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Atrial fibrillation

Messages for health professionals and decision-makers from people with atrial fibrillation

We asked people what messages they would pass on to help health professionals and NHS decision-makers provide a better service and better care for people with atrial fibrillation (AF). Based on their experiences, they told us they wanted:

Honesty, openness and a willingness to share information
People wanted to understand better their condition and their treatment, advice about drugs and possible side effects, and a ‘straight down the line’ approach and open dialogue when discussing the risks of AF and surgical procedures.
 

Anne felt that she had received contradictory messages about the seriousness of AF.

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Age at interview: 71
Sex: Female
Age at diagnosis: 70
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This division between, you know, between the ideas that this is not a life killer but you must go to hospital and you must be there by ambulance, the quickest way possible, if the palpitations go on for more than five minutes, doesn’t seem to make any sense at all. Somebody is not telling the truth. Either it’s a much more serious condition than they’re indicating, or people who are sensible, could be given more autonomy over their own condition. 
 

For Brendan, good professionals listen, provide information and instil confidence in their patients.

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Age at interview: 59
Sex: Male
Age at diagnosis: 57
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I think the first thing would be good information, without a shadow of a doubt, I think good information about what’s happening to you. I think an honest dialogue as well with your whoever’s, you know, with the clinicians involved about what it means, what the options are, and probably some consideration about prognosis and things like that, you know, what it is you can expect. I think those for me would be the key things. Very much I think a mark of any clinician is their ability to listen as well as to inform.

I think about AF, about anything else, as I said earlier on, what makes a good professional is that, you know, I think timely information, well-articulated information. The ability to listen as well to what’s being said and to get into real communication with your patient is very, very important. I’m very lucky because I have had, particularly my consultant has demonstrated all of that, which means that I have a huge amount of confidence in him. Now no patient is going to respond well to any clinician unless you have confidence in what it is they are saying. And I think that’s something that clinicians are very, very slow to learn. I mean I’ve seen it again and again, you know, they just don’t listen. So that, I think that for me would be a really, really important message.
People felt doctors should take people’s fears more into consideration. They wanted to know what to expect from their condition long-term; what to look out for and what to do should their symptoms worsen. (For more see ‘Psychological effects and facing the future with atrial fibrillation’).
 

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.
 

Paul is unsure what the future holds for him. His doctors have never given him a prognosis but just knowing he has a heart condition causes him concern.

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Age at interview: 57
Sex: Male
Age at diagnosis: 55
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I don’t think that I’ve ever been sort of… I’ve never been given the information from the doctor or the cardiologist where they say, “Well, this is how it’ll go.” Yeah, nobody has actually said, you know, “It’ll become a permanent thing. It won’t get any better.” You know, I mean I’ve never really been given a diagnosis in that or prognosis of that. So it’s all been left for me to sort of ponder over how it’ll go, which again, is not perhaps the ideal because what you perceive the way things are may not be obviously, the way the way, you know, how it could be but yeah, I mean it is it is it’s worrying. I think you… everybody will have to worry about it. If you’ve got a condition of the heart, it’s automatically the one thing, “Oh my God, I’ve only got one of them and it’s.” You know anything goes wrong with it can be, you know, I think it can be quite frightening for quite a few people and I tend to try not to dwell on it too much but yeah, again, I just live each day and but I know I’ve got the condition. It’s not gone away and again I’ve got some important decisions to make probably further down the line but not at this moment in time.
Answers to their questions and more time
People also expressed a curiosity about their condition. They wanted answers to questions such as: How and why does it happen? Why did my AF start when I was young when it’s primarily a complaint of older people? Is it hereditary? Could I have prevented it? What is the best way forward? What are my options? What would happen if I did nothing? 

Yet some people did not always get answers to their questions or fully understand the implications of their condition or their treatment options. They stressed the need for doctors to give people time to consider treatment alternatives and an opportunity to ‘come back later and find out more’. As Mary said, ‘they assume we understand, but we’re not medical people’. Listening to people’s concerns was a key message for health professionals.
 

Glyn spoke of the frustration of brief appointments and felt that doctors did not always listen to his concerns.

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Age at interview: 64
Sex: Male
Age at diagnosis: 56
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I think [sighs] as I say, because when you go and see them, you’re only restricted to time to ten minutes per appointment, you tend to think that they’re, you say so much and then you might not say everything you want to say and then you’re rushed outside again after ten minutes and you don’t fully, you don’t say everything you want to say to them, like you feel so frustrated, you know. They don’t listen sometimes to what you’ve got to say or they don’t take on board your worries and concerns, you know. Or they don’t take on board your, when I told when I told the surgeon once about my son all he said was, “Oh well, I’m only here to treat your atrial fibrillation. Your son is your responsibility.” I said, “I know that.” I said, “But don’t you understand AF has a big impact on that, you know, and the way you treat me with AF, if it if it doesn’t work, I’m stuck.” I just can’t, you know, I just can’t seem to get the point across, AF is such a big factor in my life that it’s affecting my private life as well as my work life, you know.
 

According to Maggie, only a few minutes more in each consultation could relieve the tension patients feel when their concerns are not addressed.

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Age at interview: 70
Sex: Female
Age at diagnosis: 61
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For the cardiologists, I would say, give your patient time, give, I know they’re very, very busy and they cannot but there are also other specialists out there who can give that time, which I gave you an example of earlier. They do have that time to give you, even if it’s another little spare five minutes. If you’re a busy specialist and you are used to giving everyone you see only five minutes, it’s very easy to only give five minutes in the middle of that clinic to some person who may need six or seven minutes just to relieve the tension, understand or be able to ask the question to you. But because they’re pushed through so quickly they don’t feel as if they’ve had the time.
Empathy and reassurance
Above all, alongside ‘facts and figures’, people wanted empathy and reassurance from health professionals. Freda felt that being concerned can make AF symptoms worse and stressed the importance of putting the patient at ease. Rather than being brushed off with a simple ‘it’s AF, get on with it’, Paul asked medical professionals to give patients information at the same time as reassuring them.
 

Jo wants to see more empathy from health professionals. Telling people to relax is not feasible with AF.

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Age at interview: 64
Sex: Female
Age at diagnosis: 53
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They’ve got to realise that to the person that is suffering from this condition, that the distressing symptoms are very real to them. It’s not just a flutter of your heart. It’s not just a panic attack. It’s not just, you know, anxiety. It’s not, go away and relax. This is a very real condition. It’s the full mechanism of your heart that is out of order. It’s your own natural pacemaker that has gone wrong and people tell you, “Oh relax.”
 

Suzy wants health professionals to be patient and to understand the psychological impact of AF.

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Age at interview: 49
Sex: Female
Age at diagnosis: 48
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Ah. I think just be patient, be compassionate and understanding and give the person time to digest the information and to accept, and give them, yeah, give them ways of accessing information. And again, if they seem very anxious and not very reassure-able, if they don’t rally to sort of an accepting outlook and ready to tackle things, if they’ve completely lost their sense of humour, then consider psychological support for them as well. And again, don’t underestimate that. Just because they haven’t got an open wound or they might not even be in pain particularly, it’s still a very, very unpleasant condition to have for some, for some people who get strong symptoms. And everybody experiences it differently as well so I can imagine that health professionals might sometimes be tempted to say, to think, “The last person who came through the door was sort of really good about it, why is this one playing up so much?” [Laughs]. They might not be thinking that but it would be understandable because for some people it’s more scary, there’s maybe more adrenalin being realised and the symptoms are much more dramatic. Whereas for the first person, they just don’t notice it so much and that’s why it’s easier for them to be stoical about it. 
People also stressed the need for health professionals to appreciate the psychological impact of AF on the patient and their family. (For more see ‘Psychological effects and facing the future with atrial fibrillation’). Nuala wanted doctors to show an understanding of ‘what AF’s like for the patient and the journey – an awareness of how debilitating it can be’. Eileen, who has had AF for ten years, spoke of the mismatch between a medical system which focuses on the disease, and people who have to live with its consequences. Similarly, Jeni reminded health professionals to be more sensitive to the impact of AF on people’s lives: ‘it might not kill you, but it devastates your life’. She stressed the need for doctors to ‘see the patient’s side as a whole rather than only seeing the disease’.
 

Bob believes that doctors need to recognise the emotional impact of AF and provide psychological care.

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Age at interview: 66
Sex: Male
Age at diagnosis: 59
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They need to know how mentally damaging it can be emotionally. AF and the way it affects quality of life, the outdated feeling that AF is a benign nuisance must be binned. We’ve got to get the message across that it’s debilitating. It’s emotionally damaging. Regardless of any stroke risk or anything like that, the fact is, people that have AF go through a very bad very dark place. Eventually, most people come out of it and start to understand what the situation is, but this was one of the things that I spent a lot of time in the committees that I’ve been involved with, trying to make sure that people, who are making the decisions, recognise that physical care is one thing, but the psychological care is also important. And I think the care makers, shall we say, the people who are running the NHS need to recognise that it is not just a physical condition. It creates very bad mental conditions with it, and it can cause long term depression and, as I’ve intimated, almost agoraphobia, that people are terrified to go out and once that happens, you’ve lost them from the workplace. And supporting those people and getting them back into a good quality of life and back into the workplace is going to save money in the long run.
 

Carin felt that some doctors did not appreciate how ‘horrendously frightening’ AF can be.

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Age at interview: 62
Sex: Female
Age at diagnosis: 55
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I think people don’t realise, you know, what it feels like. Well, she’s very matter of fact, you know, okay, you know. Just, “Go to the gym. Go and do the exercises and, you know, if you feel if you feel you get the palpitations, just stop.” But, you know, she doesn’t realise how horrendously frightening it is. It’s really, really scary and yeah, so well, you I only know what it feels like and, you know, it’s not funny. So she doesn’t quite, people don’t quite understand and the health professionals neither, you know. When you haven’t had these things yourself, you think, “Oh well, that’s a benign condition. There is just a risk of clotting, otherwise.” But I don’t feel like that, you know. It’s a major thing to have in your life. Of course, there are worse things [laughs] but it’s real enough. But I would like I would like I just wish they would understand it better and sort of give people like myself, just an opportunity to go to a gym, where there’s medical supervision. That’d be lovely, and then I would have enough confidence into getting more active.
Patient centred care and shared decision making
Some people wanted doctors to appreciate that patients with AF are affected in different ways and to different degrees. As Eileen acknowledged, ‘people are affected differently – some are totally disabled, others aren’t’. There was a feeling that people and their specific needs could sometimes get ‘swept aside’ in the system.
 

Rather than being treated as a name and a number, Glyn believes people’s views should be taken into account.

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Age at interview: 64
Sex: Male
Age at diagnosis: 56
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Well, I don’t think they take on board peoples’ individual views, to be quite honest with you. They’ve got they’ve got their way of treating AF and that’s the end of it, you know. You’re sort of a minor detail to them, you know, just a name and number. I know they can’t afford to get emotionally involved with your case. I know you’re just looked upon as just a one case and a name and a number but, at the end of the day, you feel as though you’re just a robot, you know. You’re not being treated properly, you know. You’re not being treated with the respect you deserve, you know.
 

Gail, a retired GP, felt that health professionals need to know about each person’s experiences.

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Age at interview: 62
Sex: Female
Age at diagnosis: 44
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Ah, now that’s a really big one isn’t it? [Laughs] I think they need to know that they’re very, that they’re much more significant than most than most doctors and nurses realise. And that they’re very hugely varied and idiosyncratic and personal. And that they should be acknowledged, and it doesn’t actually need very much acknowledgement. You don’t need to kind of go into, unless someone is really, really struggling obviously, but for the average person who’s coping reasonably, it doesn’t take much. I mean, as I said, could be just a couple of questions like, “How are how are you?” “How is the condition affecting you at the moment?” Or, “How is it affecting your life?” And just a little acknowledgement that, you know, about how it might interfere [coughs] interfere or affect with each individual’s life, and an acknowledgement that that might be difficult. That’s all that it would take, and then you just feel more like understood I think and seen as a whole person. And that, yeah, and you’re not just a body sitting there or a machine that needs adjusting.

Take more notice of that, patients’ individual, subjective experience and, you know, fears, concerns, expectations, whatever and the fact that even though the ablation is a “minor procedure”, it’s actually quite traumatic, can be quite traumatic. Yeah and to and to, even though, you know, on these wards where they have a huge throughput, each person, for each person that’s a unique and very significant experience, and just to remember that, yeah.
 
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Jeni stressed the need to recognise the ‘human’ side of AF and to treat each person differently.

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Age at interview: 41
Sex: Female
Age at diagnosis: 40
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I think sometimes when you go to see doctors or hospitals, especially if you’re in the hospital, you’re just another patient. You’re just another you’re just, not a body, but you’re another condition, another illness to them. You’re not actually a person and an individual. And I think sometimes in in any form of the NHS and with, you know, it can sometimes be forgotten that actually, inside there’s a human being with a personality and fears and questions and thoughts and aspirations. So it, I do feel that they need to look at the person and each person is different. Each person is going to deal with atrial fibrillation differently.

Keep people informed and tell them the reasons why you’re doing things and just remember that that person could be very scared and too scared to ask a question because they might not want to hear the answer and they might of thought the worst and it’s probably not the case.
People wanted health professionals to see them as individuals. When Gail was in hospital for an ablation, she felt as if she was in a ‘sausage machine’, where the nurses were ‘pleasant, but obviously not interested in you as a person.’ (For more see ‘Medical procedures and interventions for atrial fibrillation’). Many people felt that treatment options should take individual needs into account. Janet urged clinicians to look beyond AF and recognise co-existing health conditions which may conflict with standard treatments. Nuala urged health professionals to ‘listen to the individual’. Carin said she would have liked to have been told what the consultant thought would be best for her, and felt that doctors feared being sued, and thus tempered their advice.
 

Dave, who describes his AF as mild, advised doctors not to ‘force treatments unless absolutely necessary’.

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Age at interview: 61
Sex: Male
Age at diagnosis: 50
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Make sure that you know, not force not force the standard treatment. You know, just because I’ve got atrial fibrillation doesn’t mean I’ve got to have beta-blockers. It’s actually, you know, presume there’s gradations of intensity or severity of AF and therefore, you need a different [coughs] excuse me, a different regime, treatment regime for each level or whatever. 

But yeah it’s just tell me if it’s going to get worse, what the symptoms will be when it gets worse so I know what to look out for and also actually, don’t force, don’t try and force treatments unless it’s absolutely necessary. Obviously, if I’m dying, then I would be quite interested but if I’m not dying and I’m actually managing to live a, you know, a reasonably contented lifestyle then let me get on with it. Thank you very much.
 

Richard, who has kept detailed records of his condition, believes that health professionals need to accept feedback from patients when it is offered.

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Age at interview: 56
Sex: Male
Age at diagnosis: 52
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And I’ve shown them all this stuff and they’re not interested. You know, they just think, oh, you know. I thought naively these guys would be interested to see somebody who had kept such detailed records for such a long time, which can’t be that often, you know, they can’t have all that that data very often but they’re not. I mean they really just, I mean I guess, you know, this guy is a sort of, I don’t know if he’s a top cardiologist, but he’s a very experienced cardiologist and, you know, they see people with so many more serious ailments than I have. So for me it was probably, he just thought, well, it’s just another guy with AF and, you know, this is what you do and that’s that. 

I don’t know how they keep up to date because there seems to be not much of a feedback loop through the patients and back to the doctor. You know, they treat something and hopefully it works and then they never hear whether it worked or not and so I would hope the sorts of things that you’re gathering and that other people gather and data and information somehow gets back to them in a simplified form that they can, you know, read in a short time because I know they’re busy.
Some people we spoke to wanted more control in monitoring and managing their condition. This was particularly the case in relation to self-monitoring of warfarin medication. (For more see ‘What is it like being on warfarin for atrial fibrillation?’). Dot was planning to start self-monitoring shortly and was pleased as it would fit in well with her working life. Roger spoke of how an expert patient programme had helped him manage his health.
 

Anne wants to be in control of her warfarin medication but has had to battle to get her GP to support this.

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Age at interview: 71
Sex: Female
Age at diagnosis: 70
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But I want to be in control of it myself. The nurses are busy up there.  They don’t seem to be, I don’t know, they made a mistake a few times. They’ve, when it started to settle down, they said, “Oh good, we don’t need to see you again for six weeks.” This had only been one reading that had been stable. So I feel much safer doing it myself but I asked them, they said, “Oh no, no, no.” I asked the GP and they said, “Oh, we’re not allowed to.” And they read, the GP read me out something from the primary care trust or whatever it’s called nowadays saying, you know, “[local area] GPs must not get involved with people self-medicating.” Which seems so stupid because it’s going to be a hell of a lot more costly dealing with residents with strokes than, you know, than spending a bit of money on the on the strips and the needles.

Anyway, I have pushed it and pushed it and pushed it and now, it turns out, that yes, [local hospital] has got a programme all set up that if people are persistent and they buy their own and they buy their own strips, then they can monitor them and test the machines every now and again, perfect. But it’s been a battle getting as far as this to find out that, actually, yes, if I do go and buy it, I will be supported with it. It’s really been a battle getting that information. Nobody was going to volunteer it.
Some people expressed views on commissioning. David Y felt that patient views need to be considered further rather than relying on ‘top down’ decisions when commissioning services for people with AF. When talking about the role of NICE (National Institute for Health and Care Excellence) guidelines in relation to treatments for AF, Paul felt that ‘their hands are tied by cost more than by effectiveness’. 

The best care available, regardless of where you live
People spoke of wanting to get the ‘best physical care available as quickly as possible’ and stressed the need for patients to be made aware of medications and their side effects as well as the range of services and facilities available. They wanted good follow-up support from their cardiac team after operations, regular monitoring and the opportunity to speak to other people with AF, as well as money set aside for research. Some suggested educating people about prevention and lifestyle to help them cope with AF. 

Having good support throughout was a key to successful management of AF. Some people spoke about how beneficial they had found the services of a dedicated arrhythmia nurse. They found the opportunity to contact their nurse directly by phone or e-mail particularly useful, finding this often assuaged their concerns and reduced GP visits and hospital admissions. 

People were adamant that good care should be available to everyone with AF, regardless of where they lived. They noted a lack of consistency in services across the country, expressing concern that certain areas of the country seemed to be more favoured than others. They told us that services for people with AF, access to specialist centres, and at times more expensive drugs and treatments, were not equally available. Glyn suspected that some forms of treatment were ‘just restricted to London’ and not available in the smaller hospital near his home.
 

Elisabeth Y, who lives in a remote part of the UK, spoke about how health care could be improved in isolated areas.

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Age at interview: 69
Sex: Female
Age at diagnosis: 63
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I found out fairly recently, through the Atrial Fibrillation Association of a new type of cardiologist, the electrophysiology cardiologist and I thought, “That’s the man for me.” He specialises in irregular rhythms, you see [laughs]. 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 and, eventually, I’ve had two different appointments down in [mainland city] but one was for an ordinary cardiologist, who wasn’t much help, but I did get an appointment. And then I got this appointment last September, just nearly a year ago, the fifteenth so it’s nearly a year, with this electrophysiologist guy [laughs].

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.

Well, I think you ought to be seen by at least a cardiologist once, don’t you think? Am I being unreasonable?

It sounds a sensible idea [laughs].

[Laughs] and I think it’s easier for one fit young professional to move north for a day or two than for a whole lot of frail elderly people to have to go all that way to [mainland city] and then to miss the boat home. 
 

Eileen called for standardisation of treatment and services across the UK.

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Age at interview: 63
Sex: Female
Age at diagnosis: 53
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It’s very what do you call it, post code dictated. London, you’re lucky, you’ve got loads and a lot of specialists that specialise in it. There is a list on the internet. I don’t know much about the rest. [City] has got quite a good unit but I don’t know whether they’ve got any electrophysiologists or not. That’s the real thing is finding the EPs, especially in this day and age because there’s a lot more younger people that are developing AF and so you, you know, and to develop it at thirty and forty is it must be horrendous. So no, it’s very much a post code lottery.
Greater awareness of AF in primary care and in the community
Some people said that they had never heard of AF before they were diagnosed, adding that they would have taken their symptoms more seriously and visited their GP sooner had they known about the condition and the associated increased risk of stroke. With this in mind, they stressed the need to raise awareness of AF and stroke risk amongst both GPs and the general public, believing that early detection of AF and prevention of stroke would be more cost effective for the NHS. Brendan felt that awareness should be raised amongst the general public, but that it should be ‘very measured, so that people don’t get scared about confronting health issues.’ (For more see ‘Increasing public awareness about atrial fibrillation’).
 

James, who had a stroke caused by AF, felt that GPs were either not taking AF sufficiently seriously or lacking in understanding of the condition.

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Age at interview: 63
Sex: Male
Age at diagnosis: 59
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The doctor should take your pulse as a regular matter of routine. And the AF Association handed out posters once, which I got put out at the surgery, doctor put them up in the surgery, ‘mighty pulse’, and it was telling doctors that they should listen to, check people’s pulses as a matter of routine. And he never put it up and when I went, I went to see him once. He started taking my blood pressure and he said, “Blood pressure is fine. Your AF’s under control.” I said, “It’s my pulse you should be checking.” And I needed I had to go for a routine sort of over sixties heart check at the centre the other day, health centre the other day and they took my blood pressure again. I said to them, I said, “My condition is for you to check my pulse.” And you tell them that, nobody still takes your pulse, which I think that’s ignorance on their part because they don’t understand the criteria, and I try to put the message across at my local surgery but it didn’t get across.
 

George Y believes that greater attention should be given to AF.

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Age at interview: 66
Sex: Male
Age at diagnosis: 58
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This problem is not going to go away. As the population grows older, the it will get a bigger, it’ll become a bigger drain on the resources that are already there, and if it could be avoided or checked before it becomes the, in my sense, the dread of a stroke, it’d bring a lot of relief to peoples’ minds that they’re being caught, preventative is better than fighting it afterwards. It’ll cost less. It’ll be cost efficient and I I’ll be in favour of anything that would bring it to the notice of the public and to the lawmakers, the policy makers, whoever you like, and to yourself [laughs].
 

Suzy has tried to spread the word about AF amongst friends. She believes GPs need to know more about AF and increase awareness.

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Age at interview: 49
Sex: Female
Age at diagnosis: 48
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No, people are blissfully unaware of AF and the symptoms associated with it and I’ve tried to do my bit to spread the word. And so when I told all friends and family, obviously, after my experience with AF, I’ve said to a number of female friends, the thing is I’m 49 and so quite a few of my friends are at this age where they’re sort of heading for the menopause, which quite often goes with palpitations anyway. And women are told not to panic, that it’s just palpitations, and I now very much know that you should never ignore palpitations. They’re probably alright but you may as well go and have them properly checked out, because they may be AF and then you’re much better off if it’s caught early. So as a result of me telling all my friends and people I know about this, my friend, [name], who’s been having palpitations for three or four years, went to her GP. The GP referred her to a cardiologist. She had a seven day monitor and she was in AF. She was in AF two or three times or so nearly every day for a short period that week. So at least my experience has helped one person be diagnosed and hopefully, be diagnosed nice and early but I would want to say that to everyone. And I think GPs need to know more about it and, without making people panic about what might be just completely normal, people need to be aware of it. Unfortunately, that costs money to have everybody monitored and checked out, and so that’s why I think it would be fantastic if the makers of monitors for home use could sort of maybe get their act together.
Other people wished to stress the importance of anticoagulants (blood thinning medication), and of GPs and nurses taking people’s pulses (as blood pressure machines can measure the pulse rate, but not whether it is irregular). Elisabeth Y believes that health professionals need to learn to take pulses without using electronic gadgets. Some suggested a screening programme, incentives for GPs, or ‘supermarket roadshows’ where people could have their pulse checked opportunistically. Others suggested that posters should appear in GP surgeries to inform people about AF. (See also ‘Atrial fibrillation, stroke risk and blood thinning medication’, ‘What is it like being on warfarin for atrial firbrillation?’, and ‘Alternatives to warfarin for atrial fibrillation: the new anticoagulants’).
 

Jenny would like to see a campaign where it becomes second nature for people to visit their GP if they have signs of AF.

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Age at interview: 55
Sex: Female
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That’s the real bummer, that’s it such an easy thing to know you’ve got it or you haven’t got it, and to think that I heard, I heard James’ heart not beating in, as it should do and didn’t do anything, and yet if you think if you had a lump, everybody, everybody knows that if you find a lump, you’d go to the doctor wouldn’t you. You might be frightened to go but you, everybody knows that that potentially could be cancer. So you would be there, wouldn’t you, like a shot from a gun, and if we’d done that, as I said, a huge chance that James’ stroke would never have happened.
(For more see ‘Positive experiences of health care for atrial fibrillation’ and ‘Negative experiences of health care for atrial fibrillation’).
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