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Atrial Fibrillation Support

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EP has told me that he would not refer me for an ablation

21 Replies

sometime ago I wrote my first post regarding an ablation for atrial tachycardia that I was put forward for back in October 2014 and whilst in the lab the EP consultant could not stimulate the atrial tachycardia so could not ablate it but, managed to trigger Afib which they could not stop even with cardio version but managed to in the end with flecainide that put me back into sinus rhythm because of this I was told the ablation could not take place . I was kept in overnight for monitoring and discharged the next day without any advice on meds or blood thinners etc. Because of this lack of care I wrote a letter of complaint to the hospital complaints department as there were quiet a few things that fell short of duty of care on that day .

This week months later I was asked to see the head of the EP department at Kings collage Hospital and, so I turned up for the appointment thinking that perhaps it was for my on going care, how wrong I was, instead I was told in no uncertain terms that I would not ever be offered an ablation by them and that I would have to manage the rest of my life on meds, when I asked why I could not have an ablation I was told that the AF that was triggered was too hard and difficult to put back into rhythm and would probably happen again and so their was no point and so I would not be put forward for an ablation again. Sitting there in shock I asked about blood thinners and this is what the consultant said to me that I would not need blood thinners until I am seventy (I am sixty six) and that I would have to keep trying different meds until I find the right one that suits me telling me that my heart was in good condition and that I would just have to go with it .

Obviously I grilled him more but it was just no good he wasn't going to budge, it felt like I had been thrown away. But he wasn't finished with me he continued that he was going to write to my doctor to advise of his findings and too refer me somewhere else. I did ask him if he was angry at my complaint and was that the reason that he was being so unreasonable but he just shook his head but, I could see that he was red in the face and his eyes were so cold when he looked at me that this was my punishment, well that's what it felt like . I am quiet tough and will do the best I can for myself and will obviously try and fight my corner because I am at a loss how he can make these decisions about my life. Has anyone else ever had such an experience as this or am I an isolated case. HO HUM where do I go from here.

Take care all you lovelies and keep writing those amazing post which have inspired me and kept me going as I never miss one.

flipflop66

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21 Replies

In terms of anger, yes. I've nearly had a punch up with a GP, a big Scotman. When I was in the waiting room, I could clearly hear everything that was said in the surgery, so I told him, I thought he would want to know (obviously). He went absolutely white and nearly exploded. He told me I hadn't heard a thing, I told him I wasn't going to be spoken to like that, etc etc etc!!! Anyhow, I walked out and he was clearly was not far off physical violence. He shouted at the next patient to come in, poor bloke!

I did get a letter of apology a few days later, and didn't reply. I just changed surgeries and got the most wonderful GP I've ever had.

Can you ask for a change / second opinion. You have a right to one (I THINK).

Koll

in reply to

Thank you for your reply Koll, I will have to go back to the drawing board as I have been left with nothing no meds no blood thinners just abandoned by this EP consultant I think because his pride has been hurt by my complaint .

which was rightly deserved and obviously by his actions towards me he just shows himself up, but I think it goes deeper than that this man sits on a board of EP cardiologist with the rest of the top draw and is obviously influential because when I mentioned professor schilling he replied that he was good friends with him so it seems that I have a battle on my hands on top of everything else but I will get there in the end after all this man is not GOD.

Keep smiling

flipflop66

Hello,

Please contact the Af Association tomorrow and ask for there guidance.

Regards,

Carol.

in reply to

Hello Carol, thank you for your reply I will do exactly what you have advised and ask for the AF Associations guidance as I just do not know where else to go. how refreshing it is to contact people who know all the pitfalls and hazards of this alien condition that we have to deal with and until these consultants some of which play God can walk in our shoes and know what it is to suffer this condition they really should not be so insensitive. I am so frightened at the moment because this stupid consultant has raised my anxiety level to an all time high because of his insensitive remarks. how he can live with himself beggars believe.

Thank you once again Carol for your support it means a lot to me.

flipflop66

Bryonny profile image
Bryonny

Dear flip flop, sorry to read you had a far from good experience. Have you considered asking for a second opinion?

I had a poor experience in hospital and asked for a transfer of my care which for me was one of the better choices I have made in my life! Hope things are resolved for you soon.

in reply toBryonny

Hello Bryonny, thank you for your reply, I am going to sit down with my GP and talk things over with him but, I just hope that he is not swayed by the letter he receives from the consultant advising him that I should never be put forward for an ablation if that does happen then I will have to go to the Honorary Doctors association to ask if they can help me, if not I will have to try and go private which at the moment seems my only option if I have the door of the NHS closed on me because of this consultant, however I will do all that I can to fight this and I am sure this cannot be right. maybe the media would like it, quiet honestly I feel that angry at the moment.

God bless keep smiling and thank god for this forum.

This is quite unbelievable. Do follow Caromias advice & seek guidance from the AFA. Disturbing to hear all this from a top London hospital. Keep us informed. Regards. Sandra

in reply to

Hello Yatsura, thank you for your reply, I will contact the AF Association for advise, but I am worried why this consultant should take such a hard line with me because I do not think that there is anyone out there who has AF that cannot be treated some way or another, but it seems I have even been denied blood thinners let alone meds so this surly is a breach of duty by a consultant who heads the EP department at Kings and quiet honestly I am as shocked as you and if my husband had not been with me I would have thought that I had dreamed the whole thing, at least he was a witness to what was said to me and as my husband is in a wheelchair there was not much that he could do in fact I think it upset him more than me at the time and the worry will have more effect on him than me although I have to admit my anxiety is at a all time high at the moment.

Thank you once again for your reply,

Keep well and safe

flipflop66

PeterWh profile image
PeterWh in reply to

As for coagulation (aka blood thinners) you can get your own GP to put you on tose. It does not have to be a consultant.

PeterWh profile image
PeterWh in reply to

I am just catching up on my emails following my CA last week and this one was issued by the AFA Monday last week. "Have you been denied an AF ablation?"

healthunlocked.com/afassoci...

in reply toPeterWh

Hello peterwh, I did see that post and have emailed Andrew outlining my story and, am awaiting a reply. Thank you for the reminder.

I just love the way people take care of each other on this forum. wouldn't it be wonderful if all was like that to each other in the world . Utopia, ah well one can dream.

Take care and keep well,

flipflop66

meadfoot profile image
meadfoot

What an awful experience. There is no way you should accept such treatment. Visit your GP as a priority and ask for a referral elsewhere, its your right. There are some wonderful EP's and you deserve the best.

Take care and stand your ground, find someone who will treat you with respect and devise the best treatment plan for and with you.

Be well

Dee

in reply tomeadfoot

Hello Dee, thank you for your reply, I do intend to go to war so to speak because this terrible shock has put me into survival mode coupled with anxiety which I am trying to control as I do not have the safety net of blood thinners or meds at the moment., so will see my GP this week to see where I can go from here. I think first and foremost some blood thinners but have to see a haematologist for that so the sooner the better.

Thank you once again for taking the time to reply it is very much appreciated.

Keep smiling

flipflop66

meadfoot profile image
meadfoot in reply to

Good for you. Yes anticoagulation is your first priority.

Dee

Therealsue profile image
Therealsue

Dear flipflop66 I think your treatment by this head EP at Kings sounds really unpleasant, especially as I would have thought that a large hospital like that should know better. If they triggered the AFib, why couldn't they ablate it I wonder. I can't really offer any pearly words of wisdom further than to feel very angry on your behalf and to agree with with the advice that the others have given. But I would say that you should definitely be on anticoagulants as a priority. I'd also do a bit of research on local good EP's - maybe the AFA can help with that. Good luck and let us know how you get on. Sue

in reply toTherealsue

Hello sue, I could not agree with you more why in deed did they not ablate it when triggered I always thought that is what ablation for this condition was all about , so I am as confused as anyone. As this is going to niggle me intensely I feel pressured to go forward and find more answers regarding this top of the draw EP consultant who sits on a board of cardiologist and some of this country's cream of EP consultants and find it hard to understand how he can make such decisions on my care. This man has written books with other EP'S on the subject of AF and the difficulties it can involve and what they can do about it giving anyone who reads these papers a very positive outlook which is in total contrast to what he said to me in his office that day. I have to ask myself what really happened to me in that EP lab that day for this consultant to want to desperately see the back of me.

it does conjure up all sorts of thoughts but, I will not let it go and will do all I can to see what really happened to me and approach it by the freedom of information act if necessary , however I will not hold my breath as to really getting to the truth many have been there and done that and are still no wiser.

My main priority at this moment is to get some blood thinners ASAP for fear of stroke which no one wants., and this is what I find the weirdest of all he would not prescribe any meds or blood thinners. Perhaps this is all a bad dream that I will wake from ( I wish )

Take care and keep well

flipflop66

jeanjeannie50 profile image
jeanjeannie50

Hi flipflop - It sounds as though going into your heart for an ablation triggers AF and your EP said it was difficult to get it back into normal sinus rhythm. I am guessing this is why he won't attempt another one which could leave you in permanent AF.

I think the way you have been treated is disgraceful and so upsetting. I wonder who they are going to refer you too, it could perhaps be to a more experienced EP!!

Are you still getting your episodes of tachycardia? If so you will almost certainly need some form of anticoagulation. Please let us know how this all progresses and the views of your GP.

Best wishes

Jean

in reply tojeanjeannie50

Hello jeanjeannie50,Thank you for your reply it is very much appreciated. It is my main priority at the moment to safe guard myself against a stroke and have made an appointment to see my GP tomorrow. I must say since that experience in the EP lab at Kings my symptoms seems to have stepped up a notch in as much as waking with fast heart beat and off kilter with dizziness, so god knows what happened on that day in the lab and now the eagerness to get rid of me , it will take a lot of unravelling by me but then again once the door is closed on you its hard to get through again, however I am not one to give up so easily . We all only get one heart which to all of us is sacra sanc so therefore no one has the right to mess it up. My thinking is do the job right or don't do it at all.

Take care and keep smiling

flipflop66

PeterWh profile image
PeterWh in reply to

Good luck and I am sure things will work out.

Well Dr Who has two hearts but that would mean double the amount of AF for us AFers!!!!

Dave1961 profile image
Dave1961

I am with you 100% on continuing to be proactive about your own health.

The more I read and find out the more I realise that dr's and specialists do NOT all know the answers but are loathe to admit it.

What bugs the heck out of me is that people like your healthcare "professional" act as though they can not be questioned or confronted about suggestions simply because they spent some time at uni.

Sorry buddy but WE are the ones that ensure you can buy your $1.000.000 house and put your kids through private education so how about a little respect?

I have been seeing a cardio who I feel has little investment in my health and usually runs two appointment simultaneously leaving me to think neither patient is getting 100% focus.

Anyway, just my 2 cents. Having read the pother posts I can see you have been given more advice than I could offer - just thought I would throw in my support! :)

in reply toDave1961

Hello Dave1961, thank you for your support and , I must say how right you are. This top draw EP consultant was arrogant and uncaring as he watched my face drop to the floor as he told me that he would never offer me an ablation or anything else but, I did come back at him and asked if my complaint had soured his judgement shaking his head without eye contact to me he said no but really I think he was angry that I dare bring his department into disrepute.

He does at the moment have the upper hand but we shall see, however not allowing me any meds or blood thinners I would think amounts to breach of duty and of cause he obviously feels he can get away with this. If this consultant who the public put their trust in can turn against you at a hairs breadth in such a callas way then he should not be doing the job he is doing, but I am the one who has come off worse with no medical support or medicinal safety net at the moment so I will have to put the armour on and go to war.

Take care and keep smiling

flipflop66

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