West Country Luinch

[BobD]

I am thinking of another get together probably Wednesday 27th November 12 for 12.30 at The Diggers Rest in Woodbury Salterton. Anybody interested? Let me know so I can book a suitable table.

Cheers

Bob

[Hidden]

G'day Bob,

Sorry, won't be able to make it this time - I'll still be in Oz. Hopefully, catch up with you guys in the Spring.

John

[cupoftea]

Hi Bob,

It's Pat (we met on Monday mornings at NDDH whilst queuing for Warfarin checks, I have no idea where The Diggers Rest is and at the moment my car is out of action. Hope you are keeping well.

[BobD Volunteer in reply to cupoftea]

Hi Pat, I can take you if you want to come. DR is near Exeter and I already pick up another lady near Tiverton Station. Tried to ring you so if you have a issed cal that was me.

Cheers

Bob

[jeanjeannie50]

Hi Bob

Yes, count me in please.

Jean

[BobD Volunteer in reply to jeanjeannie50]

Both of you?

[jeanjeannie50 in reply to BobD]

No, just me. I'm having a cardioversion on 20th November so should be fighting fit my then!!!!

[StClares]

Dear Bob

I'd have loved to come and meet you all but I am hoping to be in Vietnam on the day. I'd very much like to be included in any get-together after my return in January where I could report on the INR clinics of SE Asia and,hoping against hope,news of an ablation in Devon.

All good wishes,

Tina

[BobD Volunteer in reply to StClares]

OK Tina, I had you down from what you said before so a bit sorry you can';t make it but I will post any new dates on here, We seem to do March, July and November at the moment

[MammaCass]

Would love to come, I used to live in Exmouth so know the area, but my appointment with the EP is then, hopefully I'll make the March get together.

[BobD Volunteer in reply to MammaCass]

O K watch out for the "advert " in February then.

[CDreamer]

Hi everyone, I would have come but just been invited to the All Party Group at Houses of Parliament on AF through the AFA as part of their campaign to raise awareness and improve access to therapies.

I am very unhappy with the services offered here in the SW and now chosen to see an EP privately in London who has offered me an ablation as he has told that is my best option and after hearing opinions at the AFA patients day this seems to be so, at the present time.

Bob, is this just a social? Is there any formal support group in the Exeter area? As far as I am aware Torquay is the nearest AF support clinic, does anyone know of anything else in the area? If there is nothing does anyone know why?

[BobD Volunteer in reply to CDreamer]

Hi CD. I deliberately chose this date as I am NOT going to the APPG this time as it just costs me too much money from my limited pension and so soon after HRC I can't justify it.. The timing means that I would have to stay over or get home after midnight if lucky and from here I am lucky to get there and back for under £200! . Don't expect to make a difference but it is always an enjoyable meeting and you will meet some great people and see that there is a lot of support in Westminster.

This is purely a social group. Experience has shown me that trying to run a support group is like pushing water up hill unless you have a very determined medical professional on the team and a hospital to hold the events at. I started down that route 6 years ago before throwing in my lot with AFA and actually believe that the forums provide the support people need. Many of our members can't afford to go to meetings I agree but then they wont come to local ones either. There must be eight AFers within ten miles of me but despite my offers of transport the nearest pick up is nearly forty miles away on my trip!

I am surprised that you find the services below par.It was only moving down here to Devon from Essex in 2004 that had me diagnosed after years of missed opportunities. I was referred to John Dean at RDandE who sent me to Royal Brompton where I had all my treatment. No complaints at all. from me.

Bob

[rosyG in reply to BobD]

Bob, do you know if there are any local support groups in the Epsom or Surrey area?

I wonder too if you have had any one on the site with Bradycardia, possibly therefore needing a pace-maker, who also might have had ablation using the magnetic system at the Brompton- I have done loads of background reading but can't see how it's managed unless they do the ablation first and then pacemaker- in which case what if further ablation is needed??!! It does state on the Brompton site that magnetically controlled ablation can't be done with pace maker in.

[BobD Volunteer in reply to rosyG]

Sorry Rosy I think there was an attempt to start one but not a lot happened.

Sabine does the magnetic controlled ablations at RBHT. As far as I can work out this is merely a way of speeding up the process and has no effect on the outcome. They use large rare earth magnets to steer a magnetic tip on the end of the catheter. Other systems use the EPs hands or with Da Vinci robot a joy stick and the EP sits in an office outside of the room. If you have seen the "Roman Armour" lead jackets and skirts that the staff have to wear in an EP Lab you would understand their attempts to find an alternative. It is the constant X ray pulse that they have to contend with you see.

Of course if you have a pace maker then you can't go any where near strong magnetic fields. I resisted that as I do electric welding and would have to stop if I had one.

BobD

[rosyG in reply to BobD]

thank you for this Bob. If anyone in Epsom/ Surrey contacts you do let me know as I'd be very happy to help organise something locally- have been in health campaigns for last 8 years and had nursing background before going

to university to change track years ago! I feel quite encouraged by what you say as possibly I could have Sabine's ablation ( have been referred to her clinic) and then pacemaker and then if further ablation needed down the line, different method needed

I have found this site tremendously helpful- although everyone has different manifestations of AF a lot of the experiences are the same

many thanks

Rosemary

[Hidden in reply to rosyG]

G'day rosyG,

I used to live in Dorking, Surrey and the nearest that I know of is in Brighton. If that interests you let me know and I'll dig out the contact details. I used to attend regularly and it was about an hour's drive from Dorking. I stopped going simply because I moved to Cornwall.

Aussie John

[rosyG in reply to Hidden]

Thank you John- Brighton would be a little far for me to drive but it might be that they have some members near so would be great to have contact numbers

[BobD Volunteer in reply to rosyG]

Rosy John is now in Australia on holiday for a while. Not sure he will pick up your message so don;t be disapointed.

[JamesH]

Hi Bob, would love to meet up for lunch, great idea, but I live in Portugal and in my case it's not practical otherwise I would be there. J