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Atrial fibrillation

Positive experiences of health care for atrial fibrillation

Diagnosis and on-going treatment for atrial fibrillation (AF) brings people in touch with a range of health professionals, including GPs, consultants, electrophysiologists, arrhythmia nurses, and paramedics. We asked people to talk about the positive care they have received. 

Broad praise for the NHS
People spoke warmly of the care they had received from the NHS. James described his treatment ‘by the whole NHS’ as ‘absolutely wonderful’. Martin summed up his care as ‘outstandingly good’ and said that he would not have chosen to have private treatment even if he could have afforded it. George Y congratulated the NHS and his cardiac team, saying that ‘They have taken me as priority. They haven’t side-lined me. They haven’t made small of my case.’ Vera said: ‘I know lots of people grumble about the NHS but I have nothing but admiration for them’.
 

Dot called herself a ‘walking advert for the NHS’.

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Age at interview: 64
Sex: Female
Age at diagnosis: 55
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The NHS has been fantastic to me. They were fantastic from the very first moment, when I went into the clinic for the ECG and I was, it turned out I was having AF and they called the cardio person down. So that was huge caring years and years ago, and this summer, they have been fantastic. The NHS has been just awesome in the way that it’s looked after me because I was having, I had pains as well. You know, I had God knows what they’re from, I don’t think anybody has found out. They suggested it was indigestion last time, which is not true, because they happen randomly and at any time and, actually, they’re much less now. I seem to be sort of more stable again. So goodness knows what was going on, but so people were trying to find out what it was. So I had lots of tests on my heart to make sure it was working as well as it could. So I’ve had stress tests and echoes and I had an angiogram and all that kind of stuff. So really explored my heart. I must have the most well tested heart in, you know, the South of England. And I thought that was fantastic. At every stage, people are very caring, explain to you what’s happening and why they want to do the test and what the test involved. So the NHS could not have a happier more satisfied customer than I am, at the moment, and I think people should just realise the value of the NHS, what it is, you know, just amazing, amazing and free. Just amazing. So I’m a walking advert for the NHS at the moment.
 
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Gail is very happy with the care she has received and is a ‘total supporter’ of the NHS.

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Age at interview: 62
Sex: Female
Age at diagnosis: 44
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I’ve been very happy with the care and very grateful that it’s there. You know, at the moment, with the changes in the NHS and I’m very aware of the you know how the American system and systems in other countries work, which aren’t publically funded, and I’m just so grateful for the NHS, and I am a total supporter of the NHS, and will fight to protect it in its current form because, you know, it’s a, you never know what’s going to hit you in life. It could happen at any time in your life and this financially would have been a huge thing for us if there hadn’t been a publicly funded (service).
People spoke of being ‘lucky’ to live in areas which offered good services for people with AF. Jenny found that the staff in a small local hospital were sensitive and supportive of her during her husband James’ treatment for a stroke. She did wonder however whether people might get ‘lost’ in a bigger hospital ‘if you were really elderly or if you didn’t have anybody to speak up for you’.

Praise for the cardiac team
Eileen was impressed with the efficiency of her cardiac unit; a centre of excellence where ‘everything is discussed with you and they do diagrams to show what they’d done or what they would do’. Similarly, Elisabeth X acknowledged her cardiac unit where ‘there’s always someone who’ll talk to you and who you can ask questions’ regardless of how busy they are. Glyn, who experienced problems after having a pacemaker fitted, described his relief at being able to go back the same day to have it checked. Ginny talked about the ‘very professional’ care she had received. In praising her cardiac team, she said, ‘I wouldn’t swap having had AF because I would have missed out on meeting some very professional, charming people who have altered my views in life on a lot of things’. David X described how staff involved him by explaining readings on his heart monitor. He found the team to be very supportive and professional.
 

Pauline is full of praise for her cardiologist.

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Age at interview: 69
Sex: Female
Age at diagnosis: 65
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Oh, he’s lovely. He really is. It’s always, “Nice to see you again, [own name]. Now sit down. Now how have you been?” “Fine.” “Any problems?” “No.” “Good.” And then he just says, “We’ll have a little check.” And then this time he said, “Well, you haven’t done the treadmill for a couple of years or, and then I think you ought to do that.” “Okay.” Which I did and he takes good care of me and if I feel, he always says, “Now, don’t forget. If you’re worried about anything, you know where I am.” So you can’t ask for better than that can you?
 

Since his diagnosis, Keith’s care has been very positive.

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Age at interview: 61
Sex: Male
Age at diagnosis: 57
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All the way through and from my doctor instantly and then in the [name of hospital], when I went to see the consultant there, had all the tests, everything was crystal clear and explained absolutely perfectly. I was really you know, really delighted with that because I knew just where I was and what the. What the outcomes would be. 
Continuity of care made a difference to Eileen who was able to see the same consultant over a period of time. Nuala praised her cardiologists for being ‘very responsive and knowledgeable about what’s available and not available’. Roger was impressed that his cardiologist never hurried him during a consultation.
 

David Y enjoys a good relationship with his cardiologist who he described as ‘superb’.

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Age at interview: 67
Sex: Male
Age at diagnosis: 64
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He’s absolutely superb, this fella. He doesn’t talk down to you. He talks to you. He discusses everything in detail what he thinks will be best, asks you what you think, what, are you willing to go along with that? How do you feel about that? After you’ve had a consultation, he writes to you, and it’s surprising what he writes about because it’s in such detail, probably a page and a half and you think, how on earth did he remember to pick up those points because he wasn’t writing all the time? It’s a total discussion but, like I said to you, when he said to me about the warfarin, he thinks I should take it but, “How do you feel?” was what he said to me, “Are you willing to go along with it?” He’s not forcing me to take it but if you’ve got somebody who’s recommending it, who am I to go against his professional expertise? But no, he discusses everything in detail. He is a lovely person. He’s never trying to push you out. Always feel as though he’s interested in in you as an individual and also as his patient. No, he’s superb. 
 

Elisabeth X spoke of the empathy and understanding felt by her consultant after he himself had experienced AF.

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Age at interview: 74
Sex: Female
Age at diagnosis: 30
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Anything to do with the heart is immensely troubling because it always feels as though it’s a matter of life and death because it is, in a way. I mean I can’t remember now which consultant it was but a consultant here in [city] once said to me that he had had a bout of AF and he now realised how utterly terrifying it can be and it had made him feel quite differently towards patients. Because I would imagine they see someone with a healthy heart comes in, it’s beating irregularly but there’s nothing else wrong with it, so what are you worried about? You’re fine. But once he had experienced this for himself, he could understand how terrifying it is and it is quite difficult to get that across to somebody who hasn’t had it.
Bob, who was only diagnosed after moving house to a new area and a new GP, said that he had received ‘brilliant service.’ He said that his cardiologist was understanding and went above and beyond what he expected when he expressed his fears about his diagnosis. He took time to listen, talk with him and provide information. Paul requested an echocardiogram and was reassured when it showed there were no problems with the structure of his heart.
 

Chris Y felt more confident about his treatment after his cardiologist discussed his case with colleagues before prescribing medication.

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Age at interview: 64
Sex: Male
Age at diagnosis: 62
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Well, they, the consultant explained that he he’d talked to colleagues and, you know, they he presented them with, you know, what he knew about me and what I’d told him, and what all the tests and everything else he’d done, the scan results and all the rest of it. So they’d obviously looked at me with all the information to hand and decided that that was the best course of treatment for me. And that was something I felt, you know, very good about because they’d obviously, you know, looked at all the symptoms, all the results, the whole thing. They had the whole story and they decided that this was an appropriate medication to put me on. So that felt, I felt very good about that because you know, I was encouraged a) and b) I felt confident in taking that medication.
People welcomed the opportunity to be involved in deciding treatment options. In some cases the choice of treatment was clear-cut and people were happy to follow their doctor’s advice. Although Eileen felt ‘pushed’ into having a pacemaker, she admits there ‘probably wasn’t an alternative at the time’. Similarly, when asked if he had any objections to having a pacemaker fitted, Raymond agreed as it would stop him passing out. For others, reaching a decision on appropriate treatment came after discussions with health professionals. When Elisabeth X’s consultant discussed the possibility of having an ablation ten years ago, she decided against it after weighing up the odds of it being successful at her age. She said there was no pressure put on her to have the surgery. (For more see ‘Medical procedures and interventions for atrial fibrillation’).
 

Nuala had over 20 unsuccessful cardioversions before reaching a decision with her cardiologist to remain in AF and regulate her heart rate rather than rhythm.

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Age at interview: 60
Sex: Female
Age at diagnosis: 48
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It was me that was pushing for them in a way and I would have said, you know, I wanted it because I so much wanted to be in sinus rhythm and I suppose they were going along with me as well, although the last time, after three episodes both the doctor had said to me and I said I’d thought about it as well and I thought I really don’t want to keep doing this.

Did they discuss it with you much in previous times and so on?

They would have done I, you know, and talked about long term and said to me that I probably will go into AF and I suppose again I was in denial and didn’t want to hear it and I really pushed for it not to happen. And, at the same time, was thinking, if you keep doing the same thing, “If you if you keep doing what you’re doing, you’re going to keep getting what you get.” And all that was in my head but there was still this drive in me to keep in sinus rhythm.
 
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Jeni refused to take beta-blockers initially but changed her mind later after discussions with her arrhythmia nurse.

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Age at interview: 41
Sex: Female
Age at diagnosis: 40
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When I was actually at the hospital they did offer to give me beta-blockers then, the choices were I could go straight onto beta-blockers and wait to see the cardiologist on beta-blockers or I could do nothing, have nothing and just monitor them and if I have another bad attack, go to the hospital. I chose not to have beta-blockers because I don’t like taking drugs but, as the years progressed, as the months progressed, I’ve, you know, talking to the arrhythmia nurse, she said, “No, you need to go on beta-blockers because you’re having too many episodes, you’ve not been very well.” Because it does drain you. If you’re having a lot of episodes, a lot of small episodes, it does make you very tired. You’re constantly dizzy. You’re constantly out of breath because, basically, your heart is trying to beat too fast all the time.
Praise for paramedics, GPs and arrhythmia nurses 
Some people spoke of the excellent care they had received from paramedics when being taken to hospital with AF. Pauline was monitored in the ambulance on the way to the hospital, with the reassurance that ‘you’ll be okay’. The paramedics who took Jeni to hospital were ‘fantastic’. They were informative, professional and kept her calm.
 

Paramedics helped Anne better understand her condition.

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Age at interview: 71
Sex: Female
Age at diagnosis: 70
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Look, one of the ambulance drivers, and my goodness what a terrific bunch of people they are, without fail, they are so calm and so nice, so helpful. And one of them said to me that, I said, “Well, why does this happen when I’m, you know, I mean if I was doing exercise and the heart went into overdrive, you could perhaps understand it but always, it’s when I’m doing nothing really.” And he said, “Yes, well, we nobody knows that but because you’ve got this left bundle block, the heart, the wall, the blood goes, it should go A B C D and for some reason it goes A D E and goes the wrong way round, and then gets into a, you know, a confused state.” And that’s, you know, the only way I can sort of visualise it.
The policy of having the ‘door left open’ after treatment was appreciated. GPs and arrhythmia nurses came in for special mention. Describing their GPs as ‘terrific’, ‘excellent’ and ‘fantastic’, people spoke of the support, care and timely referrals they offered. Arrhythmia nurses played a vital role providing essential telephone and e-mail links between the patient and consultant, and offering advice and reassurance between appointments. Jeni’s arrhythmia nurse rings her regularly and has ‘allayed any fears’. Rather than being ‘just a number’ she felt like she had been ‘personally treated’. Chris X said he found it reassuring that even though he had been formally discharged from the care of the consultant, he had the contact details of the arrhythmia nurses who he could call if he had any concerns or changes in his condition.
 

Vera found it reassuring when her GP gave her printed information to take away and discuss with her sons before deciding on treatment options.

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Age at interview: 75
Sex: Female
Age at diagnosis: 74
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I went back in the afternoon and he said, “I have to tell you, you’ve got atrial fibrillation.” And I’d no idea what that was, so he described it and he gave me, he also printed out about six pages of information about it, which I found very interesting, and he said, “There are two ways we can treat it, either with aspirin or with warfarin.” And he talked me all through that, and this was all on these information pages anyway. So I he said, “Come back in a week. Read it all through and consider it. Talk it over with your sons if you want to, and then come back and let me know what you want to do.” So I took it all home and he was very reassuring about it. You know, he didn’t make me frightened or anything and, in a way, I was quite glad to know because I’d been getting a bit breathless before that and I’d got very tired. 
(See also: ‘Negative experiences of health care for atrial fibrillation’).
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