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 weve 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.

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.

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.

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].

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].

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.

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.

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 hes ever quite a hundred per cent coming to me and saying, Well, there is this treatment. There is this treatment. There is possibly this.

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.

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.

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.

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.

[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, Were 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.

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.

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. Theres 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 hes got to deal with, you know, that one illness, you know, he runs rapidly out of his knowledge zone.

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.

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 weve 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, theres nothing we can do. Theres always something that can be done.