active role in our own care. I will feel happier when I see leaflets in every health facility regarding AF - in almost four years since my diagnosis I haven't seen one.
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Took the leap of faith 🤞🏻
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