Heart failure. You see, if somebody says you’ve got a lump, a cancerous lump or a tumour you know that you physically have got a cancer and it’s in your lung or it’s wherever it is, and it can easily be cut out or it can’t. Heart failure is a wee bit more hazy, it’s not a definite. What causes heart failure? Is it because I’ve got two duff walls in my heart? Is it the leaky valve? What is it? Is it, was it, was it the blocked? Is it a whole… you know? So its a collective title ‘heart failure, whereas that doesn’t really worry me but its not as specific as some illnesses. I think that’s it. Heart failure can cover a lot of things and sometimes its not too serious, sometimes its very serious.

When they first told me, ‘You’ve got heart failure I thought, ‘That’s it, I’m going to die!’ And I said to my own GP, ‘I’ve got heart failure they told me at the hospital,’ and he said, ‘Yes,’ and I said, ‘Will I die?’ And he said, ‘Not necessarily, no of course you won’t. I said, ‘Will I have to have an operation?’ And he said, ‘That is the worse thing that could happen, but you will recover. But I thought heart failure meant your heart had failed and you were going to die. I’ve never, never come across heart failure before. On the television, people have heart failure and they die, I didn’t want to die.

Well I think we have to grasp the nettle and talk about ‘heart failure’ to people. It’s unfortunate but if we don’t do it as informed professionals, possibly someone else is going to and they’re going to get the fright of their life.

I don’t like the term at all, and therefore I would say it almost with inverted commas as I am saying it and then go on immediately to point out the sequence of events that’s left, that that particular patient with some impairment of their heart. Because heart failure rarely comes out of the blue, its usually due to a process that a patient has already been several years living with – a patient who had a heart attack 5 years before, a patient who had angina then a heart attack then a degree of heart failure, a patient perhaps with valvular heart disease, and they’ve had an operation perhaps that didn’t go as well as it should have, and therefore they’re beginning to feel the effects of breathlessness and swelling of their ankles.

And I think its very important at that point to both reassure the patient that this is not a rapidly life threatening condition, but at the same time not overdo the reassurance so that it seems that you’re promising them a normal life span which may not be realistic – in some people I think it probably is realistic – but in many it’s not.

So we’ve got very difficult communication problems to deal with and although I’ve taken an interest in heart failure for many years now I don’t feel that I’m particularly good at breaking this kind of news. There are a few highly trained specialist heart failure nurses who are brilliant at it and I’m hoping to roll out their example to other health professionals so that we all manage to do this much better because this is a process that’s happened when we didn’t use the word ‘cancer’ deliberately in front of patients because we were so scared of using it, and it’s the same with ‘heart failure’, except that ‘failure’ does have such an absolute sound about it, I do wish we’d use a word like’ impairment’ or ‘damage’ or whatever in its place, but perhaps that’s going to come over the next few years.

A heart attack is not the same as heart failure. There is a link of course between having a heart attack and then going into heart failure and the two can be minutes apart or they can be years apart, but the fact is a heart attack is a technical term almost that’s used to denote blockage of an artery in the heart and that’s what happens during a heart attack. And that blockage will cause you some chest pain, it may cause you some breathlessness at the time, it may be life threatening, it may not be. It all depends on the extent of the heart attack. And most people with heart attacks don’t go on to have heart failure there and then, or possibly not at all.

Heart failure is just a very very general term to denote impairment of the heart the beginning of the heart not functioning properly not pushing enough blood around the body, brain everywhere, causing breathlessness, causing a degree of swelling very often in the peripheries, that’s what heart failure is, a heart attack is a sudden severe event – one off, heart failure is a gradually progressive condition.

Yes, I think we need to be very clear about what may prevent heart failure and what heart failure patients actually should be doing in their lives. And I think in both categories exercise has to be a good thing, and when we’re talking about exercise in fit individuals or individuals who want to get fit, we’re talking about 3 at least half hour periods during the week during which they they walk or do something that works up a slight sweat and that’s probably as far as the evidence goes. But beyond that there’s certainly evidence that people who do more and more exercise get fitter and fitter and that this helps to protect their hearts.

With heart failure there are limitations to what people can do, and therefore I think its always best to begin exercise in the context of a cardiac rehabilitation set-up if they’ve got access to it which I think most patients now have.

If we’re looking at other modifiable factors, smoking I have to say is the biggest one and I think people who want to give up smoking and who’ve not had heart failure or any heart problems should do so as soon as possible with the aid probably of a medical professional, it doesn’t have to be a doctor, many health visitors and nurses are involved in actually prescribing medication patches, etc which can help people give up smoking. Once you’ve got heart failure, of course, smoking is doubly bad for you. But I think its true to say that most people who’ve got as far as that no longer smoke.

If we’re talking about the positive messages on food, I would very much emphasise that that is the way to look at it. People have got very hung up on animal fat and, it may be that high intakes of animal fats are bad for the heart. The evidence is actually very difficult to interpret. What we know for sure is that taking your five portions of fresh vegetables or fruit per day definitely helps to prevent heart disease.

Again with alcohol, people get mixed messages, but the message is overwhelmingly that 2 or 3 units per day of alcohol in whatever form, it doesn’t have to be red wine, is protective to the heart, its not damaging, and therefore people – even with heart failure – can drink moderately, the only exception there is if the heart failure itself was caused by highly excessive alcoholic intake in first place. The rest as far as life style goes, I think obesity is the thing that we all struggle to avoid in middle life and that brings us back to exercise, and there again fat – intake of any kind is obviously going to tend to increase our weight unless its part of the highly abnormal diet such as the Atkins Diet and we don’t know what effect that has on the body’s vascular health.

Yes. It’s true that most heart failure is caused by coronary heart disease and therefore the things that tend to cause coronary heart disease may ultimately lead to heart failure, and I think people who have gone into heart failure go back into their minds and think what they could have done to prevent this happening in the first place. And so you get perhaps a mixture of certain self-blame, and a certain amount of excuse making. But I want to really look at it in a different way. I regard smoking as a major cause of heart disease of course, but it’s also one of the worst addictions that you can get into and that people don’t by and large choose to smoke and when they try to stop they find it very difficult, so I think self-blame for smoking is out – people need help. Certainly looking back, smoking must be a major cause in most cases of heart failure due to coronary heart disease.

Again with diet, people blame themselves because they’ve eaten a lot of fat in their lives – the fact is that cholesterol is largely determined by your genetic makeup and what you eat can play a part, but its not what you avoid eating, its what you positively choose to eat in terms of fresh fruit and vegetables and indeed a regular intake of moderate amounts of alcohol. All these are actually protective to the heart. People blame themselves they read that perhaps some heart failure is caused by alcohol, that’s very rare. Much more heart failure is actually prevented by regular sensible drinking.

Exercise’ most of us find it very difficult to fit in a regular programme of exercise in our lives and of course it helps to avoid heart disease, it helps to avoid obesity. It also to some extent helps to avoid blood pressure. So, perhaps that is a modifiable cause and people should try to live healthy lifestyles, but another risk factor is blood pressure and again that’s largely outside the control of most people. People imagine its because they eat the wrong things or because they’re under too much stress – it probably is very little to do with that. So I think there are no modifiable factors that that can lead to heart failure, but I think the attitude that we should take with people who have gone into this condition (which is a very one to live with) is to emphasise the positive, and to work on the things that will actually improve their quality of life in the here and now, and in the future.

I hope actually that the drug regime is going to become simpler rather than more complex because at the moment one of the problems with treating heart failure is that we push all the drugs that we know might help onto every patient. In future I think we’ll be able to be much more selective in the treatments that we give to patients and much more able to actually tell whether those treatments are working properly or not. But apart from medical treatment, there are also pretty exciting prospects for actually for instance unblocking heart arteries, possibly introducing new muscle cells into the wall of the heart to which will grow and help the heart to beat better so its not just more and more drugs for every patient, its more selective drugs and different techniques as well.

Well I think that one of the big problems with heart failure is that people can go from a fairly good case scenario to a fairly bad case scenario pretty quickly and I think this is what, one of the reasons that heart failure needs special attention and particularly understanding on the part of the patient and the professionals looking after the patient, that they’re to report very early any worsening of their symptoms because people with a weakened heart can quite often go rapidly into worsening situations. If we can intervene early in that then you don’t reach the stage where patients get very breathless and distressed, so it’s a zig zag pattern and its not a steady deterioration at all,and I’m amazed actually in my own practice to see patients who are doing really well now five years on from when they were told that maybe they only had a few months to live, and this is quite a common situation. On the other hand one has to be honest about it and say that it is often a life shortening illness and condition. Its not really’ a disease’ as such, it’s a range of illness conditions and in most cases it can shorten your life.

But I’m determined that having heart failure is not going to affect my life. I enjoy my work, I work full-time and I’m not going to stop working. I’m never going to sit down and say, ‘I’ve got heart failure. I can’t do this, I can’t do that. So I’ve made up my mind, ‘Yeah get on with it, get on with your life do what you was going to do anyway!’ And really and truly although I’m not quite so active and heat does affect me, I would say I’m back to how I was before, thanks to the medicines and thanks to a good doctor, and also the heart failure nurses. They are brilliant. Any problems I just phone them up. They’re so..well they’re like you’re friends! They don’t, I don’t feel as if they’re someone I can’t talk to, they are someone I can talk to. Although the consultant is very nice, and I really like him, it’s still the nurses who I think are the best, they really are.

I think taking the tablets is not a worry to me, because I’ve got it under control. At first I didn’t think I’d have to take them all the time, I thought once I got better I could come off them. But once that was explained to me, well what else can you do? It saved my life, so of course I don’t mind taking them.

I think the only thing, I don’t like being put in the bracket ‘Oh shes got a bad heart, let’s let her do, you know, let’s treat her differently. Don’t treat me differently, theres nothing wrong with me! I’ve got a bad heart but I’m living with it. Don’t say, ‘Oh don’t pick that up, don’t do this, don’t do that. I can do what ever I want to, a bit slower perhaps, but I can still do it and I will do it. I can still do my work, and it’s not affected me and I won’t let it affect me. I don’t think about it. I just carry on as normal.

Quality of life is very difficult to define even if you’re a sociologist just specialising in assessing it in people, and I think in medical parlance we do tend to use it incredibly loosely and we assume that we have an insight into the patients’ quality of life, based on perhaps talking to them 5 minutes every 2 months. Peoples’ quality of life depends on an awful lot of other things than their ability to walk briskly up hills. The quality of life of heart failure patients impaired in all kinds of ways and so that not just their quality of life, but the quality of life for the people who care for them, and therefore I think snap decisions made by cardiologists on the basis of treadmill tests and just a few polite questions about you know, do you go out shopping and do you drive etc. can be very very misleading.

I think the more that we look into the actual stories of heart failure patients the more we realise that they that it is a condition that dramatically affects their quality of life and not just their physical quality of life, their mental quality of life, their spiritual quality of life, their social life, their self image, their view of the future – all these things can be very difficult to quantify and perhaps we shouldn’t try to quantify them, perhaps we should just listen to what people are telling us.

I don’t forewarn people about for instance the risk of ‘sudden death’ which is one of the ways that people with heart failure leave this world, because I think it’s a very difficult thing to live with. I don’t necessarily warn people about the inevitability of deterioration because not everybody deteriorates and I think you have to strike a balance between honesty and between working with people’s coping mechanism and you’ve always really got to have an ear open for what the patient herself or himself needs to know, and wants to know and I don’t think any of us always get that right.

Its impossible because it is a natural instinct, but I think the patient who wants to become an informed patient is gradually getting the means to do so and is going to have much better means now that DIPEx is available, but I think there are patients who cope best by what one researcher in heart failure called ‘disavowal’ which means that you know you’ve got the condition but you decide that you’re going to lead your life in the best way you can without thinking about it all the time. And I think that’s probably one of the commonest coping mechanisms that people have – its not denial, they know they’ve got it, they need to be aware that they’ve got it so that if it deteriorates they can call for help, but they don’t let it dominate every aspect of their life all the time, and I think its working with these coping mechanisms that’s one of the biggest challenges of helping people with heart failure.