So heart failure nurse specialists can be based in hospitals or they can be based in the community. And in some places around the country they actually do both, so they work both in hospital and community. So they visit people at home as well as working in the hospital. In my particular area we have nurses that are purely based in hospital that link up closely with nurses that are purely based in the community visiting patients at home. So the community heart failure nurses might be referred patients from GPs or us as heart failure hospital-based nurses.

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.

ICD nurses work in hospitals and if a patient is identified as being suitable for a device they would go and see that person. Give them verbal information, listen to any concerns that the person might have, be able to answer those questions or if not they will find that information for them and also provide, very importantly, written information so that person has something that they can take away, have time to look at in their own space and think about and discuss with their family. And then once the device is implanted that person is then someone that they know, they’ve already met who can then follow them up afterwards and deal with any concerns or problems they might be having by e-mail, via phone or in clinic situations.

Well mainly it was my local practitioner. Then when they put me onto the consultant, the scene changed, if you like. And now that I’ve got this cardiac nurse coming round who, surprisingly enough… I said, ‘Well do I go and see you or you come to see me? And he said, ‘It doesn’t matter, whichever you like. And I thought, well this is terrific and he is terrific. He comes round about once a fortnight and chats to you and takes your blood, of course, to see how your pills are reacting on your kidneys and things like that, which I need. He will tell you why hes doing that and I can ask him any question I like, and hes very honest and gives me good honest answers, which I’m sure, to the best of his ability, are right.

Yes, well he does come out yes and recently because I complained because I’m stuck in too often and go and see him. Obviously if I wasn’t well enough I wouldn’t go, but it gives me an excuse for what should usually be a 5 minute drive and maybe a half hour, and I’ll get half hour, I’ll get longer if I need to be, consultation. It takes me a wee while longer by the time I walk places and go upstairs. It’s almost like an outing for me to go and see him, so I prefer to go up to hospital and see him. It kind of gives me something to do.

But hell 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 hes only one of two and hes got so many patients, that I can only see him when and if.

The nurse that comes out just now, shell come out and take my bloods and the IMR take them back to the hospital. Shes usually here about 10 o’clock in the morning, and by 4 o’clock I’ve got the results from the hospital, blood test results she phones me up that day and tells me everythings fine, or if I’m a wee bit off she usually speaks to the consultant as well at the time, and hell say well you know put the water tablets up or cut them back, try something else.

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 theres a great system, I think every hospital should have one and a lot of hospital don’t have it.

Usually if someone has come into hospital with heart failure they have been feeling pretty unwell so we don’t want to overload them with information. So we will give concise information and then written information so that they can take that away and think about it, have time to read it in their own time and discuss it with family members as well so they can also read the information. And for some of those people cardiac rehabilitation classes might be very helpful too but if possible we will refer them to the community heart failure nurses but unfortunately not all people with all types of heart failure are able to access that service in which case we might bring them back to our own clinic in hospital or we might refer them to a cardiologist if we think that they need extra, further information or assessment.

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.

I do see my cardiac nurse, the good thing about that is I do I’ve got a telephone number, I can be in contact any time during the day, and if I’ve got a problem, I can explain my problem to him and he will come back to me in real terms of what its about, and explain to me what I understand and… really, it can be in-depth if you like. Because, but it’s relative to the heart my problems, whereas doctors have only got a glib understanding of what’s going on, they’ve got what’s in the books, but they’ve got no experiences to rely on. Where [nurse] will have picked up from, my cardiac nurse will have picked up from other patients, things like as I said earlier ‘mother’s remedies’, things that the medical profession don’t have written in stone but which are relevant and seen to be relevant. Uh, it’s a very reassuring.

Well, how it works up here. I have an appointment at my hospital every 2 weeks to see the one British Heart people, right. And they’re the ones that are giving me the beta-blockers to slow the rate down and I’m supposed to be going up in percentage, I’ve reached like 3.5 now and I’m supposed to be on 10 eventually. But you know, it’s a process that you take gradually, it’s up to you, you know what I mean? It’s up to your body how it responds and what have you. But apart from that, that is basically, that’s it. The only person I’m seeing, not even the consultant when I was hospital, none of the people really am I seeing.

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, shes 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.

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, theres 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.

So the availability of help and support for patients with these devices will vary across the country. In some places I understand there are 24-hour helplines. Certainly in Oxfordshire we don’t have that but there is a nurse available for queries and concerns during normal working hours.

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.

Ok.

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.

So if someone with an ICD receives a shock it will be because the heart has gone into an abnormal fast life-threatening rhythm. If the heart does go into an abnormal life-threatening rhythm some people may pass out very quickly. If the person is aware that there might be a problem, say for example they start to feel dizzy or unwell it’s very important that they sit down or lie down if possible so that if the ICD should give them a shock they are safe and they are not going to fall over and hurt themselves potentially.

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.

It’s just the breathlessness and you do get a lot of fluid. It’s frightening after you’ve had a heart attack. The first few weeks of getting over the heart attack are frightening because you can’t do anything, basically. I get cramp or I used to get cramp all the while and they gave me this spray and I never used to use it because I thought it was just cramp but they said, ‘No, these are little angina attacks, you have to use the spray. It will help take the pressure off your heart. What we really need is more like what I’m in now, this Community Heart Project, that needs to be all over the country really, to be honest. I know the nurse that I go to see, shes rushed off her feet. Theres only two of them in [place name] and shes rushed off her feet. And shes just got, and it was like a trial thing and she had to go to [place name] and tell everyone what was happening and all this and they gave her another year’s funding for something, to expand it and put five more people. Really it needs to be carried on all over the country because it’s very, it’s a relief just to be able to ring someone up and say, you know this is happening to me what can I do? And shes there.

That’s right. Yes but if anything happens that I feel I need advice I can contact the specialist nurse and talk to her and I am sure if necessary I could go over, sit down with her and discuss things or shed arrange for me to talk to a specialist in whatever field my question was but I haven’t had need for that.

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.