AF Association
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Anyone with AF living in the Stroud/Cheltenham/Gloucester area?

Hi, I'm wondering whether there's anyone else with AF living in or near Stroud/Chelt/Glos who would like to be in touch to exchange info re our local GPs, cardios, EPs and AF clinic? I'm hoping that perhaps we might be able to help each other navigate our local services to get the best treatment we can. Looking forward to hearing from anyone interested in making contact.

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Kath if you look up Chris Harmer in the members list he is in your area and done a lot of work with local CCG etc on AF treatment so may be worth your while contacting him. He doesn't post much these days but is listed as a volunteer.

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Thanks Bob, will do.

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Hi - I live in Portishead which is in the new Bristol/S Gloucester/N Somerset CCG grouping. Not sure how far North this reaches and whether it includes your area. I'm also active with my local Healthwatch.

Lance

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Hi, I think you're in another health area - I don't think you'd be referred to Gloucester Royal or Cheltenham General. But have you come across Dr Tim Cripps, cardio in Bristol for NHS and Spire private hospital? I've heard good things about him.

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Yes I think I'm in a different commissioning area - our referrals for cardiac are always to the BRI or Southmead. I'm not familiar with Tim Cripps, but the Bristol Heart institute (part of the BRI) is the local centre here and has good reports.

But with all AF treatment, no-one is offering a cure, so my advice would be to focus on what causes you concern or problems and what can be done to reduce the effects of these.

I would also recommend you contact your local Healthwatch to feed back your experience - they have some leverage with the CCG as they have a statutory role

Good luck

Lance

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Yes I would like to be in touch. This Afib. is so isolating. I live in the Cotswolds about 15 miles from Cheltenham. How should we be in touch?

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Hi, I've got in touch with Jill who lives in Gloucester and we've just started emailing, and we might have a phone chat sometime. It's a very loose, open arrangement for whenever we feel like it with no pressure or expectations. We're both newly diagnosed, so finding our way around this whole topic and the local treatment options. You'd be very welcome to join in with us, if you'd like to message me with your email address.

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My email address is junomiller@icloud.com

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Hi am Stroud central [ Homebase] based, suffering from the restrictive services & closure of A&E too . As mine involves breathing oh dear??! We could meet up ?!

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Hi, KathFrances, I live in the country near Stroud and would be happy to be in touch. I was diagnosed with Paroxysmal AF on 1st September last year and am not getting on at all well with prescribed drugs (1.25mg is far too much for me to take daily so told to stop and often not a good idea when I have the odd episode either). Look forward to hearing from you.

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Hi Sandibee, a few of us made initial email contact a long time ago, but haven't taken it any further. Sorry to hear you're not doing so well with the meds. I take Pradaxa (dabigatran) daily plus have PIPs (pills in pocket) of 2.5mg bisoprolol and 100mg flecainide to take whenever I have an episode. So far it's working very well, I'm much more aware of my triggers and my last AF was in mid December. If you want to private message me with your email or phone number, I'd be happy to have a chat.

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I'm not sure how one does private messages. I.25mg bisoprolol daily was too much for me as it brought my heartbeat down low so they told me to stop taking it that way and use it as a pill in pocket when I have an episode but not if my heartbeat is low and then it usually makes me feel tired for the next day or so. I have agreed to take apixaban but 3 every 2 days instead of 2 a day as I weigh only a little more than the point where they suggest half the dose! I still get tired and wish they would realise that people are different! When I finally got to see a cardiologist he could not be persuaded to suggest anything that might be more suitable but said he would like to do a "blood flow" test on me. Do you know what that might be like? Apparently they give a drug which makes the heart act as it would when you exercise and then take a look at it. I suggested that I just exercise but he said no so I am rather concerned as I seem to be over-sensitive to drugs. I'm wondering if I can find triggers- (once it was a Chinese take away) and avoid the episodes which rarely last very long and never reach a very high heartbeat. I am doing more meditation which helps.

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