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.

If people have cardiac problems that require the defibrillator they will be plugged into a cardiac rehab service and the cardiac rehab service generally focus on the lifestyle side of things: So how to keep your heart healthy; How to reduce the risk of a further event, whatever that might be whether it’s been a heart attack or just a heart rhythm problem.

So the cardiac rehabilitation service is for patients who have come into hospital with a cardiac event and they would like further information and support about keeping their heart as healthy as possible. So it varies across the country as to what service there is but in our local area we have education sessions that run. So that is coming to a group session and listening to people giving information about keeping a healthy heart. So that could be experts in exercise physiology, so giving exercise and activity advice. It could be a pharmacist. It could be a nurse talking about medications. It could be talking about diet, exercise those sorts of things. So there are those education classes. Those are available usually for people with, who have had heart attacks, heart surgery and heart failure. So people who have devices would certainly be included in that service. It would be available to them. [This is available in Oxfordshire, but access to cardiac rehab for all these groups will vary around the country].

There are also exercise classes that are available. Sometimes they are provided in hospitals. Sometimes they are provided in local leisure centres. So in Oxfordshire there is a hospital-based cardiac rehab class and there are also four leisure centres around the county that provide these exercise sessions. And those sessions are staffed by exercise physiologists so people who have had specialist training in exercise in conjunction with heart disease. So they do know about the conditions and cardiac nurses, very experienced cardiac nurses. They carry with them a full emergency kit so that if any problems should arise with the heart during the exercise programme that they have equipment there to help the patient and get them quickly to hospital if that is necessary.

Ok. So and these programmes are for how long?

The length of the programmes vary but generally they are between 8 and 12 weeks and the ideal is that after that 8 or 12 weeks that the person can be introduced to someone who can carry on with their lifelong exercise programme based in local gyms and that is referred to as Phase 4 cardiac rehabilitation.
Phase 3 cardiac rehabilitation is where someone has had an admission to hospital with a cardiac problem and then they are starting a rehab programme based on that.

They [exercise programmes] are very individualised?

Very and the exercise programme, perhaps exercise is not quite the right word in a sense because for some people if it’s a young person that a heart attack has happened to that it may be very appropriate for them to be running on a treadmill or cycling very hard in the gym with the team helping support them gradually increase what they are doing with the knowledge that they have people who understand their condition around them and can deal with anything that might happen and that it is safe prescription of exercise. But also there might be people in that class who have quite severe heart failure and can just about manage to potter around the house. But it is still appropriate for them in some situations because the exercise programmes are very tailored to the individual. They might only be able to manage seated exercise but even so it is still worth doing because it will help keep upper body strength and general movement ability. It is very important to keep mobile when you are very debilitated with heart failure. So a huge range of abilities can benefit from cardiac rehabilitation.

And your nurse can advise the patient?

That’s right. So at each class, the class begins with a check-in with the person. How are you today? What’s been going on with you for the last week?’ and/or however long it’s been since their last session. Checking their blood pressure, their pulse and generally seeing whether they feel that they are suitable to exercise today. If not it might involve contacting the GP with the patient’s permission if they think that medication changes might need to happen. So it’s a really useful check on how they are doing as well as a useful exercise facility.

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.

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.

So the benefits hopefully if the patient has heart failure and they’ve had a CRT device then hopefully they would feel less breathless. They might have less leg swelling. They might find that they can do more than they were able to do, so walk further for example. And just feel that they have more energy because the device is helping with what we call the cardiac output, the amount of blood that is available to the body in each minute that is pumped out.

What are the kinds of concerns or problems that some patients bring with them to a clinic?

Sometimes people can find the device a little bit uncomfortable. Although the device is placed under a muscle layer underneath the bone that goes across the top of the chest here it should feel fairly comfortable once the person is used to it being there but some people do find that they are aware of it and sometimes sleeping in their normal position may not be as comfortable because they are aware of the device within their chest.

Sometimes there are technical problems with the devices for example the lead may fracture and not be working properly.

And some people who have devices actually struggle just with the idea that they have a device in their body that their life may depend on. And that can have an enormous psychological impact and can cause quite a lot of anxiety and concern.

How do health professionals deal with those emotional problems?

Well I think the most important thing is that before the device is implanted those things are discussed and the person has time to think about the implications and to think about how they as an individual are likely to feel once the device is in. It is possible to remove the device in extreme circumstances if it is causing a lot of distress but that would ideally be avoided by a thoughtful decision in the first place as to whether that person is suitable for a device.

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.

If someone has heart failure it may be that they are at risk of abnormal heart rhythms that could threaten their life. If that is the case they might be suitable for a particular device called an internal cardioverter defibrillator and it is known as an ICD. That device is fitted under the skin usually around shoulder height.

The device is about the size, slightly larger than a matchbox and has a wire which goes into the heart through a vein underneath the chest wall there and threads into the right side of the heart. If the heart should go into a life-threatening rhythm, an abnormal heart rhythm, then the device will detect that and give a shock. It will deliver a shock into the heart which should reset the rhythm back to normal.

Ok. So that is how an ICD works?

It is. So an ICD will sit in your heart. The detector wire will sit in your heart and will just watch. It does nothing else but watch, see what is going on and will only do something if there is a problem. So if your heart is in a life-threatening rhythm, abnormal rhythm, it will deliver a shock. But it also has the facility to pace the heart as well, just give an electrical impulse that is rapid and above the rate that the person’s own heart is beating at. So if the heart should beat between 60 and 100 beats per minute and the heart suddenly goes into a rhythm where it’s beating at 140 beats per minute then there is a facility called anti-tachycardia pacing which means that the device will give an electrical impulse at more than 140 beats per minute for example and then gradually bring down the rate so that it is bringing the heart back down to a normal rate range.

So for patients who have heart failure when they have had medications to treat that condition and they are at the maximum doses that are suitable for that person and yet they are still symptomatic. They might still be very tired and they still be very breathless. Then there is a particular type of pacemaker which can help in this situation. The name of that is cardiac resynchronisation therapy, CRT is known as. That is a special pacemaker where a small box about the size of a large matchbox is placed in the upper chest under the skin. A wire is fed through a vein into the heart and one wire is fed down to the right side of the heart and another wire is fed to the left side of the heart through a vein. It can help because with heart failure sometimes the heart is not pumping exactly synchronously. Left and right side of the heart are not pumping at exactly the same time. CRT can help because if the box delivers an electrical impulse to right and left sides of the heart at exactly the same moment the left and right side of the heart will beat at exactly the same moment. And so the movement of the heart is normalised and it helps to produce a better push of blood out to the body with each beat. So that device can just be simply a pacemaker in which case it’s known as a CRT-P device or it can also deliver a shock if necessary, if the heart should go into an abnormal heart rhythm, CRT-D.

So if the heart goes into a fast abnormal heart rhythm this device (CRT-D) will detect that and can deliver a shock if necessary or it can pace at a much faster rate, so delivering electrical impulses to make the heart beat at a faster rate than the life-threatening rhythm and then gradually bring the rate down to a normal rate again. So that’s called anti-tachycardia pacing. So a CRT device may be just a pacemaker or it may also contain the potential to deliver a shock in a life-threatening situation as well and that is called CRT-D if defibrillator is part of the function of that device.

But it is important to say that CRT devices in patients with heart failure are only successful in improving symptoms in about two-thirds of cases. So the majority of people do benefit from it but by no means almost everyone. So it is something that would need careful consideration before going ahead.

What aftercare is available after an ICD or CRT device is implanted?

Once the device is implanted usually that person will come back for a check at six to eight weeks to make sure that everything is working ok. But on discharge from hospital there will be a contact number given as well to contact the specialist nurse in case there is a problem or a concern or a question. So a 6- to 8-week follow up usually back at the hospital. If everything is ok then usually 6-monthly and then yearly but it is possible actually to have the device checked remotely. As long as the person has a BT line then it is possible to have that check remotely and not have to come into the hospital. Having said that, those remote checks are helpful and can reduce the amount of inconvenience for the patient coming back to the hospital but it is important they are actually physically seen at least once a year.