yesterday I had a telephone appointment from a cardiologist that I’ve waited 12 months for.
To say I’m disappointed is an understatement. The last cardiologist I spoke to, said if I lose 10% of my body weight, an ablation would be the best option.
The one yesterday, told me I had to have a BMI of 30 or less before they would consider doing an ablation. He said the only way forward was to prescribe flecainide.
I worked it out that it would mean I would have to lose 7 stone (98 pounds)
I also told him that I was getting episodes every 2 months on average and that when I did go in to AF I was at a loss as to what to do. I asked if there was a dedicated nurse or similar to liaise with. I told him that sometimes my heart rate can be as high as 175+ and because I couldn’t get advise from anyone I was self medicating on bisoporol. His advise was that unless I had chest pain, serious breathlessness or fainting I should just sit it out.
I asked this doctor for his name for my records. He told me to get the nhs app and a letter would be on there with details on. I told him the app was less than useless and that I had tried several times to use it without success. His reply was ‘it’s a very good app you must use it’
Am I wrong to feel as angry and disappointed as I do? Is his advice correct? I don’t want to start taking another drug. I’m just feeling let down.
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macymoo007
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Sorry to hear about your experience. I would be very disappointed too.
Make an appointment to see your GP and ask to see the letter from the consultant and discuss it with them - you may find that your surgery will copy it for you - some surgeries have forms to fill in for you to do this and it would be polite to ask if they wanted to charge you an admin charge for doing so.
It seems that you can have mixed experiences with the NHS App. My friends in Oxfordshire have an absolutely great experience with tests results appearing on there sometimes within hours of them being done but some other friends in nearby Berkshire and Warwickshire do not have such a good experience and hardly use it. I do know that you have to ask for full access to all the App to get the most out of it. However, like all things it depends what is put on there as to how much use it is. Is there any one at your surgery who could perhaps help you get the most from the App - worth asking? We don't have it here in Wales so I always ask for a copy of all letters and test results to be copied and posted to me. Once I have the letters if I need to discuss with either specialist nurses such as cardio nurses GP or consultant I then go ahead and make an appointment to see them and discuss - sometimes it just takes a call to the consultant's secretary at the hospital and they ask the consultant and phone me back with relevant information. If going to see my GP this also ensures that they have also received the information and have looked at it as some time ago - about 15+years, my wife had a letter sent to her GP from a consultant that was just placed on her file and not actioned - not even sure if it was read - it was actually asking that a medication she was on be changed (it wasn't). We found out about 5 years later when she had to go and see another consultant about the same complaint - which obviously had not improved.
I hope you are continuing to try and lose weight. Maybe you can ask for help with that via NHS or Heart rehab classes if there are any in your area? Try not to be disheartened after this setback, as you continue to lose weight and hopefully become more active you should begin to feel better.
I feel that I would want to complain (politely) about the different advice I had been given over this time so you may want to find out how you should do this through the PALS scheme at the hospital where the consultant works maybe.
Yes, I feel you really should discuss all this with your GP and find out what the previous consultant and the new consultant has written in the letters following your appointments. I would make an appointment and tell the surgery what it is you want to discuss so that your GP is ready with the information and it would be worth your while asking the practice manager to copy those letters for you prior to the appointment so that you have read them and know what to ask your GP and also ask what other help is available in your area to help you.
Hope you can sort something out and get some more help and advice.
Hi Desanthony, I live in Wales and have the ‘NHS Wales’ app. It shows my repeat prescriptions, past medication and appointments. I also order repeat prescriptions on it. Could it be there are different apps, or maybe not all Wales has access to it ? Perhaps it is also dependant on your local surgery being signed up to it ?
Yes it is dependant on your surgery being signed up to the App. Just found out yesterday that our surgery signed up to the NHS Wales App 5 days ago so just signed up but have to wait up to 10 days for an e mail confirmation once they have checked my ID and video. There was a Patient Knows Best App which some surgeries in Wales were asked to trial a year ago and since then they are slowly and quietly rolling out the App nationwide. I read up about the Wales App in a Computer Weekly article yesterday and they are hoping to add features to it as time goes on. The article was really interesting and just hope it works out.
Prior to this we did have access to repeat prescriptions on line with our surgery but just when we would need it most - over the lockdowns they suspended it ad had to get repeat prescriptions by telephoning the pharmacy - as you can imagine it was hard to get a time when the telephone in the pharmacy wasn't ringing off the hook during that period so when we could we would pop into the pharmacy on our daily walks all masked up and request our repeat prescriptions! Looking forward to getting onto it and seeing how it works and seeing them add features to it as time goes on. As I said my friends in Oxfordshire have a wonderful experience with it and can find out where they are on waiting lists as well. Which is something that they are going to get on the Wales App too - which is what I am most looking forward to - though we know the lists are longer than ever.
I'm also in Wales. We can't read test results on our App here. A but behind alas. But it's working well for repeat prescriptions and appointment reminders at least.
I’ve had the NHS-Wales app for some time but my surgery only connected to it a week ago, ironically I had the email that they were now on the app when I came out of my 3 month hospital review and they stopped my meds.
I’ve used patientsknowbest for some time and get all my test results and consultant letters to GP on there as soon as they are sent. I believe this is the system that will connect in to the app in time. patientsknowbest.com
I suppose the only way to find out if this works for you is to register using your NHS login details on the link above.
I live in Cardiff and signed up for patients know best but my surgery hasn’t signed up and I’m not sure if any others in Cardiff have either. I would be interested to know if they have. X
My experience is I am now locked out of NHS sites as I do not have a mobile phone, seems double standards we can pay for it through taxes etc but can't use it if not a mobile phone user.
There are alternatives - PatientsKnowBest is accessible through computer and your GP surgery website should show you the site they use which can connect to NHS App but still accessible through a computer browser.
Thanks for try, but did not find PatientsKnowBest accessible, they want photo ID I do not have or details from my GP I cannot obtain. GP surgery have offered no help and just tell me to use NHS app.
I access my records from my laptop, I don't have the app on my phone because I get fed up of having so many apps on it.Just go on the NHS website and follow the instructions.
I didn't realise but you're right, I have just checked and they send a security code to your mobile phone. However, that doesn't have to be your mobile phone. I recently lost my phone and needed a security code for something else, and I gave my husband's number and got the code without any bother.
If you have a partner, close friend or someone who pops in and you know them well enough, maybe you could ask them if it would be ok to give their number and get the code sent to them? But I don't know if that number is kept on your record, maybe someone else can answer that.
Alternatively you could go into your GP surgery and ask to speak to a secretary. They will be able to print off relevant stuff for you.
Hi, thanks, my understanding from email correspondence, ongoing, with them is the mobile phone is so that they can send you a text message to confirm its you every time you access the site, so friends phone won't do. Also the principle for me is that many of us especially as we get older would prefer less tech which we don't understand to more tech and with an aging pop the NHS should be providing easy access for everyone not just mobile phone users.
I access it from my laptop using my email address and password. After the first time - registering and needing the mobile phone for the code - there has been no need for my mobile phone. If you are using a laptop it's quick and straight forward once you are registered.
Unfortunately, whilst I agree that a lot of older people don't want to or are unable to use technology, it is the future. We have to understand that the world has changed and it's no use fighting against it. We have to accept it and get onboard, and if we do that our lives will be easier.
It's not always easy to accept change and I hope you can find the answer you are looking for.
Sorry don't agree with you, for me it is an equality issue. Increasingly as you say there is more tech, but its developed by and for younger people based in cities, who seem not to bother taking account of issues re sight, mobility, speed, hearing etc, etc. We are rapidly producing a society of haves and have nots which seems to expect everyone to have and be able to afford PC, mobile, printer, photo processor and keep all this tech up to date. Where do they think people get the money for this. So the NHS is probably excluding a large number of people who may need it, and don't really seem to care, ala Horizon and Post Office.
As I said, I agree that a lot of older people don't want to or are unable to use technology.And I agree that society isn't equal, unfortunately, and there will always be obstacles for all of us that aren't wealthy.
I wish I could change that but I can't.
I did say that you could go into your surgery, if you are able to, and speak to the secretary who would print off whatever you want to see. I know our surgery does it.
So as far as I am able to (and I'm not tech savvy by any means) I try to learn to do the things I need to make life as easy and inclusive as I can for myself and my husband.
I was trying to help you to access your NHS records, I'm sorry if I offended you.
So sorry for your situation and agree that you shouldn’t be self medicating and should be able to speak to someone about taking medications and your GP should help you with that. Are you taking anticoagulation meds?
It seems that you didn’t get what you expected and that could have been because the first cardiologist gave you incorrect information. My understanding was that 10% loss of body weight will help decrease your AF burden but is not criteria for an ablation.
I seem to remember, I could be wrong and it was a different person, that I replied to your last post saying I believed that BMI of 30 was the cut off point? There is good reason for this as the risks involved in ablation procedure rise when you are overweight and the chances of lasting success are reduced.
NHS app - personally I like it, I think it an excellent app for the simple things like ordering repeat prescriptions but has it’s limitation. I do find it complicated as GP surgery use Anima as a Gateway to it and previous secondary care used MyCare and this secondary care are using PatientsKnowBest so the NHS app is used basically as a conduit. I find a lot of people get too put off and very confused by the endless security to gain access to all of the apps which I think is a barrier to many people who use it.
What’s the alternative? Paper by snail mail tends to arrive after the event in my area so people miss appointments they didn’t know about waiting for snail mail. Not enough admin staff to answer the phones even.
Many believe NHS is one entity - it is NOT! Billions of £’s have been spent over 20 years trying to get one integrated IT system, all the analysts told the NHS - not going to work so I think they did well getting the NHS operational and works well enough, once you are through security.
I have benefitted from having an arrhythmia clinic with several dedicated specialist nurses, all paid for by external sources - in one case a pharmaceutical company, another a charity. If you are lucky enough to live in an area with a large specialist unit you probably will have access but many such clinics are overwhelmed and it is still incredibly difficult to actually speak to someone was my recent experience. This is the NHS world we live.
You could ask for a second opinion but if the criteria for an ablation is not met, you are unlikely to get a different response.
As to feeling angry and disappointed, you didn’t get what you expected so it’s a natural reaction but unfortunately will not help you, stress is a trigger for AF.
Unfortunately, apart from seeking a private consultation, I have no suggestions for you except to contact your GP for advice on medication and look at and implement a Lifestyle Medicine approach, which really does help.
With this talk of the NHS App I was amazed to find out whilst looking on my syurgery faceache page for the pharmacy opening times over Easter that our surgery signed up to the NHS Wales App 5 days ago. I have signed up - was quite excited about it and it wasn't too hard to do all the sign up things but excitement petered out when I realised that I had to wait for an e mail of confirmation from them which could take up to 10 days - still, it's good to have something to look forward to! I am told it is not going to be quite the same as the NHS England App and I am sure we will manage to make a pigs ear of some things on there in our own unique Welsh way :).
The Pharmacy opening times were not there so had to ring them anyway. I put my prescription in late so need it before Friday but may not have been able to make it home in time tomorrow from Dentist's - without forgoing my lunch out - with I hope my new plate which started being made back in September which would mean I could eat all sorts of things I have been unable to eat for months! Glad I did have to ring the pharmacy as found out they are just waiting for a couple of tablets to be delivered today and I can collect later. Also, the sun shone for about 10 minutes which always makes me feel better - it even made me feel better about the NHS App so feeling optimistic here for a while.
I would be more annoyed at the poor advice you were given previously re weight loss.Sounds like a fob off to me . A BMI of 30 is still quite high and if you are still 7 stone over that then your current doctor is quite right in terms of any likely success. An ablation at this stage would likely be a waste of time whilst still carying some dangers.
Keep up the good work and I'm sure things will improve.
I suspect that phone consultations are likely safe for AF after initial diagnosis, but are a deeply unsatisfying and frustrating experience. I feel for you and will now refuse them. Yesterday, I had to pay £200.00 for a private consultation rather than wait months. The specialist told me that the NHS problems began with cuts to training and budgets over a decade ago and are forever worsening. Satisfaction with the NHS in 2010 was 70% and is now 24% and falling. How bad can the authorites let it become before there is a national outcry? The government will not train anywhere near enough nurses or doctors despite an ageing and rapidly rising population. It's madness.
Your specialist was right that the NHS app can be an excellent resource, by the way, but your GP surgery will need to do their part to have all your history put on it. Don't give up on it.
Being overweight is going to be a problem these days as doctors are convinced that it is linked to, if not causing, so many ills, including AF. We've just lost a dear friend who was herself maybe 20 stones, although she had reached the grand age of 94! Her weight, though, had meant she became increasingly immobile this last several years. She was forever wishing she had slimmed when she was younger as, try as she might, she couldn't lose weight as she became immobile.
My wife's late aunt, herself always having to watch her weight, ran a very popular local diet club for very many years. She had great success and her clients still speak highly of her. Her mantra was always the same and simple: calories in must be fewer than calories out; always go for daily slightly smaller portions of what you enjoy rather than quirky diets; and that slow but sure weight loss was the only effective way. She used to say, too, that exercise, whilst vital for health was not a good way to lose weight.
In terms of your own AF, mine is similar in frequency but my symptoms so far are easier to cope with, although my anxiety can be very high. I have been told to take an extra bisoprolol and let it pass as it is an illness that makes a person feel much worse than it actually is, all else being equal (i.e.that the heart is essentially sound).
Have you lost 10% of your body weight? I weigh myself in kilos but just looked at lb and I weigh 7stone 11lb which gives me a good idea of how much you need to lose. I can understand your disappointment if you have achieved the weight loss set for you. I can also understand why you don’t want to take another drug but considering how long it is likely to take to reach the 30 BMI target I think I would be willing to try it especially as bisoprolol seems to be known for causing weight gain. Maybe a change to diltiazem might help and I think that is something your GP can do.
I tried to access blood test results through the NHS app but I think my surgery had to send me a link and it was very complicated and frustrating. Fortunately I get copies of consultants’ letters by post.
snap.......finally got a "catch up consultation" that had been postponed twice over a six month period , down graded from an in person to a phone call , had a less than 15 minute conversation with a doctor .After a few questions where he cut my answers short he said right we will put you on the ablation list ............i had a letter about 8 month ago which said consultant had added me to the list. I asked him if a short conversation over the phone about a procedure was appropriate bearing in mind the cadio unit has not seen me for about a year and have had no check ups , blood tests to monitor the anti coagulant etc. After a pause he said "ok.....we will organize a blood test and have a face to face".........i am a big supporter of NHS and the people who work there but the current situation is very worrying and having never had a "procedure" of any kind makes me a little concerned. Broken Britain
You've had some good pragmatic advice given here. Losing around 7 stone is going to be a challenge if ablation is what you want but once you've picked yourself up over the disappointment you'll feel better if you have a plan. Have a look at the Micheal Moseley Fast 800 plan. Friends have used this and done well. There's plenty of good food to eat on this plan. Also - just a thought. Bisoprolol tends to slow our systems down because it's a beta blocker. It definitely affects the digestion in my experience. If you can get on with Flecainide you might find you've got more energy and that it'll be easier to take regular exercise such as brisk walks etc. Something to discuss with your GP.
My cardiologist would not offer meds especially flec without a scan on my heart to check for any abnormalities as that particular drug can cause other issues!
I understand. It is typical to have Flecainide with a rate controller such as Bisoprolol although there are other options e.g. Diltiazem. With the arthritis- rheumatoid or osteo? You really need a joined up approach between your cardiologist and other professionals. That way you could possibly come up with a decent med solution that works for you. In my experience it's down to you the patient to get them to join the dots!
I had a couple of trips to the pain management people. After LOTS of messing about and letters telling me tier 2 then tier 3 pain management were on the case it ended up months down the line saying they couldn’t do anything for me. I’d asked if they could do the newish procedure where they cut the nerves behind that send pain to the brain. I was told due to having Afib and had a history of pulmonary embolisms they wouldn’t do any surgery. They then went on to say that they wanted me to stop my morphine, pregabalin and amitryptiline as the ‘Nice’ guidelines said I shouldn’t be on them long term. (I’ve been on them years). So I ask what different pain relief they were going to suggest. The reply was co-codamol when you have a flare up. I laughed in their faces. A ‘flare up’. I’m in agony every day. I told them that their suggestion was ridiculous. They said they couldn’t do anything for my pain. I’m totally disillusioned with my doctors
I do sympathise with the loosing weight.I lost over a stone when my AFib became permanent.I am struggling at the moment to get rid of 5lb I put on after 3 months out of 6 in slightly warmer climate.Please do not self medicated.But I presume your doc supplies this.
As others have said I believe BB's can cause weight gain.
I was paroxysmal on Adizem (Diliatazim ) since first diagnosed with paroxysmal in 2017.It worked very well for 4 years.
No matter how difficult it seems you must try & do some or more excercise .
I to have arthritis and know it is very hard to start this.
Gentle excercise classes.In Leeds the local council do a health programme which goes through various levels.
Losing 7 stone I feel is unrealistic so I understand how bad you must feel.See your GP re medication & they might be able to point you in the right direction for excercise.Loose as much weight before your face to face and ask to be put on list for ablation as you will loose weight.
Thank you for understanding. 7 stone will never happen. I feel so disappointed and let down. One consultant says one thing and one says another. It’s hard to know which one is telling the truth. I need to be in the right frame of mind to be able to lose weight and as much as I’ve had this afib as a poke to do something I still can’t get there. I know for a fact you have to be determined to lose weight. I’ve struggled with my weight since my knees packed in. Had 1 replaced with great results apart from my 4th lot of pulmonary embolisms post surgery. The 2nd one was put off indefinitely since this. I’m not 15 years on after the 1st replacement. I struggle to walk very short distances since I had to stop taking naproxen (due to blood thinners). It’s all a vicious circle. I’m tired of it all. I’m 62 and just want to chill
Yes re frame of mind.I call it like having a switch that clicks.At the moment I am dieting 1 or 2 days then loosing it.but lost 2 lb of the 5 in 2 weeks.I found that BBs reduce anxiety.I could not feel much emotion or worry about much at all.
I will not take them
Loosing weight does help with AF considerably.
I need to practice what I preach & dig in.
Have a chat about meds
And in my case gentle increasing excercise can help with pain .Even seated excercise helps.
Hope you can see that I emphasize & am not preaching.
It is unfortunate that the first consultant gave you wrong advice about the amount of weight you need to lose to have an ablation. I think you need to look at your situation realistically. Firstly an episode of afib every 2 months is not that bad . I would be very happy if I could get my frequency down to that. At the moment they are coming every 4/5 weeks and I am not that bothered by them that I want to try Flecainide. You are obviously bothered by yours but are refusing to try a medication that might knock them on the head altogether. Several people here have had very good experiences with Flecainide. You say you need to be "in the right frame of mind to lose weight" but despite the afib can't get there. I know how hard it is to lose weight myself but nobody else can lose weight for us. " I'm 62 and just want to chill" sounds very much like you don't want to take responsibility for your health . If you want the ablation then you will have to jump through whatever hoops the NHS require. But you should also keep in mind that ablation is not always a magic wand . It might not work at all , it might only work partially. The consultant's advice about sitting it out was realistic. If you are not willing to take Flecainide even as a PIP then taking Bisoprolol to reduce your heart rate is sensible . If you do not take it on a daily basis then using it every couple of months during an episode is unlikely to sabotage any weight loss.
Please seek help for weight loss via your GP. You have a clear medical need. It’s not as if it’s for vanity reasons. Your history of pulmonary embolism will certainly be a consideration when weighing up your suitability for ANY surgery. You are entitled to be referred to a weight loss service and I truly hope that such a service is available in your area. You have the arthritis AND AF and that is more than enough reason for a referral. It’s clear that you need support for your complex medical needs, so don’t give up on advocating for yourself. Take care.
Flecainide and Bisoprolol are quite efficient in stopping or reducing episodes of AF. I would not consider a very invasive procedure like ablation, with a less than stellar succes rate, risk of severe complications and involving a high dose of harmful radiation, unless the AF episodes were so frequent and symptomatic that they completely ruined my quality of life. It that’s just me. All the best!
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Hi- I hate it when a phone consult is a let-down, but a year's wait must make it worse. Do you have a medical condition that makes an ablation extra risky? Didn't you say you had pulmonary embolisms after a surgery?
Different subject, just wanted to mention that for me, my first step losing a ton of weight was to give up sugar and all sweeteners. It was super hard for a day or two, though I allowed myself every other comfort. Then it started to get easier, and after about 5 days, my appetite was way down and healthier foods started to taste better. Sweeteners are just plain addictive. My goal was to get my bmi below 30 too, though it took a couple of years. My health did slowly improve over those years.
I know you said the weight loss isn't going to happen, I'm just saying it may be easier than you think and more worth it than you think, not just so you can get an ablation.
I’m really sorry you are feeling so disappointed. I haven’t had AF for very long but I’ve certainly experienced a roller coaster ride with it all so far. I’ve only seen a GP but I’m waiting to see a specialist privately. (There’s a 49 week wait to see someone on the NHS). I am very overweight and I have tried exceptionally hard to try to lose weight but, instead, I’ve managed to put on7pounds. I have tried to exercise more but, like you, I have arthritis in my knees. If you’ve got a good GP I’d go back and tell them how you feel. It’s so hard to keep positive when things are stacked against you but try to keep your chin up. Eventually we’ll lose the weight. We can do it a bit at a time. Good luck.
The decision is based on risk versus benefit and unfortunately your weight can potentially make surgery more risky. If at the moment you are having an episode every two months, it may not warrant having an ablation as this is relatively infrequently. On the other hand, I do know what it feels like and I know how scary fast AF can be.
Not all ablations will result in being permanently AF free for life, as many of the members of this forum can testify, and that’s something to consider when weighing up your risks versus benefits. One of the issues, as far as I can tell, is that you’ve just been left to “get on with it” without much support or explanation of how to manage your situation. I’m in a similar situation. From a cardiologist’s viewpoint, paroxysmal AF isn’t a big deal but to us it can be terrifying when you’re in it. It’s clear you need more support so please take advantage of the arrhythmia nurses at your hospital. In my experience they will ring you back and try to help and reassure you, and will advise you on your medication and so on. I know it’s not what you’d like ideally. but I do think you need a bit of extra support.
Thank you so much. Without sounding awful, this is the most understanding reply I’ve had. Yes I do get terrified when having an episode. I’m already prone to pulmonary embolisms (I’ve had 4 lots in the past) and I just wish I had someone I could contact instead of self medicating trying to control my Heartrate. So, thank you again. xx
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