Specialist heart failure nurses
There is some evidence that follow-up care from nurses specialising in heart failure benefits people coping with heart failure. As yet there is no requirement for local hospitals or GPs to provide specialist nurses in heart failure and most of those we spoke to had no access to such services. Over time specialist nurses have become far more widely deployed.
We asked Helen Jackson, Advanced Nurse Practitioner in heart failure, to help explain the role of specialist heart failure nurses and the specific tasks of ICD nurses who care for heart failure patients fitted with medical devices.
Specialist nurse Helen explains what heart failure nurses do and what they are concerned about when caring for people with heart failure
When someone comes into hospital with heart failure we do our best to find those patients before they go home if possible so that we can review them. Make sure that they are on the right medications, that they have had the right investigations and tests to confirm not only whether they have heart failure but what the particular reason might be for them to have developed heart failure in the first place. There are many reasons why someone can develop heart failure. That can include high blood pressure for many years that causes damage to the heart. Unfortunately high blood pressure doesn’t necessarily have any symptoms at all and so it’s a silent problem. And then only when someone presents with heart failure can it, is it sometimes found that they had high blood pressure untreated for many years.
The other common reason for heart failure is coronary heart disease so furring up of the coronary arteries where there is not enough oxygen-rich blood getting to the heart muscle. So those are the two most common reasons: high blood pressure and coronary heart disease; but people can get heart failure for many other reasons such as heart rhythm abnormalities or valve problems or it can be due to the fact that the person is just getting older and the heart is getting stiffer as they get older.
So as heart failure nurses we are looking at the patient as an individual. Why has this person got heart failure? Then knowing what the best course of treatment is for that person to reduce their symptoms of heart failure which are generally: breathlessness, fatigue, possibly leg swelling, possibly abdominal swelling as well. And we give advice to the patient and explain what the condition is, why they in particular might have it and any lifestyle modification that might be necessary.
So for example, trying not to drink too much fluid each day because they are likely to be on water tablets, diuretics, to make them pass extra fluid so that their body doesn’t become water-logged. When the heart is not able to push blood around the body efficiently the body tends to retain water which can be in the legs or in the lungs and other places. So they are generally on tablets to make them get rid of that extra water and if they are drinking a lot of water on top of that they are kind of undoing the work of the water tablets. So fluid management is a big part of the information we are giving.
And also people are generally worried about how much they can and can’t do with heart failure. And again it’s very individual according to that person as to what we might be advising but it is certainly not a condition where we would say, you have heart failure, you need to sit in a chair and do nothing. It’s very important that the person keeps mobile, keeps as active as possible within their limitations of breathlessness. So if they become breathless we advise them to stop and rest and then carry on once they have recovered.
Specialist nurse Helen talks about what ICD nurses do
His heart failure nurse visits him once a fortnight.
He usually prefers to go to hospital to see his heart failure nurse.
But he'll come here yes. I had very good treatment at first, not that his treatment has lessened any, but the degree... because I have been controlled, or it seems that my illness has been controlled, I see less of him than I did. I would still like to see more of him, but understandably... the resources don't allow that, because I think he's only one of two and he's got so many patients, that I can only see him when and if.
He feels that heart failure nurse care has kept him out of hospital for 2 years.
But basically the system I think is fantastic. It's kept me out of hospital a year, maybe two years, I think, yeah, two years now. I've been in a few times when they take you in for a test or something.
One day I went up to the hospital for my tests, my drug test at the clinic and found my blood pressure was sky high and so they took me in for 24 hours, didn't find a reason for it, it was just one of these things. Between the drug tests and the cardiac nurse I think there's a great system, I think every hospital should have one and a lot of hospital don't have it.
Helen explains how specialist heart failure nurses meet the information, advice and care needs of heart failure patients
Heart failure nurses are important in terms of being an easy contact point for patients so that if they have any concerns or questions and they maybe can’t get an appointment with their GP for a few days it might be something a heart failure nurse could answer and allay their anxieties quickly rather than waiting, worrying for an appointment with their GP. But the GP and heart failure nurses will communicate so that it’s important for the patient to know that there is a joined-up system and that the heart failure nurse will talk to the GP and the cardiologists if necessary so that the patient is getting the best advice and care.
He feels his heart failure nurse explains things to him in depth.
His heart failure nurse has booked him in for a course to help him quit smoking.
So you're just seeing the nurse?
Yes, you know what I mean.
So you're seeing the nurse every 2 weeks and what does she do when you go and see her?
Normally when I see her, it's blood pressure, weight, height, right, generally ask you about your cholesterols, like for instance with me now, with smoking and what have you and how I'm getting on with it and you know, like I say, I'm booked in for a counselling course and what have you. So you know, she's like the liaison and I think she makes all the notes down. So obviously, I suppose the consultants are seeing the notes so obviously if they see something irregular, obviously they would call you in.
He finds his heart failure nurse reassuring and honest about his prognosis.
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.
Specialist nurse Helen talks about the support available to people with ICD’s which varies across the country. She thinks it is important for patients to discuss with their families the prospect of ICD treatment
If someone had a problem with their device and they were feeling unwell, so for example if they received a shock from the device and they were feeling unwell then they should seek emergency help. So dial 999 and come into hospital. If, however, they had a shock from the device and they recovered and they were feeling ok then they should just contact their ICD nurse as soon as possible during normal working hours because they might well need to come in but it wouldn’t be an emergency situation. So if there was a problem and the person is feeling unwell they should seek urgent medical advice. Dial 999.
There is also e-mail contact with nurses as well. Patients can e-mail for advice which is often more convenient for all concerned actually and telephone calls are obviously common.
Ok. I also heard about the education days for the patient and their family?
Yes. Again it varies around the country but in Oxfordshire there is a support group for people with ICD devices, internal defibrillator devices and those people come along and speakers are invited. I’ve gone myself to give a talk about heart failure. Not everybody with an ICD has heart failure but some may. So different cardiologists, nurse specialists, dieticians, pharmacists might come and talk to patients about various aspects about cardiac care. And then there are often support groups as well. There is in our area a patient-run group and they support each other as they are all experiencing similar situations.
I think as well it would be quite good to be able to say about the importance of discussing with family because that person might say, ‘Oh, you know, I don’t know what to do. Tell me what to do,’ to the clinician when in fact the family are the people who know that person very well. So I think if there are any doubts about whether someone is suitable for a device it’s very important that they discuss it with their family anyway actually.
Specialist nurse Helen gives advice on what to do in the event of an ICD shock
When the ICD gives a shock the feeling is described as a kick or a punch in the chest. That’s how it feels. Some people may experience that if they have an abnormal life-threatening heart rhythm and they don’t pass out they may experience that. So they should be aware that that might happen to them. They may have an odd feeling and then receive a hard blow, a feeling of a hard blow to the chest which is the electrical shock going off. If that happens and they do receive a shock and they are aware then obviously the best thing to do is sit or lie down as soon as possible.
If they receive any warning that they are feeling unwell and think they might be about to receive a shock not only sit or lie down if possible but let someone know that you are feeling unwell so that they can be around for you. The difficult thing with this is that they could be in any situation at that time and it could feel quite awkward to be in a shop, for example, and suddenly feel unwell and think they might be about to receive a shock but to just mention to someone who is nearby, ‘Excuse me I’d like to tell you that I am feeling unwell. I’m just going to sit down here a moment. Would you mind just waiting a moment and calling help if necessary’. So that they are not feeling completely alone and frightened at that point in time.
If they do receive a shock and they haven’t been aware of it they may just suddenly wake up on the floor. So they might not have had any preceding symptoms and suddenly just wake up on the floor unexpectedly. So lie there for a few moments, give yourself time to recover and then gradually sit up and then stand up. And then if you are feeling ok call a member of family or someone if you are out and about because you mustn’t drive if you have received a shock from your ICD. You need to call someone to come and help you [deleted]. And if you are feeling ok you just go home [deleted] then you contact the ICD nurse at the next convenient time or when you get home. If that’s within working hours [deleted] or on the following working day.
But if you are feeling unwell you should go to hospital. Call for an ambulance.
Several people said that the specialist nurse service should be extended to cover the whole country and that more money should be allocated for heart failure nurses.
He suggests that heart failure nurses should be available everywhere.
Bruce feels that nurses rather than consultants provide the practical care and advice that patients and their families find helpful.
All the specialist nurses I have found have been very good. They are prepared to spend the time to talk to you and to your wife and answer questions and give practical advice. I had a procedure recently and I was having difficulty afterwards. Rang the specialist nurse and she explained this is something that would happen and it will stop in so many days. If it doesn’t come back. So [ah] that kind of advice and certainly they make sure you have contact telephone numbers and names so that you can go to them and get the advice. I mean I’ve got a lot of respect for the doctors, the consultants but often I find it’s the nurses who can give the practical care and advice [chuckle] that is helpful to the patient and the family.
Last reviewed April 2016.
Last updated April 2016.