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Heart failure

Attitudes to heart failure monitoring

Having their heart condition monitored generally gave people a sense of reassurance that they were being looked after, test results were satisfactory and any problems would be quickly dealt with. Several said it gave them ‘peace of mind’. Mike, who was fitted with an ICD after a cardiac arrest but had no previous history of heart problems said that having his ICD monitored at home made him feel safe.
 

Roger likes to know what’s going on so is comforted by knowing that someone is keeping an eye on his heart condition.

Roger likes to know what’s going on so is comforted by knowing that someone is keeping an eye on his heart condition.

Age at interview: 68
Sex: Male
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Oh it’s a good idea. Definitely a good idea. I mean, you know, ‘cos you like to know what’s sort of what’s going on and that. And it’s nice to know somebody is taking that interest and keeping an eye on you. ‘Cos if I had been just sort of left to my own devices then I wouldn’t be very happy. And I would be worried, to be honest. But, yeah, I’m quite happy with it. 
 

He appreciates being sent test results in writing accompanied by instructions for any changes of medication dose.

He appreciates being sent test results in writing accompanied by instructions for any changes of medication dose.

Age at interview: 66
Sex: Male
Age at diagnosis: 64
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I mean, I get letters every time they take a blood test, I get a letter through telling me what’s wrong with or what’s right, you know, if there’s anything wrong, it’ll tell me on this printout, the nurse sends me the printout every time and if there’s anything wrong, they’ll change my tablets to bring the levels down to what they should be. You know, it’s difficult, I mean, I don’t understand it completely you know, I have to rely on the nurse and the doctors and know that they’re doing the right thing.

Do you find it reassuring that you get that sent to you or does it worry you?

No, it doesn’t worry me. Yes, it reassures you, I suppose, because it does tell you that everything is right, you know. When I have got the one that’s been very high compared to the last one, I just ring the nurse up and say, “Well why is this?” And she will say, “Well we decided to, we’ll cut down on this tablet until that drops to below 10 or 12 or whatever it should be. And then it levels out and then we’ll take it from there.”
For some people, having tests done or waiting for results could cause anxiety. One woman said she got ‘worked up’ before hospital appointments, so wasn’t surprised if told her blood pressure was raised. It is well known that blood pressure measurements can be higher when taken in a medical setting than when taken at home (‘White Coat Syndrome’); this is a reason why home monitoring may be better for some people. One man said he worried that something had gone wrong when he was asked for a repeat blood sample, so was relieved when the results were alright. Others could feel frustrated by the need for frequent appointments with health professionals, often at different locations and sometimes at inconvenient times of day, although this was easier if they were retired, like Peter. Anne, whose monitoring included a weekly automated telephone call to check on her condition, said that although it had been a comfort at first she now finds it ‘an encumbrance on one’s life’ and an unwelcome reminder of her heart condition.
 

Being retired Peter doesn’t find attending hospital appointments difficult and sometimes combines the longer trip to the specialist hospital with a theatre visit.

Being retired Peter doesn’t find attending hospital appointments difficult and sometimes combines the longer trip to the specialist hospital with a theatre visit.

Age at interview: 67
Sex: Male
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There are just downsides in the, in the sense that the specialist hospital is obviously a longer distance away than the local hospital.  But because we’re retired we can often combine that, if things aren’t too traumatic, with something else. Dare I say, even a theatre visit. That’s what’s going to happen this Wednesday. We’re going from the appointment to the theatre.

Very nice.

Yes. So in retirement it’s not so bad, and because both my wife and I are getting to the point where, you know, things by, through age are breaking down anyway and we’ve all got our particular weaknesses, we’re getting used to hospital appointments. We’re not fighting it. 
 

Although a comfort at first, after 6 months Anne is finding her weekly automated telephone calls from a nurse a bit tedious.

Although a comfort at first, after 6 months Anne is finding her weekly automated telephone calls from a nurse a bit tedious.

Age at interview: 73
Sex: Female
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But once a week I get a phone call from the hospital asking me how I am today. Are my ankles more swollen? Am I more breathless? And have I put on weight? And it’s all, you press a, ‘Press number one if these results are okay’, and then I get, ‘Thank you for telling us how you are today. Goodbye and I will phone you next week.’ 

I’m finding it a bit tedious and it is reminding me that there is a problem. So I am not sure how long I want to continue with it but it’s, it’s a real. I think when I was first diagnosed it would have been a real comfort to have that, but I’ve had it probably now, it’s, it was under a pilot scheme. I suppose I’ve had it for about 6 months now. 
There may be psychological impacts on other people, not just the person being monitored. For instance one man said his wife was upset by the sight of his remote monitoring device on the bedside table because it reminded her about his condition. After attending a meeting for users of the remote monitoring device, they learned that the machine could be hidden in a cupboard and still work, which helped his wife to cope.
 
Some people we talked to were asked how they would feel if changes to their monitoring were suggested and what specific changes would be acceptable to them. People commonly said that if a change was proposed they would want to know why and expected that their health professionals would discuss it with them. One explained that he wanted the option to disagree; others said they would be happy to go along with changes so long as they could see a good reason for them. People associated how often they had check-ups with the stability or severity of their condition — if they were told they needed them more often it would suggest their condition was getting worse; being seen less often would suggest that their doctors felt confident in the stability of their condition.
 

Mike would want to know the reason for any change to his monitoring regimen and have the option to disagree; more frequent check-ups would suggest he was getting worse.

Mike would want to know the reason for any change to his monitoring regimen and have the option to disagree; more frequent check-ups would suggest he was getting worse.

Age at interview: 69
Sex: Male
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So how would you feel if the health professionals wanted to change the way they were monitoring your condition?

I think I’d question it. I wouldn’t, I wouldn’t say, “Oh alright”. I’d want to know why, you know, like why they’re going to change it.  You know, and if they said, “Blah, blah, blah”, and I didn’t agree with it I would say. I would say, you know, I don’t agree with it, you know, but at the moment they haven’t, you know, so… 

What if they wanted to see you even more often?

Well, well so be it. You know, it wouldn’t bother me, you know.

Or less often?

Perhaps that would bother me a little bit. But more often wouldn’t really bother me, you know. The only feeling I would have if they wanted to see me more often, am I getting worse? Is my health getting worse? You know, that’s, you know, that’s a query that that I would have then, you know. 
 

When Daniel has longer intervals between check-up he feels reassured that his doctors believe his condition is relatively stable.

When Daniel has longer intervals between check-up he feels reassured that his doctors believe his condition is relatively stable.

Age at interview: 38
Sex: Male
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What if they wanted to change aspects of the way they were monitoring you, how would you feel? 

It depends whether it was optional or not. And if it was going to, if I thought it would improve anything. 

What if they wanted to see you less often?

Well sometimes they do, sometimes they do see me less often. And that's sometimes quite reassuring to know that they think you're obviously stable enough then not to see you. And then vice versa if they need to see you more. 
An elderly man who experienced bouts of low blood pressure as a side effect of his medication, leading to falls, commented that, because his blood pressure seemed to fluctuate, more frequent testing might enable him to plan his daily activities better.
 
People who were not currently monitoring any aspect of their condition at home were asked how they would feel if asked to do so by a health professional. Some said they wouldn’t mind measuring their weight or blood pressure if it would help the professionals, particularly if the equipment was supplied. Some were happy in principle but wouldn’t want to do it too often. For instance, Robert who was already weighing himself weekly for his own interest said he would be happy to check his blood pressure at the same time but not more than weekly while his condition was stable. Peter said they would not want to monitor their condition themselves at all because they felt it could take over their lives and make them obsess about it.
 

Ted would be prepared to monitor his weight and blood pressure at home if asked by a professional to do so, but would not want to buy his own equipment.

Ted would be prepared to monitor his weight and blood pressure at home if asked by a professional to do so, but would not want to buy his own equipment.

Age at interview: 78
Sex: Male
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What about if they asked you to start measuring your weight at home every morning or something?

I’ve got no scales for a start with, so that’s something I couldn’t do [laughs]. I mean, if they said it was necessary, I mean yeah, okay I could do it. I mean it’s not a really big inconvenience but it would mean expense, which, as with I’m retired and on a pension, we don’t really need. But apart from that, yeah, it’s no reason not to do it.

Would you feel the same if they asked you to measure your blood pressure every day, if they gave you a piece of kit to do it?

Well, yeah, I could do that if they did it. 

 

Peter doesn’t want to check his blood pressure too often because it varies depending what he is doing and he doesn’t want to become obsessed by it.

Peter doesn’t want to check his blood pressure too often because it varies depending what he is doing and he doesn’t want to become obsessed by it.

Age at interview: 67
Sex: Male
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Do you monitor any aspects of your heart health at home?

I don’t take my blood pressure. We do have blood pressure machines but I’ve rarely used them. Again, I don’t want to get to the point where I’m testing myself. It could become obsessive, and I don’t want that. And blood pressure is a pretty sort of erratic, rapidly varying measure, and you can get, you can get the white coat effect, you can, you know, you’ve come in from the garden, you haven’t really relaxed or whatever or you, you know, whatever, all sorts of things can raise or lower your blood pressure and so I don’t, I don’t think it’s worth doing. I get it tested regularly enough. 

And is it pretty stable when you have it tested by the medics?

Yeah, it’s yeah, it’s usually, yeah, it’s nearly always within acceptable limits, yeah. And that’s because, you know, it’s hard to say, but I think it’s because of the medication, it has certainly kept it within acceptable limits, and again, physical activity will help to keep it down rather than up, yeah, keeping the weight off. 
 

Roger has little faith in GPs since they failed to diagnose his heart problem, so he prefers to be looked after by hospital specialists.

Roger has little faith in GPs since they failed to diagnose his heart problem, so he prefers to be looked after by hospital specialists.

Age at interview: 68
Sex: Male
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What about if they said, for instance, there’s no point you going to the hospital for these check-ups, you may as well have them at your GP’s surgery instead. How would you feel about that?

Not really happy about it. Do you want me to give you a reason?

Yeah.

Okay. ‘Cos two doctors missed the fact that I’d got a heart problem.  

Right.

And I’m not that impressed with them, to be honest. No. I mean, both of them done a test with me and, you know, had the stethoscopes out and that. As I say, when I got to the hospital, the first thing he said was, ‘You got a heart problem.’ Straight away. Now I don’t know whether they should’ve picked it up or not. I mean, I wasn’t very happy with them. I did put a complaint in about it. Because I mean, for two weeks, as I say, I went on steroids for the first week and the second week, that didn’t do any difference. The second time I went down there, they put me on antibiotics, which didn’t work. ‘Oh yeah, it’s chest infection, chest infection’. That was all they kept on about. Because I was asthmatic, or COPD, that was the first thing they done. But they only had to monitor the heart to know that it was all to hell, my heart beat was every which way but level, you know, very erratic. My pulse now is terrible. It’s not a steady, dum, dum, dum dum, you know. It really goes whacky at times. 
 

When Paula moved 400 miles away from her trusted consultant she tried seeing a local one but didn’t like him, so went back to the old one despite the distance.

When Paula moved 400 miles away from her trusted consultant she tried seeing a local one but didn’t like him, so went back to the old one despite the distance.

Age at interview: 46
Sex: Female
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What if your doctor four hundred miles away said, “It’s silly you coming all the way down here”, you know, “You should, we should transfer all your care to your local hospital”. How would you feel about that?

I would say, “Fine if that’s what you want to do, you don’t want me as a patient, that’s fine, but don’t expect me to see anybody else, I’ll deal with this on my own”. I wouldn’t see anybody else. It’s as simple as that. And the subject has been approached.  He did say to me, you know. Well, to be fair, when I moved from where I used to live up here to where I am now, there is a four hundred mile difference between my consultant, I did go to a consultant nearer by, which seemed like a good idea at the time. I had one consultation with this other consultant whom I was told that I was basically a hypochondriac, I’m not qualified to test my own INR and monitor my own health issues, blood pressure that kind of thing, so there’s absolutely nothing wrong with me and I need to get a grip of my life. So I then got up, said, “Thank you very much”, and walked out. I came home and I phoned my previous consultant who I was under originally,  spoke to his secretary and I said, “There is no way I’m seeing anybody else; I want to come back and see my normal consultant”, who I’d been under, who’d gone through the, the  pulmonary, the valve replacement with me and, and everything. And she said, “Oh there is proper channels we need to do, so we’ll go through the proper channels and we’ll see how it goes”. And then within two months I got an appointment to see my original consultant, and I said to him then, “Don’t ever, ever ask me to see anybody else because it won’t happen”. So that would have been ten years ago, nine years ago. I’ve lived here for ten years, so it would have been about nine, eight, nine years ago I went back to him. 




Summary added in April 2016.
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