My experience of ablation

Having a radio-frequency heart ablation at The Liverpool Heart and Chest Hospital has ruined my life. I had an ablation for benign ectopics when I was in my 20’s. I went into the ablation with benign ectopics and I came out of the ablation with a permanent and severely disabling heart condition, caused by the ablation. I have been told by consultants that this post-ablation heart condition is also likely to cause cardiomyopathy, left ventricular dysfunction and a significant reduction of my life expectancy. I have now developed even further illnesses as a result of the ablation.

I am a highly qualified professional young woman and what has happened to me has had a significant and detrimental effect on all aspects of my life.

I was fully conscious during the ablation and I have been left traumatised by what was said and done during the procedure on my heart, a procedure which resulted in my ending up with a horrific heart condition. The incidents were disturbing, shocking and appalling.

The Liverpool Heart and Chest Hospital encouraged me to have an ablation for benign ectopics and provided me with categoric assurances, saying "nothing goes wrong at this hospital" and "even if the ablation is not successful, you will not be in any worse a position after ablation than you were in before". I was never warned, either verbally or via the consent form, about even the slightest risk of developing any other arrhythmia or any heart condition, let alone one with such dangerous and distressing symptoms. Had I even the slightest idea of the horrendous state an ablation would leave me in I certainly would not have ever even contemplated having the procedure.

I made a formal complaint to the GMC about this hospital to try to ensure that what happened to me would not happen to anyone else. The manner in which my complaint was handled was atrocious and proved that the 'investigation' was a total farce. After causing numerous, significant delays, they then chose to simply ignore crucial and extremely serious incidents and provided a ridiculous attempt at a response in relation to other incidents. Within their response, they also decided to blatantly ignore the independent medical report from an electrophysiologist which was attached to the complaint and which categorically set out the breaches of GMC codes of practice.

The consultants have treated me utterly appallingly since causing this serious and distressing heart condition which I have now been suffering with for 5 years. The consultants have admitted, in writing, on numerous occasions that the heart condition they have caused me to have is a horrendous condition to suffer with. However, because I complained, they have gone on to make me even more unwell, have totally refused to arrange genuine consultations and have refused and avoided to do the most basic and crucial heart monitoring. In fact, they have gone to extreme lengths to avoid at all costs having to see me. They have refused/are refusing point blank to arrange echos for me (despite previously telling me how crucial regular echos are for my post ablation condition and despite knowing that my heart condition is deteriorating) and have refused to monitor my condition with basic ECGS. They have even cancelled and messed about with appointments, refused to have my medical notes available and simply ignored very important correspondence.

The conduct of the the consultants and those involved (which includes breaches of my confidentiality) and their correspondence has exposed their dishonesty and their desperate attempts to protect themselves regardless of the implications on a very unwell patient. Their correspondence contains numerous and blatant lies and totally ridiculous and elaborate excuses, repeatedly contradicting themselves and forgetting the lies they have previously put in writing.

I initiated a medical negligence claim and was forced to withdraw it due to the astonishing and underhand conduct of the medico-legal electrophysiologist experts that were involved. This is a separate issue and one of very serious concern. The Liverpool Heart and Chest Hospital, in their desperation to cover up what they have done, are trying to use the fact that I was forced to withdraw a negligence claim as yet another excuse for them not to comply with their basic duties in respect of the heart condition which they, themselves, have caused.

This hospital have admitted, in writing, that the ablation caused my current heart conditions and suffering, that the incidents that took place are serious, that my post-ablation heart conditions have horrendous and debilitating symptoms and they have said that there was a ‘complication’.

However, they are also using the fact that I did not pursue a negligence claim as an attempt at another desperate excuse to refuse, point blank, to admit what the 'complication' was and discuss with me the very serious incidents which took place and which caused the damage to my heart.

A patient is entitled to an explanation when they have been left with a horrendous and dangerous heart condition and after the NHS have told them there was a 'complication' relating to a procedure on their heart, which caused this condition. Whether or not a patient pursues a negligence claim is totally irrelevant.

The Liverpool Heart and Chest Hospital have recently written to me telling me categorically that they, the hospital who have ruined my life with an ablation, will never tell me what the ‘complication’ was or even discuss with me any part of my ablation. This is despite my being fully conscious during the ablation and aware of the horrendous incidents which occurred, and despite other consultants that I have seen providing their clear written opinions on how the ablation caused my condition'.

wal.1980@hotmail.com

21 Replies

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  • I am so sorry to hear of your terrible situation but have to say I'm not surprised. I have just been referred to the same hospital via my Cardiologist at Broadgreen, to 'discuss' Cardiac Ablation. A procedure that I have so far refused to consider for the past 4 years. I agreed to see the Cardiologist/Electrophysiologist there to ask only 1 question - how successful are you at performing Cardiac Ablation on a patient with Ventricular Tachycardia? If his answer is less than 95%, then he won't be coming near me!

    I actually already know the answer to that question because I have already been informed, after much pushing by me, that they cannot guarantee success & in some circumstances your heart condition can be worsened & this is important information that ALL Arrhythmia patients should receive BEFORE having such a dangerous procedure. Unfortunately, 'no guarantees' is not good enough for me! Nobody is lazering my heart while I am awake for it to either not work or make my heart condition worse! I have struggled with my condition since diagnosis because I am still symptomatic & don't tolerate the medication well at all. I couldn't cope with a fail or worse!

    None of the information I researched was told to me by my Cardiologist or nurses - I have had to find this out for myself & then inform them that I am aware! They don't like it but it's my body & my heart & I will decide based on all the information I have gathered. People can only make a safe decision when they are informed & that's what patients should push for. I need the truth & it took almost 5 years of 'pushing' before I actually got the answers I needed, which is disgusting because I may have decided to have Ablation sooner & regretted it!

    Thank you for posting this because not all Cardiac Ablation stories are good or successful... in fact I don't know of 1 person that has had a successful result! Your experience has just confirmed what I always knew - that it is a dangerous procedure that needs to be perfected & have guaranteed results (within reason of course!) before administering.

    I do hope that you will find a good Barrister to look into this matter for you & offer some advice.

    I myself will definitely not now be having Cardiac Ablation!

    Debs <3

  • I'm one. But it was a catheter ablation. 100% successful in my case, so far, a year later. However, I'm learning my case may be the exception rather than the rule. I had been in persistent afib for several months, with no success from meds nor cardioversion before first and last (so far) ablation.

  • I am so pleased that you have had successful results & that is what I would hope for too.

    I am not so certain though for me because I am a logical thinker & as they haven't been able to rid me of my symptoms with meds & I have followed their strict instructions about changing my lifestyle - no alcohol, smoking, stimulants, coffee, tea etc... I am not so sure that surgery that's not guaranteed will work either! I've done everything I can on my part, to take care of myself but it's a shame they don't want to care for me in the same way!

    I just don't think they have perfected the procedures for the many different arrhythmia's that there are. I also don't think they are fully prepared for failures & the serious consequences that go with the 'fails'. Although no surgery is guaranteed & things can go wrong (it happened to my Mum, as she wasn't a 'text book' case), they should be very clear on the consequences of that happening.

    Personally, I don't think any procedure should be carried out on a 'hit & miss' basis or on a 'wing & a prayer'!! It should only be done if they can be sure they will cure the Arrhythmia or not at all. Simple as that really.

  • My brother, with paroxysmal, but much more debilitating afib, required three ablations to get a livable result, and still needs flecainide. Same doctor. It is so completely different for each case, and I'm so sorry yours has been so devastating. As you say, so many different arrhythmias, and apparently so many different approaches to it. It sounds like yours was relatively unproblematuc before the botched ablation. I'm in the US so unfamiliar with the health system (though "thanks" to Obama, we're headed the same way) and what it takes to get redress for medical mistakes. I hope you can find the help you need, Rainbow.

  • Oops, I mixed you up with original post. I see you haven't undergone procedure yet. If you can manage with symptoms, by all means, go for it. For some of us, you could hardly call it living, and after trying all the other options to reduce or eliminate symptoms had failed, the ablation procedure was the final option. I'm grateful for my successful result, but recognize it could have gone otherwise. You don't mention your age, and that's an important factor, as well. I hope you can go many years without requiring it, just to have any sort of life!

  • No, I haven't had it yet! I wish I could come over to the US for the procedure in all honestly because I know you have been using it for a lot longer than us here in the UK & you have 'specialists' who specialize in just that procedure alone (I think?!). Here, they are 'men/women of many talents', so to speak! That's never a good sign & sometimes I think when you pay for your treatment, it's tailored to you & not generic.

    I am still symptomatic & taking Flecainide, with odd AF episodes as well as Ventricular Tachycardia. I was diagnosed 5 and a half years ago & am 48. The lack of support in the UK for people who suffer from Arrhythmia's is appalling too. Just my experience!

    Maybe if you'd had it done here in the UK, your story may have been different! I just wish someone would say that I could have a successful ablation & I'd be the first one in the operating theatre! :)

  • Yes, the ventricular issue is a different one altogether, I believe. My doctor is an electrocardiologist, specializing in heart rhythm, but as I read posts on this site, you have access to those in the UK, as well. Maybe time to get a referral...or whatever it takes there. Interestingly, because I'm on Medicare here with secondary insurance through my husband's prior military, the entire bill was paid by the government, too. From a bill of $67,000+, however, both insurances paid only $12,600, and that's what they have to accept. We have a pretty broken system, too. People without insurance are stuck with the whole thing!

  • i shall leave this short,its pretty much a simiar siuation tho i had a second bypass and possibly didnt need it,no hospital wants to know,im passed from pillar to post n vice versa

    im a dithering wreck,even the part of my notes went missing after my bypass

    i used to work in medical records and was often asked to destroy notes of"complaints or complicated" cases.

    I had the bypass now im poss left with one artery graft but no native arteries yet they wil not converse about he situation.

    Ive complaned in a 12 page letter and got one paragraph saying the consultant acted proffessionally,that was it.i tried to sue but no solicitor wanted to know.

    im left feling afraid and very angry with a consultant that wouldnt even speak to me for the 6/8 follow up appt.It was supposed to be a nother artery pass graft,and evn he said he wouldnt do it if it wasnt an artery graft,,I awoke from the op to find no numbess or pain on my right handside as the otherside was when i had 1st bypassin 92.btw 2nd bypass was done in 2007,and out of the three vein grafts only one took,If i had known the mamo wouldnt used i wouldnt have had the op ,and not with a surgeon who had only done 7 bypass ops..he was quiterude and insistent i had it,but very sarcastic when he said go and get a second opinion as ,his words im excellent at my job!

    After my 1st bypass by mr campbell,i got PE.but when i went back for review,he said it wasnt,,,I spent 5weeks in arrowe park and clatterbridge hospital trying of rid of the clots.

    there are bad consultants and good i GUESS?

    My bypasses were done at wythenshaw,and my 10 pacemakers .8 of which were infected@Broadgreen hospital........

  • I'm so sorry to hear the last three posts and the difficulties that you have all encountered. I do, however, feel strongly that a balanced viewpoint should be presented on this site so that readers understand the pros and cons of opting for an ablation procedure. In my case the procedure was a success and resolved the root cause of my experience of palpitations. I appreciate that not every case will result in success but, given the research, it is important that people do not dismiss this procedure. Speak to your Electrophysiologist and speak with friends and family of the risks of the procedure and the risk of continuing with an arrhythmia. I'm sure each individual will reach an answer that will suit their own individual needs.

  • My best friend died after an ablation,we met on the ward wen he was 21 n I was 32,both having our 1st bypass,,we became firm friends,he wasonly 40 and they guaranteed nothing would happen detrimentally,,i wasn't going to post this but there is a lot of hiding and faults and errors in the nhs!

  • I am now in a quandary. I have just been referred to the Liverpool Heart and Chest Hospital and have my first appointment next month. I thought that it was a good hospital with a good success rate.

  • Thank you to everyone who replied. I have not been on here for a while, hence the delay.

    I am very sorry to hear of other people's awful experiences.

    I am now in a horrendous situation. Due to the fact it was the NHS who caused my horrific medical conditions, they are now refusing to help me, leaving me seriously ill.

  • That's awful treatment cowards. What damage have they done have they damaged the a v node or other electrics of the heart . I had a rough time after my first ablation . Who at Liverpool was your e p . Good luck God bless

  • Thank you for your message. I am now extremely unwell and the NHS are refusing to help me. Where did you have your ablation? How are you now?

  • I had it done at Blackpool twice first time I took a last minute cancellation and I don't they prepared proper as they never had any 3 d imaging to help locate my svt they could not find it and gave me a lot of burns and sedation suffered stomach swelling and heartburn and bad palpitations for months after so I decided to slowly get myself fit again fast walking exercise lots of health smoothies to help my stomach issues made my own super smoothies with. Walnuts live yoghurt etc. lost a stone in weight and got ready for my second ablation which so far so good I prayed everyday for that second one to work I ve had a few fast flutters etc which are quite unnerving also stomach bloated again and heart burn and indigestion but doctor says it was successfull and heart will take a while to settle and heal .who was your e p at Liverpool surely they need to help you what was the damage they did was it AV block or valve damage very strange what's gone on 

  • I can't even begin to explain how awful the ablation was and the state I am in now. My email is wal.1980@hotmail.com if you want to email me 

  • I prefer health-unlocked I just think medical negligence claim would be justified I got a medical negligence claim for a procedure ten years ago . Solicitor took it on a no win no fee type and you may get private health cover for investigative procedures included in your claim sounds very suspect to say the least good luck . I think a good solicitor would be best or maybe ring the news papers or other media outlets TV etc to bring to light these failings . I d go to the media and shout as loud as possible if I got shafted like good luck keep fighting .this morning or Jeremy Kyle the newspapers all these avenues YOU CAN USSE to name and shame I KNOW I WOULD . All the best 

  • I know. It is so awful.

    Being seriously ill and having the NHS simply refuse to help me because they are the ones who actually caused me to be so ill is horrific.

    The Chief Executive of the hospital I was recently referred to has actually written to me to tell me that his hospital will refuse to help me/investigate my condition and this has been said to me as a direct result of my letter to him, which merely raises legitimate and very serious concerns.

    It is beyond belief that, after the NHS have caused me to be so dangerously unwell, the Chief Executive of the hospital I was recently referred to has told me I cannot go to his hospital again and he has even told me that he has decided to write to my GP to confirm the fact that they are refusing to help me! This is all because I raised my genuine concerns with them.

    The Chief Executive has even said this to me despite knowing that the surgeons who work for his own hospital told the senior consultant who also works at the same hospital (who I had seen 4 months previously), that investigations should have been arranged for me.

    I had already said that, due to their conduct, the numerous lies they had told and their flagrant and blatant serious contradictions in writing, this hospital clearly could not be trusted. However, the Chief Executive wanted to make a point of telling me that it was his view that his hospital were not going to ever help me with my serious medical condition.

    My correspondence to him had specifically asked him to address only three issues which had taken place months previously. However, instead of actually dealing these serious issues, he decided to take my correspondence as his opportunity to tell me he would be writing to my GP to ensure his staff did not help me. This is utterly disgraceful conduct.

    His letter also clearly lets me know that, despite my referral to his hospital, he has no regard whatsoever for my extremely concerning medical conditions, let alone have his hospital actually help me.

    The reason I had raised my concerns was because his hospital were already refusing to investigate my symptoms. They had refused to investigate my symptoms for months, refused to acknowledge my symptoms in writing (and, instead, fabricated symptoms) and were behaving in a very peculiar manner in respect of my referral. Therefore, the content of the Chief Executive's letter merely confirms that they had always been refusing to investigate me because I had made a previous serious complaint to the NHS about the ablation.

    The Chief Executive telling me that the staff at his hospital will refuse to help me is even more appalling because the consultants at his hospital have actually taken over all of the hospitals within my area - they effectively deal with all of the patients in my area who are referred to this particular department.

    It should be my decision which hospital I go to. I certainly should not be denied any help whatsoever just because I raised legitimate and serious concerns. I would not be so incredibly unwell had it not been for the NHS.

    In fact, since I complained about the ablation which I had 6 years ago, the NHS have refused to help me.

    Even after leaving me with a horrific heart condition, the electrophysiologists have spent years refusing, point blank, to let me have a simple echo of my heart to monitor the condition they, themselves, caused. They have also tried their absolute best to refuse to arrange basic holter monitor ECGs after leaving me with a horrific heart condition. The content of correspondence they have sent to me over the years is beyond belief. The NHS have been refusing to help me, lying repeatedly and obstructing my care ever since I made a legitimate complaint years ago about what happened during the ablation.

  • I am so sorry you had this problem. I was supposed to have an ablation this April. My doctor said I do not need it at this time. I was happy to hear that.

  • Thank you for your message. I hope you are well 

  • Thanks. I am doing well.

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