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Atrial fibrillation

Negative experiences of health care for atrial fibrillation

People with atrial fibrillation (AF) meet a range of health care professionals. While there is a great deal of satisfaction with the service and treatment people receive at times experiences of health care can fall short of expectations. We spoke to people about some of the difficulties they have faced.

Dissatisfaction with the system
Some people reported scheduling issues, including having to wait eight months to see a consultant for diagnosis, a 45 minute wait to see a GP while in AF, and insufficient consultation time.
 

Paul was frustrated by cancellation of appointments and the onus being on him to rebook.

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Age at interview: 57
Sex: Male
Age at diagnosis: 55
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There was a time when appointments were being booked for you. You received a letter to say, “Your appointment is on such and such a day.” And then what was happening after that, they changed the NHS, our local NHS here changed that system to where they would write to you nearer the time of your appointment. They would say, “You have an appointment in six months’ time. You ring in.” So the onus is back on to the patient, “And then you will be given a choice of various times and dates” and this would help with the patient picking a suitable time for them, convenient time for them and less time wasting that where people have missed appointments from the NHS point of view. Now whilst that sounds grand and you know very good in theory, in practice, what happens is, I’ve rung in last twice now and all I get is the one. It’s, “Oh, the only date we’ve got is this date.” And, of course, it’s no convenience for me because if it isn’t, then I don’t, you know, they haven’t got nothing else to offer me. So I find it very, it’s gone from… well… it’s supposedly making the thing better, simpler and easier. It’s just made it more inflexible and less good.
 

Janet’s appointment with her consultant was very rushed and she felt pushed through the system.

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Age at interview: 74
Sex: Female
Age at diagnosis: 74
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Well, she was running late. It was somebody that I’d never met. She was running late. I was over half an hour late when I went in. I don’t even remember her name. As I said, I thought I was going on the treadmill because that’s what my letter had said, “Give yourself time for this.” And I was just examined on the bed, ECG taken and then she just said, “Well, no, this isn’t angina.” If she said more than that, I don’t remember but it was very rushed.

Well, there weren’t treatment options. It was we’ll need to this, this and this, you know, follow-up tests and I know I know that the same day I had the chest x-ray and there was one other thing and I can’t think. And then the electrocardiogram and then I would need to go on warfarin and then I would need to have the cardioversion. I wasn’t really given time to say, you know, “You might like to have time to think about this.” It was, I felt just pushed just pushed me through really.
 
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George X felt that a ten minute appointment with his GP was insufficient.

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Age at interview: 78
Sex: Male
Age at diagnosis: 63
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The stroke lady told me that I ought to really go back because there’s a lot going on and see the doctor but, you know, you get ten minutes and you find that ten minutes is nowhere near enough to tell the doctor what’s going on. They will book a double appointment but they’ve got to sanction it rather than you ring up the receptionist and say, “I want a double appointment with the doctor.” Because you just can’t get it. It doesn’t work like that so you either take the ten minutes, take your luck.
Carin recalled being very frightened when her symptoms were being investigated in hospital, and asked unsuccessfully for some form of tranquiliser for her anxiety. Anne said that her experience in hospital was not satisfactory, having to spend eight hours on a trolley in A&E before being found a bed. She admitted being ‘far far more frightened of A&E than the attack itself’.
 

Anne described her experience after being told to call her GP when she next had an episode of AF.

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Age at interview: 71
Sex: Female
Age at diagnosis: 70
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When you’re feeling ill and you have to ring, and on this occasion, it was twenty three times before I even got a line, busy line, busy line, busy line. And then I got a line and it said, “You’re in a queue.” And then, when I finally got the GP receptionist, she said, “No, no appointments.” 

And I’m sure that could be tightened up quite a lot really but everything has to fit in with the systems that they’ve got already, whether they work or don’t work. This is the hospital, you know, procedure and this is what we do. And it often happens that, for example, you’ll you’re even discharged by the by the team by the consultant, and then you have to hang around all day for the pharmacy, as though your time was of no value. And I guess that is a feature of the NHS that, you know, you should be grateful that, it’s just an underlying ethos that this is a free service and you fit in with us. 
Poor communication, attitudes and care
Attitudes of consultants and their ability to communicate appropriately and effectively were central to people’s experiences of care. Some people felt that health professionals had dismissed their concerns with flippant, off-hand or thoughtless comments. Elisabeth X, diagnosed at age 30, recalled her ‘very nice and sympathetic’ GP sitting on her bed and explaining ‘that we all had to die of something and it was likelihood it would either be cancer, a stroke or a heart’. Glyn’s medical team failed to take into account how Glyn’s AF made caring for his special needs son more difficult. The surgeon’s dismissal of his concerns with the comment ‘Oh well, I’m only here to treat your atrial fibrillation. Your son is your responsibility,’ was disappointing.
 

Concerned at her low heart rate on beta-blockers before being discharged from hospital, Carin found her consultant’s off-hand comments unhelpful.

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Age at interview: 62
Sex: Female
Age at diagnosis: 55
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But I don’t think people understand what it’s like. One doctor said to me, the consultant, when I was in admitted the years before and my heart rate, I told you, dropped down to forty. And as he came on with these students or his young doctors about my bed so I said, “Well, my heart rate at night seems to drop that much that it goes below forty. I’m a bit worried about going home with that, you know.” And he says, “Oh” he says, “Oh, it doesn’t matter.” He says, “You just get out of bed and do some press ups.” You see? That’s the sort of thing. Because its benign condition, doesn’t feel benign to, when you have it [sniffs]. 
Some people we spoke to did not feel comfortable asking questions or felt that at times their consultants failed to treat them as an individual. Eileen felt patronised when at the age of 52 she was ‘patted on the head’ and told, ‘It’s your age. AF is one of those things – you have to learn to live with it - this is as good as life’s going to get’. Elisabeth X, recalled how she asked for a transfer to a different cardiac unit after tensions with her consultant. She described him as ‘an ‘old school sort who didn’t believe in telling patients what was wrong with them’ or answering their questions.
 

Gail felt that her cardiologist did not acknowledge her as a person.

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Age at interview: 62
Sex: Female
Age at diagnosis: 44
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I don’t think doctors have any sense of how you know, even something that could be seen as quite a minor procedure like that is like an attack on your body. I mean it’s mad if you think about it, you go and lie down on a table and you let these strange people stick things in your heart and, you know, freeze bits up and, you know, it is an assault on your body. And there was one point I remember the cardiologist saying to somebody, “What’s the weight?” Because they obviously wanted to know how much of some drug to give me and it was, it wasn’t, “What’s her weight?” It was, “What’s the weight?” And that just struck me as interesting, you know, what’s the weight of this body? [Laughs]. I felt like piping up, “It’s me, and I’m fifty eight kilograms.” [Laughs].
 

Mary, a woman in her eighties, hinted at ageism.

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Age at interview: 84
Sex: Female
Age at diagnosis: 84
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I can’t say that care-wise, I’ve seen much care. Really. It just I, you know, this impression [coughs] and I think when you are old, you say, you know, “Oh, well. She is old and she’ll.” I get that impression sometimes.

What gives you that impression?

Well, there hasn’t been any follow-up or anything. No suggestion of seeing a cardiologist again. I mean I saw one for a few minutes, one in May my GP is sort of, if I go with something, you know, tries to but I mean I don’t often go to the GP either unless it’s. I mean he was very good. A couple of weeks ago I was feeling dizzy and I started this cough again. Actually, I was I was bringing up all the meals with coughing. So I just said, could I speak to him on the phone, when his when they put him on he said, “I’m I’ll come round and see you and chest, and check your chest again.” I was quite grateful, yeah, but I mean of course, they’re very busy people as well. No, I no, I’ve not really been impressed with the with the treatment.
 

Maggie felt her cardiologist did not fully explain the procedure before her ablation. She wonders why she did not ask questions.

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Age at interview: 70
Sex: Female
Age at diagnosis: 61
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He didn’t explain it. I don’t think it was explained to me fully but from the other point of view, I also found it very, very difficult to speak to the cardiologist and converse with him. My appointments were very much one sided. I would sit and be told by him and I would say, “Yes, that’s fine. You do this, do.” But there were no questions from my side until I came out and then I would think, “Why didn’t I?” “Why didn’t I say this? Ask that.” Whatever and I still knew nothing about it. There were no support agencies that I could find at that stage. 
Unhappy with the service he was receiving at the hospital, Martin adopted a proactive stance by asking his GP to refer him directly to a particular consultant who was considered ‘the best man in the country’. Chris X said that he lost confidence in the specialists at his local clinic and decided to stay under his GP’s care. In retrospect, he felt he was put straight onto a ‘blunderbus’ drug rather than something ‘more benign’, and that the consultant was a ‘war horse’ who dictated his treatment to him. Lack of a full explanation or prognosis, an ablation which failed ‘because they’d left it too late’, poor follow up and monitoring after surgery, and a feeling that ‘they don’t want to know’ when calls to the hospital for advice went unanswered, left Glyn feeling frustrated and uncertain what to do. He described himself as ‘just a name and a number’.
 

Paul was looking for advice when he tried to discuss information he had researched on the internet with his consultant. He felt he was seen as a ‘bit of a know all’.

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Age at interview: 57
Sex: Male
Age at diagnosis: 55
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I think they do, you sometimes feel that, “Oh, yeah, you know. Here we are. A know all. Bit of a know all here. Knows it all.” And I sometimes think they do feel that way, GP especially, not so much the cardiologist I think. And I would have thought they would have appreciated somebody who’s more read up read up on it than somebody who goes there completely not knowing anything about it I think. But they I do feel they feel a bit condescending to you. You know, I think they do feel, “Oh yeah, you know. Okay. No… I that’s my job. I’m telling you what, what things are.” But again, I go off I often go there armed with, you know, whatever and I tell them and say, “Well, look. This is what I’ve read. How much truth is there?” So I actually quiz them for the required answer.

I’ve come away from there thinking, sometimes I have thought, well, you know, I’m here for advice rather than, you know, him allowing me to do the driving, be in the driving seat. Because, at the end of the day, I’m not a hundred per cent certain and it’s only information that I’ve perhaps got from the internet I think, that’s enabled me to have a conversation with him and then sort of say, “Well, what about this and what about that?” But I don’t think he’s ever quite a hundred per cent coming to me and saying, “Well, there is this treatment. There is this treatment. There is possibly this.” 
Some people felt they had not been fully informed about their condition and its risks. Freda would have liked a ‘definitive answer’ as to whether her AF would deteriorate as she got older. She would have preferred an honest discussion with her cardiologist. Some said that they had not been told that they were at increased risk of stroke due to their AF, instead finding out by doing their own research. On reflection, Geoff is ‘not sure they even mentioned stroke’ when he was diagnosed nine years ago.
 

Anne does not recall any discussion about stroke risk.

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Age at interview: 71
Sex: Female
Age at diagnosis: 70
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No, I don’t think they’ve discussed it at all, any of them. I mean I know, you know, I know, from what I’ve read and what I’ve learnt at these conferences, that you’re five times more likely to have a stroke than someone who hasn’t got AF. But I think the input of warfarin at the correct dosage reduces that down almost to nothing. I don’t think there’s very much difference if you’re on the right dose. I suppose they’ve got the idea that this woman is going to ask questions and you know, I was a medical social worker so I know a bit. But I don’t think anybody has really suggested that, you know, that I’m more or less likely to have a stroke than another AF sufferer or what those implications would be.
 

Raymond would have appreciated knowing that he might pass out or need a pacemaker so that he could adjust his lifestyle.

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Age at interview: 78
Sex: Male
Age at diagnosis: 64
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Yes, I’d like to have known I’d like to have known what I was liable to fall foul of like passing out, like needing a pacemaker, like anything else that maybe I mightn’t take but possibly, I could I could have taken. I mean I don’t know. I know well, I don’t know actually what I’m talking about because I don’t know if there is I don’t know if there is any. It may be that there isn’t sufficient but nobody said to me at any time, not even my own doctor, who I had, as I say, respect for very, very much, nobody said to me, “Be careful, you might find yourself, the heart stopping a wee bit.” Nobody ever said that to me and I had had I had had I had a monitor fitted for twenty four hours but I never had any problem during that particular twenty four hours. And I was just lucky enough in a way, I suppose that during the overnight they detected the problem and everything then was pushed into place. But if I’d have known then, if I’d have known then what I know now and for the months beforehand, I wouldn’t have been driving, definitely not driving.
Some people reported a negative reaction from their consultant when they refused to follow their advice. Mary’s cardiologist was ‘quite pressing’ in suggesting she have cardioversion to control her palpitations. Deciding against the treatment, Mary described how he ‘lost interest because I wasn’t cooperating’. Others felt they were given little choice in deciding on their treatment.
 

Dave’s doctor offered him cardioversion to treat his AF. He seemed irritated when Dave refused.

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Age at interview: 61
Sex: Male
Age at diagnosis: 50
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He [consultant] did offer to stick electrodes in my heart and try and knock it back into sinus rhythm. But when I asked about, you know, “What’s the chances of it staying like that?” I found out that because it was more than three months since I’d had the onset and because I was over forty five, the chances of it even reverting to normal rhythm were less than fifty per cent and then, even if it did revert, there was a very strong probability, probably about ninety per cent it was going to go back to atrial fibrillation within two years. So given that the cure involved warfarin and having to have my blood tested almost daily, whilst they checked I’d got the warfarin dose right, this was going to be seriously inconvenient because I was always travelling around a lot as a consultant engineer and the chances of it actually doing anything useful seemed so remote that I just said, “No. No, thank you very much.” 

No, no as I say, the consultant seemed to be more he seemed to be almost irritated or upset about the fact that I was refusing the let him poke me. But it’s one of the things, you know, sometimes consultants seem to be more concerned with their profession than their patients but, yeah, anyway.
 

Mary remembered being put on warfarin without discussing alternatives.

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Age at interview: 84
Sex: Female
Age at diagnosis: 84
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No, I don’t like it. I feel like I, I wish other, I say they didn’t give me a choice but maybe I wasn’t, I was sort of semi-conscious and didn’t know what I was doing but I have a feeling they just said, “We’ll put you on warfarin.” I don’t think there was any, “Would you like to go on warfarin or not or there is an alternative?” No, I didn’t take didn’t get that at all. I thought that annoys me because I really would like to be in charge of my own body.
Treatments did not always take into account pre-existing health conditions. Eileen was ‘not particularly impressed’ at the impact of a change in medication on her blood pressure. Roger was told that, in addition to AF, he was also showing some symptoms of chronic fatigue syndrome but that further investigations into this could not be conducted until his AF was ‘under control’ or cured. He felt that this was unfair given that he had been experiencing AF for ten years and that it was not at that point under control.
 

Jo, a breast cancer patient, felt that her concerns about AF were deprioritised. This added to her distress.

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Age at interview: 64
Sex: Female
Age at diagnosis: 53
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[After the doctor aspirated fluid from a seroma, a build-up of fluid after surgery] I was feeling very weak. I couldn’t stand up. My head was spinning. I was sweating and I could feel the palpitations. It was as though my heart was jumping out of my chest cavity and the doctor said to me, “We’re not worried about your atrial fibrillation. You’re on atenolol. You’re on warfarin. You can go home now.” I said, “Please give me a medical referral because I feel really bad.” He says, “Well, you can stay overnight but you will be discharged in the morning.” 

(While waiting for surgery for a tumour in my right breast) I went to see a cardiologist and he said to me, “I’ll increase your atenolol but”, he said, “your atrial fibrillation is the is the least of your problems right now. You’ve got to deal with your cancer.” So I was facing more major surgery but this time I was in atrial fibrillation and I was quite frightened actually, very frightened. 
 

Recently diagnosed with AF, Janet is uncertain about taking warfarin because of a pre-existing medical condition.

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Age at interview: 74
Sex: Female
Age at diagnosis: 74
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I know that it can cause fairly excessive bleeding if they don’t get the levels right and I also have another medical condition that if I if I did bleed a lot it would give me a lot of concern and because that’s sort of in remission at the moment and I’m feeling quite fit and healthy, in a way, I’m quite reluctant to disturb all that. 
Freda was disappointed to have been discharged by her cardiologist, even though she felt her AF was not completely under control. She felt she would like occasional monitoring rather than being discharged completely. Geoff found he struggled with the lack of continuity in the specialists that he saw, and that there sometimes seemed to be a lack of clarity in what they said. He felt that AF was not fully explained to him in terms of people’s varying severities and symptoms, and possible treatment options. Martin, whose sister also had AF, expressed shock at her GP’s lack of knowledge of the specialist role of an electrophysiologist. He felt that this showed a lack of current awareness of AF and referral and treatment options.
 

Richard thought he would see his consultant more frequently after his diagnosis. He finds that his own knowledge of his condition exceeds that of his GP.

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Age at interview: 56
Sex: Male
Age at diagnosis: 52
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I naively thought, “Well, I’ll be getting a, once a year I’ll go in for some kind of check-up.” And that, you don’t get that. There’s none of that unless you push it and then when you go and see the GP, the treatment appears to be fine, you get diagnosed, you get the medication agreed with him and then from then on your GP essentially, is the guy that you see. But you kind of feel like, when you do a bit of reading and you’ve actually got the illness or disease or whatever you call it, you kind of feel quickly that you probably know more than the GP does really. I mean when you think what he’s got to deal with, you know, that one illness, you know, he runs rapidly out of his knowledge zone.
Problems living in isolated areas
Living in an isolated area or being away from home could be challenging. When having an episode of AF while on holiday in Wales, Geoff said that staff at the A&E department at the local hospital were unsure how to treat him, which subsequently led to anxiety about being away from his local hospital.
 

Elisabeth Y, who lives in the remote Shetland Islands, spoke of the difficulties she faces getting treatment.

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Age at interview: 69
Sex: Female
Age at diagnosis: 63
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The appointment was at two fifteen and the boat home sailed at five. You’re meant to be on board for half past four and they took their time over the ECG and then they made me get dressed again and then they took their time over an echocardiogram and then I finally saw the man about the time I should have been climbing on the boat, you know, and I said to him, you know, “I’m going to miss this boat.” And he just looked at me as if I was making a fuss over nothing.

And because I live in Shetland and because no cardiologist ever comes to Shetland any more (they used to come), despite the fact that heart disease is the biggest killer of both men and women in the UK at the moment, I have to jump up and down. I have to write letters to our MSP, (that’s the member of the Scottish Parliament because health is a matter totally devolved to the Scottish Parliament), and a copy of that letter to the General Manager of the Health Board.
 

Jo, who lives in a village, spoke of the challenges of finding care in remote areas.

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Age at interview: 64
Sex: Female
Age at diagnosis: 53
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I would say that where I live I feel isolated and so far away from specialised healthcare and I feel that that in itself is really a disadvantage. I would rather be near good healthcare rather than, you know, be miles away from it and have people that are geared up to deal with this condition and that have an interest in it within easy access. That’s how I feel and I feel that if you don’t make the move while you’re able, you might come to the stage where you’re not able to move at all.

So I feel we’ve got to do it now where I feel safe, where I can trust people, where I’m at ease with the care that I’m getting, not to have to go along and beg almost and then to be told to go elsewhere, you know, “there’s nothing we can do.” There’s always something that can be done.
(For more see ‘Positive experiences of health care for atrial fibrillation’)
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