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Heart failure

Heart failure monitoring: check-ups with health professionals

The National Institute for Health and Clinical Excellence (NICE) has produced guidance about how heart failure should be managed, which includes, in addition to lifestyle advice and drug treatments, regular monitoring of the condition.
 
The frequency of visits to a health professional varied enormously, ranging from yearly to weekly depending on the patient’s needs and local arrangements. Some people we spoke to were managed entirely in general practice, some entirely by hospital specialists, and others by a mixture of professionals from both sectors. Check-ups sometimes took place at the hospital because the person was taking part in a research study. Some people had been admitted and re-admitted to hospital for treatment to stabilise their heart failure, and continued to be looked after by a particular cardiology team. In other cases people’s main point of contact was a specialist heart failure nurse based in the community. GPs who had a special interest in heart disease might hold special clinics either at the local surgery or the hospital, meaning that their patients saw a hospital specialist less often or not at all. In addition, people who had a pacemaker or an ICD periodically attended a download clinic with a technician. Some people said they kept a list of questions to ask at these appointments.
 

Philip sees his GP, cardiologist and specialist nurse several times a year each plus having his ICD checked.

Philip sees his GP, cardiologist and specialist nurse several times a year each plus having his ICD checked.

Age at interview: 52
Sex: Male
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So I have to see the professionals. And I’ll see the GP once every three months and she’ll do all the blood tests and things like that. I see a cardiologist every six months. Because I’ve got a defibrillator— an ICD—I download every three months. Now that can be three times a year from home and then once at the hospital, because they always want to see you at the hospital once a year. When I go to the hospital I will see the heart failure nurse as well. So I’m seen nine times a year, just for my heart and my wellbeing to make sure that the drugs are working and that sort of thing.
 

He has six follow-up appointments a year with his GP, his consultant and a practice nurse.

He has six follow-up appointments a year with his GP, his consultant and a practice nurse.

Age at interview: 65
Sex: Male
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I see my family doctor probably on average 3 times a year and I see my consultant twice a year. So you can say that 5 times a year I am being monitored. There is then a further once when I see the surgery nurse where we have an annual MOT for people with heart condition who will check my height, weight, what medication I'm on, blood pressure, you name it she will check. As would my family doctor if I was a normal patient without any problems where you may only see your family doctor once every five years then I think your family doctor would say, 'Oh yes we haven't seen your blood pressure for some time, we'd better just take it to make sure its OK'. So effectively I am having 6 screenings a year. Between my family doctor, my consultant and the surgery nurse.

Oh yes, quite definitely I find it very reassuring that I am being monitored as I am even to the extent that I have been told both by my family doctor and my consultant if I have any queries get in touch, that's what they're there for. 
 

He sees his cardiologist every 3 months and his GP once a month.

He sees his cardiologist every 3 months and his GP once a month.

Age at interview: 49
Sex: Male
Age at diagnosis: 46
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I actually see my GP once a month now and she's great and hats off to her, a fabulous GP, they take a lot of flak GPs do pretty uncalled for in most cases I think, I've got a good one, a really good one and she's actually mooted that if 'your cardiologist is busy I'll always take on your case load', and I put it to the cardiologist and she said, 'Yeah, great, thank you', you know, the poor devil was snowed under with work. So I see my GP now every month and my cardiologist once every three months now. So it's worked out OK in the end. It's worked out OK.

No, there's a monthly clinic with my GP which was formerly with my cardiologist which was bloods and weights and everything, but no immediately post MI, post discharge, then you have the offer of attending rehab environment. I went once and, each to their own you know, it wasn't for me. I think I was the youngest by 40 years, but it really wasn't for me, and everybody talked about their illnesses, it's the last thing you want to talk about! And if you'd had an MI they'd had two or three, yeah okay fine, so no, I opted out of that one! 
 
Daniel had been considered for a heart transplant in the past before his condition improved; he was still under the care of the transplant team at a specialist hospital as well as a cardiology team at his local hospital and his GP. A 53 year old woman said she was very surprised to be given her treatment in a 'department for the elderly'.
 

As well as seeing a heart failure nurse monthly and a local cardiologist twice a year, Daniel has an in-depth check-up with a transplant team every 3 months.

As well as seeing a heart failure nurse monthly and a local cardiologist twice a year, Daniel has an in-depth check-up with a transplant team every 3 months.

Age at interview: 38
Sex: Male
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I am under the watchful eye of a heart failure nurse and her team. There's a couple of them, who they, I see them about once a month. More if I need them. I can also phone them for advice, and but we'll quite often speak on the phone, and change the pills, my pills, my medication around slightly, just depending on how I'm feeling. And in addition to that I'm monitored probably once every six months by a cardiologist where I live. And that's just a very brief check-up. And then because I'm under a transplant team at another hospital out of the town where I live, I see them once sort of every three months, where they do a more in-depth monitoring. I get ECGs and right heart caths, and a, what's it called? - Echocardiogram. Chest x-ray. That's, that's quite in-depth.
 

She was surprised that she had to attend an appointment in a department for the elderly.

She was surprised that she had to attend an appointment in a department for the elderly.

Age at interview: 53
Sex: Female
Age at diagnosis: 49
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I got home and I still felt quite ill but I took the tablets and by Monday I was feeling absolutely dreadful. I was sick and bad. My husband wanted to phone an ambulance but I wouldn't let him, but the next morning we phoned up the heart failure nurse, the same nurse, told me to come straight into hospital. My husband took me up there and they took me off beta-blockers and put me back on the tablets the doctor had given me. Then the next thing was, I went to see another doctor... about a month later, and was told just to keep taking these tablets.

This went on for about 3 or 4 months I should have said and then I had an appointment to see another doctor, the funny thing was it said 'Surgery for the Elderly' and I was quite annoyed about that! I said to my Mum, 'Will you come with me Mum, they'll think it's you not me?' Because I didn't feel elderly, I still don't feel elderly!

I saw this doctor and he explained to me the tablets I was on was helping me but they wouldn't prolong my life. This gave me a big shock. What did he mean, 'prolong my life'? He said, 'Go on beta-blockers,' and I said, 'No they make ill!' And he said, 'Please go on beta-blockers, it's proven that they will help you. You're still a young person,' (that cheered me up) 'You're still a young person, these will prolong your life'.  

A woman whose heart failure was a consequence of congenital heart disease was particularly attached to a specific consultant at a hospital 400 miles away from where she now lives and she refuses to see anyone else. She travels there at least twice a year and has her pacemaker checked at the same time.
 
Some people had blood samples taken either at hospital or the practice in preparation for consultations with a doctor or a nurse. People who were taking warfarin had regular blood tests to measure their International Normalisation Ratio (INR) (clotting time) done either at a specific hospital warfarin clinic or by a phlebotomist at their local surgery; tests were typically every two to four weeks. One woman had her own INR testing kit for home use.
 
As well as face-to-face consultations some people received automated prompts to provide information about their condition to a professional. Daniel received a weekly text message reminding him to send blood pressure, pulse and weight measurements back to the hospital by text. Anne received a weekly automated telephone call in which she had to press buttons according to whether she was more breathless than usual, her ankles were swollen or she had put on weight.
 

Anne describes the automated weekly phone call she receives to check up on her heart failure signs and symptoms.

Anne describes the automated weekly phone call she receives to check up on her heart failure signs and symptoms.

Age at interview: 73
Sex: Female
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He phones on the dot of 10:00 every Tuesday and he says, “Is that [name]?”—‘cos that’s the way I’m known. (Oh dear, sorry.)  “Is that [name]? If I am speaking to [name] please press one. Hello [name], this is the Heart Clinic calling. I am phoning to find out how you are getting on today.” And then the three questions, you know: “Are you more breathless? If you are not more breathless press one; Are your ankles swollen?’ If your ankles are not more swollen press one”; and if you have put on weight, “If you’ve not put on weight press one”. And then it’s, “Thank you for telling us how you are today. I will phone you again next week. Good bye.” Oh, and “If you have any troubles”, you know, “any difficulties meanwhile phone….” And he gives you a phone number to contact him.

Okay, so it’s just a recorded voice?

Yes, yes and it is picked up on, because once or twice I’ve completely forgotten about it and gone out and missed the call and forgotten about it and not checked up on my recorded missed phone calls, and then later on or the next day, early, I get a call from the nurses saying, “We didn’t pick up the messages that…”, you know, “From the recorded voice. Are you alright?” So it is, it’s efficient. 
Check-ups commonly involved a physical examination, a chat about the person’s condition and their general well-being, plus blood tests and measurement of height, weight and blood pressure. Changes to medication were made by consultants, specialist nurses or GPs, while height, weight, fluid, urine, blood pressure and cholesterol checks were usually done by specialist nurses, practice nurses or unspecified hospital staff. Some people mentioned attending hospital for occasional ECGs, echocardiograms, or other types of scan. Paula mentioned having an exercise tolerance test; Daniel had a right heart catheterisation – a procedure to measure the pressure inside the heart.
 

Robert explains what happens at each of the appointments he attends with different health professionals.

Robert explains what happens at each of the appointments he attends with different health professionals.

Age at interview: 73
Sex: Male
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And how is your condition managed and monitored?

Well, I have a heart failure nurse and she comes from another area, but I see her when I want to see her, ‘cos she runs a drop-in clinic. And I go to another hospital for that.  And in fact, I’m seeing her tomorrow. And I can see her any time, ‘cos I can ring up and either make an appointment or just go and see her at the drop-in clinic. At the surgery, once again they have an annual nurse-led heart failure clinic, which involves, you know, blood pressure, height, weight, advice, medication, things like that. The GP I see quite a lot because I’ve got other conditions on top of the heart failure. But as far as the heart is concerned, at least every six months. And, in fact, when I go and see him about something else, he sometimes takes my blood pressure anyway. And he said, “I think you are in very good, doing very good and in good health apart from the fact that you’ve got a few problems”. I don’t see the cardiologist. If I wanted to I could just ask, ask the heart failure nurse and she would refer me. But she actually works for a cardiologist and, for example, she changed my medication once. And the way she did that was that, they have a meeting every week in the hospital with a cardiologist and she brings up my case to him, and he said, “Yeah, that’s a good idea.” And she changes it. So that’s a full monitoring, as far as I’m concerned. 
 

Brian explains how his GP monitors his heart failure and what he is trying to achieved.

Brian explains how his GP monitors his heart failure and what he is trying to achieved.

Age at interview: 76
Sex: Male
Age at diagnosis: 70
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I mentioned to you earlier that I’d be seeing my present GP for about five or six years having moved into this area in [town]. Prior to that the GP I had used to refer me to the local hospital to see a cardiac specialist. But since I’ve been living here, I’ve seen Dr [name] roughly at three monthly intervals. It’s not always the same. Approximately, annually... he organises an echo cardiogram for me which gives them an up to date picture on whether my condition is deteriorating or remaining stable. Every appointment I have, he checks pulse, which is always the same because I’ve got a pacemaker and blood pressure and I’m fortunate in that my blood pressure has always been at normal levels. And normally asking me questions about whether I have any ankle swelling, breathlessness and all the typical symptoms of heart failure. Now in the event, of course, I probably am in the moderate stage at the moment rather than the advanced stage because I’ve never had any swellings or things like that but he’s checking regularly in order to monitor the rate of deterioration. He also, bearing in mind when I met him, five, six years ago, I was only taking diuretic medication. [Clock chiming in background] He, having diagnosed the heart failure, increased the prescription to, I think, five different items.

Obviously what the doctor has explained to me is he wants to reduce the workload on my heart. Because is so weak he can make it last longer if he reduces the work it has to do so in that respect, reducing blood pressure, reducing blood viscosity, as a matter of interest, my blood pressure is normal but I still have medication to keep the blood pressure down because he doesn’t want to risk that anything that I do pushes the blood pressure up so I do take medication to keep blood pressure down and in terms of blood viscosity , I think aspirin is one of the medications I take which thins the blood somewhat.
 

He sees his GP for follow-up care every 6 months but has seen the practice in between for checks of his blood pressure and kidney function

He sees his GP for follow-up care every 6 months but has seen the practice in between for checks of his blood pressure and kidney function

Age at interview: 64
Sex: Male
Age at diagnosis: 63
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Well my, well I've seen him quite a few times because he was building me up. The doctor, I've been to see him quite a number of times because he built me up on the tablets. But the last time I seen him it was six months ago, almost six months because he said leave it six month and come and see me, which I'm going to do, shortly you know. Oh but I have seen the nurse, the nurse, the nurse there also had like they check up on the heart, I was there last week in fact and they do, check my blood pressure and oh they took blood samples because these, they took blood samples and a water, a sample of water. And they have to check up, apparently you can get liver trouble with some of these tables or kidney problems and that, so they have to keep a tight check on them you now. I have to go back in six months time in fact so that's it you know.

 

Knowledge about what was being measured in blood tests was limited, apart from specific INR tests to determine the dose of the blood-thinning drug warfarin. Some were aware that a range of things were measured but didn’t know the details. Others knew of one particular thing amongst many, such as cholesterol, haemoglobin, or kidney function. One participant complained that the veins in his elbow often collapsed so blood would have to be taken from the back of his hand instead.
 
Specialist nurses sometimes visited people at home, but one man said that he now preferred to see his specialist nurse at the hospital because it gave him a reason to go out. The frequency of visits had reduced since his condition had been brought under control. A man in his eighties said that his GP had visited him once or twice a week at home while optimising his medication regimen, but he had since attended his GP surgery every fortnight and from now on had been told to only visit the GP when he felt a particular need to do so.




Summary added in April 2016.
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