Warning:- some material contains a portion of personal ranting on outdated NHS protocols so some readers may need to look away at that point.
I thought a post may help me to digest the day if I posted a short(ish?) impression for those who may be thinking of attending future events or of what goes on.
This was my 3rd attendance, my first in October 2013 felt as though a door had suddenly opened onto a world I believed I had no access to. Suddenly I ceased to feel as though I was tackling AF on my own, in ignorance and without adequate, informed information from my doctors and acknowledged I had access to informed, updated information from expert Electrophysiologists, researchers and GPs.
Following my first visit, I learned to ask more questions, not just accept what I had been told locally and that it was OK to range further afield if treatments were not available locally. I travelled to London for ablation - which was in those days - not an option offered locally.
My second attendance was last year, 2018, when I will admit to being far more interested in the STARS & PoTS seminars, than AF.
2019 - First face recognised as we ascended the escalators - of course Bob. Always good to see familiar faces and good to catch up with some I hadn’t seen for a year or two - one of whom used to be a familiar poster on the forum - and who you may very well hear more from in the future. Attending the Patient Day is as much about talking to others about their AF journey as listening to the speaker, brilliant though they always are.
My impression was that the focus this year was less on treatments for AF and far more about being an informed, expert patient and great emphasis was placed on the partnership between the caring team - whether it be EP, Arrythmia Nurse, Physiologist, GP or researchers and patient and how we as patients need to be well informed and also play a very active role to help ourselves.
Eg:- If research such as the Lifestyle Changes ncbi.nlm.nih.gov/pubmed/257... have been shown to be as an effective ‘treatment’ for some as drug therapy or ablation for AF - with the greatest will in the world from doctors - those changes must come from the patient’s willingness to engage and to be an active agent in their own recovery. To keep BMI below 27, to drink very moderately (much less than you think to avoid permanent scarring of the heart), to give up smoking, address Diabetes, lower BP etc, etc.
My only wish is that there would be a lot more programmes such as 6 month weekly attendance clinical/education programmes which could be accessible locally - similar to some of those that EP’s in the US have set up and I know operated in Bath as a trial - Cardiac Kit.
I was particularly interested in what Prof Osman had to say on Permanent AF and encouraged to learn that I may have made the right choice in sticking (for the moment) with the Re-Synchronisation Pacing Therapy and rejecting the AV node ablation - which is last resort as far as symptomatic control is concerned - and of course leaves one entirely PM dependant, and which is irreversible. I feel my heart has stabilised again which has a knock on affect on improving my general health so I am beginning to feel the benefits so have rejected the AV node ablation for the time being.
We learned from Dr Vishal Luther what Heart Failure means - and it’s NOT what it sounds as though it means! We learned what an Ejection Fraction is and how it is calculated and how useful it is to know yours but also that is not the B all of how HF is diagnosed. From that we learned that being in Permanent AF does not mean HF and that sometimes we need to remember that. Of all the speakers, this young (to me!) man was the most articulate of the day, able to present a complex subject in an understandable and digestible format - although a screen pointer would have helped!
AF Management - GP or EP? An interesting question well presented by Dr Fay - outstanding AF Expert GP - we all need a Dr Fay in our area as unfortunately it seems I have quite a lot of competition to persuade him down to Devon.
Cloning.....mmmmm - now that’s a possibility. Where do I go for that?
Unfortunately for the majority of us - an uncommonly passionate and informed and actively campaigning GP about AF.
The debate for the EP management was put by Dr Kim Rajappan - EP at the John Radcliffe Hospital, Oxford. Some illuminating facts and figures emerged not least the number of ratio of EP’s to patients in the UK - horribly low - with only about 1,000 EPs in the UK. Unsurprising then that there are long waiting lists. One of the finer points made was that many of the people on their waiting lists - actually don’t need to see an EP and could be perfectly well managed at GP level - if only they gave us the time and.....
IF - we had educated GPs, IF we could get an appointment, IF GP’s knew more about AF and took it seriously and If they weren’t so risk adverse and IF they were up to date with technology so that they could email an ECG for immediate analysis if they required expert opinion.
Here comes the rant.....
Such a LOT of resources wasted because of inadequate communication between primary and secondary care and lack of use of technology.
We now have the technology - SO WHY AREN’T WE (NHS) USING IT and why have they been SO slow to react? Possibly a political/economic answer so I won’t go there.
Which is a subject very close to Prof Peters heart - head of Cardiac Electrophysiology at Imperial NHS, founder member of the Connected Care Bureau to implement innovative care pathways at Imperial NHS, now extended nationally and internationally. Also clinical advisor to Google, partners in the trials on using green light technology which Bob mentioned, helpful to diagnose and monitor AF without wasting resources on Holter ECG’s on people who may only have an occasional episodes of PAF. A gentleman sitting near me told me he had worn several, never had an AF episode when wearing one - but had episodes both day before and after! Finally sense is being talked about a bit of joined-up-ness and direct access to EP expertise without having to wait months to physically see one!
I liked Dr Peter’s phrase - ‘We are still in a 19C medical protocol mindset whilst ignoring 21stC technology’. Is is any wonder we have to wait so long, waste so much paper and resources when I GP needs to WRITE to a clinic requesting an investigation such as a 24hour mobile ECG, patient needs to wait for a busy clinic (my experience 6 weeks) for an appointment which they need to attend in person (!) often needing to travel distance to their cardiac clinic, then wait for ECG to be analysed, the Consulting doctor to read the ECG, dictate a letter to the GP, wait for a administrator to type and post the findings & recommendations.
Arrythmia nurse Stephanie Cruikshank put all of our concerns about AF into the shade as she described her patient story of living with a congenital heart condition which means she now has an ICD. You know sometimes when we say to our clinicians ‘You don’t know how it feels...’. Maybe they do......? and then some!
Dr Louisa Malcolme-Lawes gave us a briefing on ablation technology and an insight into Hybrid Ablation.
Unfortunately, after which we left for the long drive home to Devon, so missed Helen Hodgson’s talk on how to support others with AF - sorry about that Helen if you read this as I would have liked to have introduced myself as we have communicated on other matters.
Ditto Dr Javaid’s talk on - Why is Anticoagulation so Important? As well as Dr Kanagaratnam’s talk on LAO - Left atrial appendage occlusion - you may know it better under the more commercially known name of one of the devices used for this procedure - The Watchman Device - but devices by other manufacturers are often used. Post only this morning about this - should have been there!
I thought that apart from helping myself to digest my huge meal of AF Patient Day information and what is significant for me - this synopsis may just whet the appetite for others to attend in the future. For the very low price of £35 (lunch included) you get easy access to information from the top people in their field, all in one place and you get to ask them questions. How good is that?
If you want to be in the know - be there next year.
I guess my only other wish from the AFA is that these excellent seminars could one day become webinars - I know that would involve a lot of legal, copyright and technical issues but it is being done a lot in other arenas?
Best wishes CD.
it must have taken ages to type it all out. You effort is appreciated. 
Cost of a private ablation in the UK?
Whirlpool!
AF has not returned after all
