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.

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.

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.

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.

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.

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.

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.

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, theres 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.

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.

I think people don’t realise, you know, what it feels like. Well, shes 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 theres medical supervision. That’d be lovely, and then I would have enough confidence into getting more active.

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.

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.

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.

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 hes a top cardiologist, but hes 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.

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.

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.

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.

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 peoples 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.

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].

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.

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 wed done that, as I said, a huge chance that James’ stroke would never have happened.