A-Z

Heart failure

Access to health professionals between appointments

It was common for people to be told that they could contact a health professional in between scheduled appointments if they needed to, and many had done so. For some it was an emergency situation, such as suspecting a heart attack, or their nitrate tablets or spray had not cured their angina pain, so they had phoned 999 or gone to A&E or called out their GP from a nearby surgery. Peter said that by calling the GP out of hours service their journey through A&E could be speeded up even if they were not taken in by ambulance.
 

An ambulance had been called for Richard 3 or 4 times because of heart problems before his condition was stabilised.

An ambulance had been called for Richard 3 or 4 times because of heart problems before his condition was stabilised.

Age at interview: 70
Sex: Male
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Generally, I have not had any sudden changes of my symptoms in between seeing my GP  in the last two to three years.  There were times previously when I was not on the current regime that I am now on the tablets, and the patterns of tablets that I was taking were obviously not the optimum for me, and I had several emergency admissions to the local hospital—999 call, and I had got very low blood pressure or I had got something else, and GTN (glyceryl trinitrate) tablets had not cured it. And so, I might have high blood pressure and GTN tablets bring down the blood pressure. But I had still got major heart problems and the people I was with just phoned and got an ambulance. And there were three or four of those over several years, in the years from about 2003, 4, 5 through to about 2010. 

 

If Tim suspects he is having another heart attack he contacts his GP surgery because it is only 5 minutes away and he gets help more quickly than by phoning for an ambulance.

If Tim suspects he is having another heart attack he contacts his GP surgery because it is only 5 minutes away and he gets help more quickly than by phoning for an ambulance.

Age at interview: 53
Sex: Male
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I’ve never seen a specialist now for, an actual specialist on my heart probably for eight years but I know damn well that if I didn’t feel well, which has happened where I’ve had a little bit of pain down my arm, maybe some pins and needles, and I get a little what I call a niggle in my chest, which I’ve felt unsure about, I’ve gone down to my local GP and within five minutes I’m put to a machine and they check my heart to make sure that I’m not having another heart attack. And I know damn well that I can ring the GP up, which has happened, and they’ll be at my house within five minutes, they strap me up to one of these  machines that gives you a, you know, a jolt 

Most of the GPs in this area are first responders and they all, in the cars they carry, I don’t know if is it a defibrillator, it’s one of those machines that gives you a jolt anyway if you’re, and they strap you up to it and then the machine starts talking to you, ‘Please do not touch the patient while I’m arming’, which is a little bit oh [laughter]. But yeah within, within five minutes, I would say, I can have a GP here within general working time, other than that it’s about 20 minutes for an ambulance to get here. 
Specialist nurses often gave out their phone numbers and, while some people we spoke to understood that they could phone the nurse day or night, others understood the nurse was only available during normal office hours. One had called the emergency services instead:
 

He doesn't like to call his heart failure nurse at anti-social hours.

He doesn't like to call his heart failure nurse at anti-social hours.

Age at interview: 56
Sex: Male
Age at diagnosis: 53
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There are limits, its only office. I have got a mobile number but I don't know if it would be..its never been stressed or stated that I should phone at any time so I don't know if I would be abusing the service as such. Because maybe like everyone else... he's not a doctor, when it comes 6 o'clock at night he switches off. He's got a family life, and I've got... anyway so if I'm in real desperate straits I could phone him, but I have been very lucky with emergency services as well. If there is a problem and obviously I'm not the one that phones its my wife, she quite rightly explains the situation then they know... they come quickly.

Oh I think there's times that I, I'm..quite passive with my illness, I will accept it and hang on and hold back. And I said I would never never do that but I do realise that... although things seem very bad for me at times, they're not as bad as what I'm assuming. I know that, I realise that they are part of the illness. And I also realise that I've got all the medication I can get for this, so unless its a drastic event or happening or uh, I should be OK. I should get through to the morning, but I know I can always get the emergency service; I have always had that. It would be great to think there was somebody on call, not in their bed sleeping when you phone them, but sitting at a desk or something, who could serve the same purpose. But that's too much to expect because you can't get a doctor never mind get a specialist.

Daniel, who was under the care of a transplant centre, could phone there and speak to a consultant if he had concerns out of normal working hours, although he wished he could access his local specialist nurse out-of-hours as a short conversation with her would usually reassure him.
 

If he feels poorly Daniel’s first port of call is his specialist nurse but he would like access to her out of normal working hours when he has to call his transplant team instead.

If he feels poorly Daniel’s first port of call is his specialist nurse but he would like access to her out of normal working hours when he has to call his transplant team instead.

Age at interview: 38
Sex: Male
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So if I was to start feeling poorly, and my blood pressure was to drop significantly, then I would, then I would panic and seek help. But in addition to that as well, if I was to hold onto fluid, if I noticed that my ankles were swelling up, or I felt a pressure in my abdomen, which is more normal for me, which is, that's where I hold onto my fluid, I would know that I was holding onto the fluid, and then I would seek medical advice, help as well. 

Who would you contact?

Probably the heart failure nurse at first. But that's only, I can only contact her in normal working hours Monday to Friday. But after that, the transplant centre, straight away, and ask to speak to a consultant.

So you could phone them round the clock, could you?

Yeah. Yeah. If anything significant, they'd just tell me to come straight there.

How quickly do you think you would do that if you were worried? 

Almost, straight away. There's been a few times when I, when I've called them.

What made you do that?

Just because I felt dreadful [laugh].

In what sort of way? Can you describe it?

It's difficult to describe, because I never get pain. It just, when I'm at the lowest and I feel ill, it's almost like having flu, times ten. You feel awful. And then the classic symptoms of heart failure come back, like, you know, you can't lie down on your back without gasping for breath, or you wake up gasping for breath. You feel your heart pounding away and you start to hold onto fluid. 

I don't think there's really much, much more that, that they could do for me, apart from me being assigned, you know, a nurse 24 hours a day, 7 days a week. I think I'm really, really well looked after. Really well monitored. 

The, I do have a gripe, with it being the weekend. If I've got a problem at the weekend, then there's only really the transplant team. The out, out-of-hours obviously the GP surgery you can call. I wouldn’t, and if I want, you know, to, I would want to avoid casualty sometimes. And there's, I can't, there's no heart failure nurse you can call for advice at the weekend. So weekends can be a little bit… I don’t know what the word is.

Do you worry about the weekends, or do you…?

No, I don't worry. But like there's been a few times sometimes when I've felt I've needed to speak to the nurse, and I've not been able to, so I've had to wait until Monday. Sometimes, initially when I was going into heart failure, I suffered with the panic attacks. I've no idea why. Apparently the doctor said it was something to do with the heart rhythms just causing, causing them. But there was also a lot of anxiety involved as well. And when I, when I feel ill, I can feel very anxious. But sometimes, just a five minute conversation with the heart failure nurse can stop that, and I can feel almost really well straight, you know, I can feel better straight away. Just, just a professional voice, just to reassure you, calm you down. But sometimes, obviously I can't always have that at the weekend.
One man phoned his specialist nurse if he needed clarification of test results that he routinely received in writing. Others contacted them if they felt poorly. Those who had access to a specialist nurse who was available day and night and would visit them at home greatly valued having this level of support, one man describing it as a ‘lifeline’. Just having the phone number for a specialist could be a comfort, even if there was no need to call.
 

Feels he can contact his heart failure nurse anytime.

Feels he can contact his heart failure nurse anytime.

Age at interview: 81
Sex: Male
Age at diagnosis: 79
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Well it's just fantastic, I've got a telephone number of her mobile, including her personal mobile number that I can contact her anytime and I have contacted her on a Saturday or a Sunday. I've contacted her when I've felt rough on a couple of occasions and she came up to see me here. When I felt I couldn't get the car out and drive down, it's only down the road, but she's been to see me, she's been like an angel she really has, and she said anytime, anytime I wanted to speak to her to ring her, it didn't matter when, how, even now and I say she's been extremely good.

 

Finds his heart failure nurse extremely helpful and reassuring.

Finds his heart failure nurse extremely helpful and reassuring.

Age at interview: 35
Sex: Male
Age at diagnosis: 35
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I've been allocated a heart failure nurse about 6 or 7 months ago and that was a tremendous help to my case. It's very good to have her number here on my phone. And I told her, I said, "I'm really happy to have your number stored in my phone and I know that there's someone that I can call any time." Although I didn't call her but... you know knowing that there is someone there that you can call any time of the day in case of, you know in case of need. That's very important, very important. And also she monitored the new medication I was prescribed, because of the previous experiences with the Atenolol and the Zocor. So on the new beta blocker she put me on a very low dose, 2mgs a day, and then she now increased it to 50mgs a day gradually. And you know every time I go and see her, almost once a month, she reviews my case, my daily activities and if that has been effective before she starts to increase the dose. Whereas before I used to go to see the doctor and say, "Oh now you're on 50mgs  no that's not enough - you should take 100," and you know he started on the 100 and then the 100 damaged another part of the body. So it was fantastic, I mean she was, she's great and it is a fantastic help. 

 

He finds his heart failure nurse reassuring and honest about his prognosis.

He finds his heart failure nurse reassuring and honest about his prognosis.

Age at interview: 74
Sex: Male
Age at diagnosis: 73
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No, well I was extremely, well of course I didn't have any backup for 7' years but with this new business coming out and being asked, I'm certainly not turning down an offer like that. And as you see over there, there's a volume called 'My Heart' in which I put my weight, you know I do various things for him. My weight and my water consumption and various things like that so that he comes in and has a wee look at it. And it also gives you an awful lot of information and telephone calls and what to do if you think you've got a heart attack and all the rest of it. It's very reassuring.  

I think the things I would like to ask him about heart failure I've already asked the cardiac nurse who was very forthright and I said 'you're a morbid devil, aren't you?' I kind of said what's likely, how's it going to end up and he was quite frank about probably the 2 things that might happen. And put my mind, would you say rest, I don't know? But puts you in an idea of what's, you know you like to know a bit about it.  
 
Some people who didn’t have access to a specialist heart failure nurse had been given the means to contact a cardiac rehabilitation nurse or other hospital staff if necessary between appointments; one said he could talk to the nurses at the warfarin clinic. Those who had implanted devices were able to contact the technicians if they had concerns about how the device was working. One woman lived very close to her hospital and was comforted by knowing that she could get there quickly if she had problems.
 
Contacting their consultant or GP between appointments was another option, which some did when they experienced a new symptom episode. Beth requested a new referral to a cardiologist because a planned follow-up consultation had not happened and she was experiencing a new symptom episode. Although she was being regularly monitored in primary care, she had felt abandoned by the hospital and would prefer to see a specialist heart failure nurse about her heart condition.
 
Although it is relatively easy to make an appointment with a GP, people may still lack confidence about consulting them for things which may seem trivial because they lack awareness of what to look out for. One man said he felt guilty when he contacted the GP about non-specific symptoms, whereas the doctor said she was pleased to see him. Making an appointment to speak to a hospital specialist is more difficult, so being given permission to phone a consultant between appointments was greatly valued. One man said he had felt able to do this with a previous consultant with whom he had a very good relationship, but not with his current one (see ‘Satisfaction with health professionals’).
 

He apologised for bothering his GP when concerned about a bad throat but she was glad because she hadn’t seen him for over two years.

He apologised for bothering his GP when concerned about a bad throat but she was glad because she hadn’t seen him for over two years.

Age at interview: 82
Sex: Male
Age at diagnosis: 72
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But I went to see the doctor just before Christmas, I got um… all clogged up in my throat, and thought to myself, well if there’s something going wrong I don’t want it to happen over Christmas and be a bother to everybody, so I made an appointment. And she said, ‘No, everything’s clear.’ She examined me and so on and she asked, that was when she asked for my cholesterol to be tested, and that came back with a clear report. But and oh yes I apologised, this was coming to your point, I apologised for bothering her and she assured me it was no bother because she said this was the first time she’d seen me for over two years, or any doctor. So, which is very good.
 

She felt that her consultant was particularly accessible because he was involved in a support group that she attended.

She felt that her consultant was particularly accessible because he was involved in a support group that she attended.

Age at interview: 68
Sex: Female
Age at diagnosis: 48
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But because of all the medication I take, it has interfered with my kidneys, so I keep having to take more diuretic and then less. And we can’t quite kind of get it stable, and um over the last fortnight – three weeks - I did start to go into heart failure again. But I’ve got a lovely surgeon, cardiologist, (he’s actually joint president of our group) and he’s always said to me, ‘If ever you don’t feel well, please ring up and come in and see me’. And he also, he’s given me permission to go on to the Coronary Care Unit and talk to patients from a patient’s point of view and to tell them about the support group. And I just happened to be there, and I felt so dreadful that I thought I will go and see if he’s around, and I went into his secretary and she said, ‘He hasn’t got a clinic but he is physician of the week’, so I said, ‘Well don’t worry him’, so she said, ‘No, I’ll get him’, and she found him and he came and he saw me, and we diced around with the diuretics. And it seemed to, over about 5 days, it seemed to abate a bit. 
We asked some people whether they had been advised what to do in the event of worsening or unexpected symptoms.
 

Richard had been advised that if three doses of glyceryl trinitrate spray didn’t stop his angina pain he should phone for an ambulance.

Richard had been advised that if three doses of glyceryl trinitrate spray didn’t stop his angina pain he should phone for an ambulance.

Age at interview: 70
Sex: Male
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Okay, so have your doctors ever given you any instructions about what you should do if you suddenly feel your heart symptoms are getting worse?

I’ve had instructions of that kind, yes. I carry GTN (glyceryl trinitrate) all the time. And I haven’t had any GTN for several years now. The instruction with GTN is  if you get chest pains such as angina then you take two squirts of GTN under your tongue, and then if that doesn’t cure it within five minutes, take two more squirts. If that doesn’t cure it within another five minutes, then at the ten-minute point take two more squirts, and then if it hasn’t cured it by quarter of an hour, phone for an ambulance and straight into hospital. 

What if it wasn’t pain that you were having, what if it was breathlessness or something? 

That’s for chest pain, for angina. 

What if you suddenly felt much more breathless than you do normally, what would you do?

For breathlessness, the basic statement is rest and lie down and get your breath back slowly.

Would you call for help at all?

I’ve never had to call for help for breathlessness, no. But obviously, if I was severely breathless then I suppose, you know, it’s ambulance and into hospital. 
 

Peter’s specialist nurses had told him not to hesitate to seek help if he was at all concerned about symptoms and he wouldn’t be wasting anyone’s time by doing so.

Peter’s specialist nurses had told him not to hesitate to seek help if he was at all concerned about symptoms and he wouldn’t be wasting anyone’s time by doing so.

Age at interview: 67
Sex: Male
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You’ve just described to me what would make you get help what you would do. But has that advice come from health professionals or is it just common sense?

Well, certainly, let me think, well, it’s partly common sense but and obviously talking to others and knowing other people’s experiences, but yeah, the nurses, the specialist nurses, are very open and say, “If there’s any problem whatever, contact us and if you do end up in casualty on your own initiative and been, you know, with chest pain”, and there have been several instances where that hasn’t been a problem but I’ve gone in, didn’t know there wasn’t a problem but, and then you feel, ‘Oh, have I wasted people’s time?’ You speak to the specialists there at casualty and they say you didn’t waste their time. “It wasn’t a mistake and with your background, if you suspect any problems, you come in and you don’t take a risk. You just come in and we’ll understand. We understand.” Sometimes you can ring the GP out of hours service and they’ll, if they feel it’s serious, they can get you into the casualty system quicker than just waiting in the waiting room, even if you’re not an ambulance case. And so you pick up these bits of advice but the specialist nurses at the two areas I’ve mentioned  are, you know, they say, “Don’t hesitate, you can always ring.” 
When asked what would make them seek professional help between scheduled appointments people said that if they experienced unexpected symptoms, a worsening of their condition, or just felt ill, they would contact a specialist or community nurse or their GP or consultant where possible. Some would call the NHS non-emergency number out of hours and one man said if he became extremely breathless he would dial 999.
 

Mike said he would phone his specialist nurse if he was having problems breathing or walking.

Mike said he would phone his specialist nurse if he was having problems breathing or walking.

Age at interview: 69
Sex: Male
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So what would make you seek help now for your heart condition?

If I had, if I was having problems perhaps breathing, or walking, I would phone straight away, you know, I would, like, wait, I, perhaps I’d wait a couple of days but I wouldn’t wait any longer, you know. I’d phone straightaway, you know.

Who would you phone?

I’d phone the cardiac nurse, you know. If I had a problem with my defib then I’d phone the other nurse, you know. But I’d phone the cardiac nurse. If I couldn’t get hold of her I’d phone the GP, you know, and have a chat with him, you know. 
 

Robert had phoned the NHS non-emergency number 111 on several occasions and found it excellent.

Robert had phoned the NHS non-emergency number 111 on several occasions and found it excellent.

Age at interview: 73
Sex: Male
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So what would make you seek medical help for your heart condition?

If I felt very unwell and I thought maybe it was due to the heart, like the breathlessness that I had, which I don’t think was due to the heart, ‘cos I had an infection in my sinuses, and that was a major infection, you know, during the winter. I’m not sure, really. I suppose because you’ve got heart problems you know and you have a feeling when you need to do something about it or seek advice. I’ve used the 111 service I think three times, and they are excellent. And on one occasion when I thought that I had a problem with breathing, I went to the 111 service on a Saturday morning and I had an appointment with the out-of-hours GP clinic that afternoon, which is done at the hospital round here. So I’ve got nothing to worry about as far as that’s concerned. The 111 service down here is excellent, ‘cos it’s run by the ambulance service, so people who talk to you know what they’re talking about, or how to talk to you [laughs]. 



 
Summary added in April 2016.
 
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