A few days ago I promised to look into how many ablations were performed here in UK in a year. At the time I said that it had been around 5000 a few years ago but I am told that the numbers now are around 8500 for AF plus another 1000 complex arrhythmia ablations. It must be remembered that these numbers are for UK only. It was pointed out that we have about 20,000 members on this forum and that the overwhelming impression is that the few people who complain of problems indicate that most enjoy a much better life style as a result of undergoing such procedures.
Without sounding overly political one must also remember that the vast majority of these ablatians are done under our National Health Service where doctors are not paid by procedure but are fully salaried so must be considered essential and expected to be worthwhile. I even hear of people being denied ablation pending life style changes such as weight loss which may not be the case worldwide.
I hope that answers the question.
Bob
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Members in other countries may feel that you are making a political statement. I was sorry that the post from someone saying that the US was better last week was deleted as I thought that it was unfair, the replies were quite well behaved and he didn't make an argument out of it. I have looked at the rules and I can't see anything about people not making political statements. Mind you I think that any post that had the word Brexit in it last year would have been pulled very quickly.
I had mentioned my upcoming vitrectomy op and got a reply from someone having to have the same operation. I wrote about it and as the post had disappeared I don't know whether he or she had seen it.
Does anyone check if the 20,000 members are still around?
I guess the number of people on here who have had ablations which didn't work or who are on drugs far outweighs those who have been cured.
In truth it’s almost impossible to know the answers to your questions but I won’t let that stop me from trying! Those of us who been around 6 or more years see names come and go. Only a relatively small number have stayed the course and continue to make valuable contributions which help AF patients come to terms with their condition for which many are clearly grateful. Some continue to dip in and out but the vast majority I’m sure, tend to come to terms with their condition and benefit significantly from procedures such as an ablation or pacemaker and/or medication regime so just decide to get on with their lives. We can play around with stats til the cows come home but I also think when dealing with a mongrel condition like AF, it really is difficult for laymen (and women 😉) to draw any meaningful conclusions. We hear that in the UK, around 1.25 million people have been diagnosed with AF. If you take BobD’s figure currently of 8.5k ablations performed a year and scale that down over say 10 years, then maybe there have been around 62,000 ablations carried out during that period. Because many of us have had more than one ablation, as a guess it might mean that less than 40,000 individuals out of the 1.25 million have had an ablation. How many of those who might be members of this forum, God only knows!
For what it is worth, my theory has always been that people generally join and contribute to forums when they have a problem and need help but once, for whatever the reason their condition stabilises, their need diminishes. If this is the case, the fact that we rarely hear from members openly regretting that they had an ablation suggests more positive than negative outcomes but this is only my personal opinion.
I’m not sure there is any real benefit in knowing how many of the 20k members are currently active but I suspect the number is probably quite low but again, that is a personal opinion.
Again, it’s not my place to comment on how politically motivated posts are managed but in the past, many have been divisive and detract from what most people believe forums like this are designed to achieve. Essentially to help and support people suffering with arrhythmias.
Yes, I probably wouldn't have stayed because I feel I have been cured. I am intrigued by how varied all your heart rhythms are and how it hits people in so many different ways. Also all the drugs you are taking, I only got as far as bisoprolol. I thought it was all a lot simpler than it is.
I would still be taking my 500IU of vitamin d if I hadn't learned about how important it is for my immune system to work well. It can be stored in the blood and I am now taking 3000IU a day so if I get Covid-19 I stand a better chance of a full recovery.
And one of my grandsons has PoTS and his father has ectopics so I might learn something here. Talks on tilt table testing etc are on the STARS Patients' Day so I will watch those.
Do the administrators send out 20,000 emails every day? Might be worth asking them if they still want to be subscribed.
Well it's up to them but I doubt that there are anywhere like that number who log on to this site every day.
I think it's a shame that only the poster can add a picture, just one, when more would be useful. I suppose that's because extra bandwidth would cost more.
Perhaps members of this forum should be removed from the list if they haven't been active for over 5 years? However, I guess a lot of people just like to read the posts, draw comfort from them and not actually write anything here.
True, but they may send donations or contribute to Patients Days etc., so it’s unlikely that the powers will want to do anything that could adversely impact on revenue and who could blame them!
The first Patient's Day was allied to the first Heart Rhythm Conference in Birmingham UK in 2007 when AF Assocation was born. Personally I have been to everyone since until this Covid virtualised version. I hope and pray normal service will ressume in 2021 so that we can meet old freinds and share experiences as before. Flapjack has been a thorn in my side for many of them lol 😂 (love you really mate)
Patient's day probably doesn't raise that much all told as there are three days of medical meetings and a huge Gala Dinner at the same venue which kind of subsidises the patients. With three separate groups for all the aspects of arrhythmias including AF etc there are maybe 200 people at the venue but at considerably more than the cost of the virtual meetings. The raffle revenue has to be added in to the loss but of course a lot of us sent donations anyway which probably offset that side.
The loss of the medical side will be much higher than that to the patient's. Against that of course the cost of venue is gone and for me it is a huge saving as I had to allow at least £300 for the weekend with the registraction fee, hotel and travel costs and organising the Pink Carnation Supper the night before.
The biggest threat to the charity is lack of fund raising opportunities due to covid lockdown which means that we all need to do our bit within our means.
Maybe by getting vaccinated as soon as it's offered. The Daily Mail thinks it may be before Christmas. I think they are probably right. Once the Oxford vaccine is approved then I think the government will want to roll it out as soon as they can to save jobs and lives and all that, including charities.
No doubt there will be a lot of people on here who will say 'absolutely not and over my dead body' but it has already been tested on thousands of people. Which is worse the vaccine or the virus?
Hi Physalis, re the Oxford vaccine, a friend has a family member who is working on it and has been one of the volunteers to try it. They reckon it will be rolled out in Feb/Mar.
Re using this group, I read the posts that come in the daily email without fail, but I don't often post. I think there are probably a lot like me, silently keeping in touch (lurking?).
Yes, I think it will be difficult logistically getting the vaccine out to 30 million people and the army will have to be used. Will be interesting to see what the government's response will be when the Oxford vaccine results come out in the next few weeks. And for that matter, what the public's response will be.
I'm sure there are thousands of people who look at the posts every day and benefit from this forum. I'm not so sure there are 20,000 of you.
My son is also working on this vaccine and hopeful that it will start being rolled out just before Christmas. I know some people will have reservations about taking the vaccine but I for one will be having mine as soon as its offered
Hello Jeannie, Can I just say that I am one of the quiet ones. You are right I used the forum a lot when I was first diagnosed a couple of years ago to learn about dealing with Afib. However, the form has been invaluable to me in living with it. I saw my cardio a couple of weeks ago and expressed how brilliant it is. I feel ‘I’m not alone’ in this journey and have come to rely on my morning emails which are read without fail. He said this was an excellent forum. I believe I genuinely couldn’t manage this horrible thing without the positive experiences from other members and would be lost without it. At the moment I am taking sotolol and Apixaban with Bisoprolol as a PIP with clusters of AF and then I get ‘on a roll’ for a few months. Long live this wonderful forum. I don’t contribute very often because I don’t have as much experience as others but my goodness do not underestimate your contributions. Long live this forum x
Couldn’t agree more about how brilliant this forum is, I found it when I searched for “scared of cardioversion “ by the time I went in for it after reading lots of posters experiences saying it’s no big deal I was really calm and relaxed about it.
I’ve read so much that has really helped me. As I found it very early on I’ve no idea how well I would have coped without it (not very well I suspect).
It’s also helped so much with knowing what questions to ask at appointments and understanding ( some of) what is being said to me.
I Read the forum everyday, don’t post much but “like” a lot of posts. A lot of the time what I would have said has already been Mentioned.
I am also a bit of a spectator — I choose not to medicate my lone paroxysmal afib and decided against having ablation therapy some years ago, but I am really grateful for all the input here. I hadn't, for example, joined the dots between my afib and my tinnitus until I delved into the many posts on the vagus nerve link. Been on quite a voyage with that one now!
So, many thanks and much gratitude — I may not say much, but I appreciate every contribution. As Fibber222 says — never underestimation their value!
I think it helps to raise the bar for all of us (and helps make this the successful Forum it is) when you have experienced contributors like BobD & Flapjack etc. Don't let this make you underestimate the possibilities of your own personal contribution though. The rest of us only relate what happens to us personally and the likelihood is that your experience will help at least one of the 20000 members, which could be just what they need!
I haven't been able to type much since breaking my wrist, or rather when I do it is very slow and laborious. However the forum's posts arrive daily in my inbox and I read most of them and have done since Afib appeared in my life five years ago. I find most of the advice on here invaluable and very rarely look anywhere else for information.
Physalis, I am really surprised you have had a post disappear. That so rarely happens, normally off-topic and the more inflammatory posts stay for all to see. It could be that the other person deleted the post?
As I understand it, a few days ago there was a post from someone in the States who commented on the NHS. Within that post, Physalis and others were engaged in other conversations not directly related to the original post. However, because the original post was deleted, all the other posts were obviously lost as well, which is unfortunate for those involved in the different discussions. I assume that those involved could always post separately if they are seeking information......
No, it wasn't my post. It was someone from the USA saying that their health system was a lot better than ours. It immediately got reported as being political and after it had been running for some time it was deleted. I think it was last week.
I don't know whether many posts get pulled. I only noticed it because I wanted to know if my reply to someone had got through.
I suppose it could have been the poster who deleted it. I don't know. Maybe Admin could say.
See if they delete my post Physalis. Whoever wrote that post about how much better healthcare is in the USA probably has what we call Cadillac insurance. Which means that person can afford very good insurance and has no problem getting whatever care is needed. I don't begrudge the fact that he or she has great insurance but it's not the case for everyone in the USA. Some people cannot afford the Cadillac insurance. I can't. And when you can't, you don't get the better care. Some people can't afford insurance at all. Some of them end up going to the emergency room at the hospitals and usually get minimum care. The big problem here in the USA as I've said before is that the insurance companies have come to rule the care in this country. They limit what Drs can do. What procedures they allow. What medicine you can get etc etc etc. Here, a Dr better be 100% sure you need a certain procedure or tests or specific medicine and he better be able to prove it. Because if the insurance companies decide the Dr was wrong the Dr sometimes has to pay out of his pocket. Yep. That's the good healthcare that other person was talking about. The insurance companies rule the roost here. I just talked to a neighbor yesterday about this subject and she said a Dr she knows juat retired early because he was fed up with fighting with the insurance companies all the time. And there's been other Drs retire for the same reason. I've read that there aren't as many people going to med school and there will be shortage of Drs here in the coming years. Soon the USA will be voting for a President. Always one of the issues is fixing the healthcare system in this country. It won't be because it's too political. Too much holding hands between the insurance companies, big pharma and the rich corporations looking for big profits. It really saddens me to see what has happened to healthcare in the USA. So many people suffer needlessly. So whoever that person was who thinks the USA has better care than the UK or other countries lives in a bubble. Has his Cadillac insurance and probably no empathy or sympathy for those less fortunate. Sorry for this long post but felt I had to set things straight.
Wanted to add. My neighbor I was talking about has supposedly good insurance and she has a condition and has gone through several Drs trying to find help. She said she may have finally found one who may be able to help her. So sometimes even the good insurance doesn't always work. It's just crazy.
I have found so much help from this forum. It's a blessing.
Well I totally agree with you. He posted that and then I replied to him saying more or less what you said. Quite a bit less but the sentiment was the same. Everyone then pitched in and he got very little, if any, support.
I assumed that, because the post had been reported as political, that was why it had gone. I can now see that it is more likely that he deleted the post himself.
He may have deleted his post when he realized he wasn't going to get many to agree with him. I tend to think people like him have blinders on and deny that the medical system here in the USA isn't so wonderful. For everyone. It has been going downhill steadily for decades since I was young. I'm 68. And when they came up with Obamacare. What a joke. My friend's son has Obama care (aka the Affordable care act). He pays almost $1,000 a month. He had to go to the ER recently and Obamacare paid NOTHING. He ended up paying the whole bill. Over $2,500. And if you let your Obamacare lapse you have to pay a penalty until you get back on it, if you want it. It has some serious flaws just like all the other insurances in this country. There's an old saying, "the truth hurts". Guess that's what happened to that guy who posted. I don't care what I say. Because what I say is the truth. And our government members (Congress) don't worry. They have the BEST insurance paid for by the taxpayers. I'd be ashamed knowing many of the people who voted for you suffer every day from lack of good care or lack of any care at all. But then I have a conscious. Couple hundred years ago if they saw what I'm writing now, I'd be tarred and feathered. 😜
Don't know what time it is over there but have a wonderful rest of your day!
I read the forum every day. I have posted and I also sometimes reply to posts (like today). I would say that 95% of the time though I just read and learn.
Hi, Physalis, just wanted you to know that I had a vitrectomy a few years ago and if there are any questions I can answer for you, I think there is a way to contact me by email.
My ablation thankfully was successful and I've been lucky I guess, but I still come in regularly and chat to anyone asking questions relating to my experiences, good and bad, and try to reassure anyone feeling anxious or depressed by it all. I do agree maybe a lot who are successful in their treatment then drop off the radar. Personally for me I enjoy joining the chats and some of the subjects raised, and enjoy the humour, and the odd bollocking from Jean when I get a little cheecky 😂.
Especially at this time I feel people need this marvelous resource we have in this forum of empathy and knowledge, anyway, off for my 3 mile walk, keep the box of chest frogs in the box, hopefully for a long time 😎
Hi Bob,
l find this forum an invaluable source of information which has helped me come to terms with this ever changing condition. The knowledge expressed here, by ordinary people, is brilliant and makes it easier for me to understand the reasons this condition exists.
I do not post much in the way of helping others as l don't feel l have enough understanding myself but l am eternally grateful to those that do.
Some years back AF interrupted my life , I found this forum which I have read every day since . I have learnt so much , I have laughed , I have realised how lucky I am and at times I have had to " bite my tongue " I have contributed occasionally but find it better for me to just listen . Am I one of the " lost 20, 000 " ? No , just a grateful one x
Thank you everyone for your comments and especially thanks to Bob for his post in highlighting how many ablations take place here in the UK which shows just how these procedures have increased and also for highlighting our NHS here in the UK too.
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Ablation Number 3 on Thursday
Ablation number one done
Maximum number of Ablations?
