The process of seeking help

To help to avoid delays in admission, health information on MI should:

• emphasise the breadth of possible symptoms of MI, including that the presentation may be different in women
• educate about the range of possible causes for MI and the fact that it can occur in young, fit and physically active people with healthy lifestyles
• recognise that social embarrassment may lead some patients to normalise their symptoms or wait for them to pass even when they suspect a heart attack
• emphasise that delayed admission reduces treatment options and success.

When patients seek help for MI, health professionals and their gatekeepers need to:

• Be aware that many patients will use their local surgery and GP as the first port-of-call in an emergency.
  • Patients who seek help from their local surgery or GP risk additional delays in admission due to appointment waiting times and the risk of misdiagnoses.
• Be sensitive to the possibility that patients may understate symptoms.
  • Symptoms may not be those conventionally associated with heart attack; patients may lack knowledge and vocabulary to describe symptoms with confidence. Even patients who suspect a heart attack may be reluctant to self-diagnose out of respect for the medical authority and expertise of doctors.
• Understand why continuity of care is valued by patients.
  • Personal knowledge of patients and their circumstances can enable health professionals to spot emergencies beyond the factual information available at the time.
  • Some patients with a personal GP who had known them for some time reported that they had benefited from their GP’s clinical intuition and were admitted very quickly.
• Bear in mind that patients who live alone may be at particular risk of seeking help late.
  • Partners and family play a vital role in the process of seeking help. Most patients speak to a partner or family member before contacting a health professional, and, frequently, the decision to seek help is made and executed by a partner or family member.

Receiving the diagnosis

When communicating the diagnosis of MI, health professionals should:

• Be mindful that patients may attach very different meanings to diagnosis depending on their unique situation and level of understanding as well as their age and stage of life.
  • Many patients are initially very frightened and think that they might die. At the other extreme, patients with very mild symptoms and no pain may fail to appreciate the severity of MI, especially if they are able to return home very quickly.
• Aim to answer patients’ questions in a manner that conveys hope and empathy alongside medical accuracy.
  • Patients usually appreciate explicit and honest communication about their chances of survival, especially if they are brave enough to have asked the question.
• Offer to talk to the patient’s partner or family members about the diagnosis.
  • Answering their initial questions, recommending websites and other resources (and providing or directing towards emotional support if needed) helps to take pressure off the patient at a time when they are likely to feel very vulnerable.
• Be mindful that patients’ emotional response to diagnosis develops and changes over time.
  • Patients those who appear calm and as if they are coping well may nevertheless require psychological support at a later stage.

Experience of the hospital environment

Health professionals can make a positive difference to patients’ experience of the hospital environment by:

• Being aware that the technical equipment of the cardiac unit might be perceived as threatening by some patients.
  • Simple explanations and allowing patients access to objects or services (such as a mobile telephone) that give them a sense of normality in the unfamiliar environment helps to put patients at ease.
• Providing friendly gestures and words of encouragement.
  • Small things like a chat at the bedside or a cup of tea during the night can help greatly to alleviate anxiety.
• Taking time to explain diagnostic procedures, interventions and drug regimens.
  • Explaining treatment decisions to patients in more detail may provide an additional safeguard against mix-ups due to miscommunication and human error.
• Being observant about how patients may be affected by the presence and behaviours of other patients on the ward.
  • Witnessing and interacting with other MI patients on the ward can be a source of support but also a source of stress for patients, particularly when a fellow patient dies.

Information about diagnostic procedures, surgery and medication

To improve patients’ experience of treatment, health professionals should:

• Routinely provide information about risks, benefits and possible outcomes of treatments, and whether or not there are any alternative treatments.
  • Feeling well informed about what will or might happen can help to alleviate patient fears and uncertainty.
• Consider the possible effects that a patient’s surgery may have on their partner and children.
  • Procedures which last longer than expected can be very worrying for family and friends who are waiting for news. Be aware of their need for information and support.
• Make an effort to answer questions fully and check that explanations are provided at a level that the patient can understand.
• Make eye contact, avoid talking about patients in the third person in their presence and aim to create an atmosphere that allows for genuine dialogue.
• Be aware that patients’ information preferences may differ in terms of the amount of technical detail or actual procedures they want to know or see.

Preparation for discharge

When preparing patients for their return home from hospital health professionals should:

• Provide patients with a written, individualised debrief about what happened to them at the hospital.
  • This may be helpful especially if the care pathway involved complications and uncertainties about treatment alternatives. A better understanding of why they had a heart attack and what happened to them during hospital treatment may be important to help patients explain to family and others what has happened to them (thus improving public understanding about MI) in their emotional adjustment. (See also Part 6: the emotional impact of myocardial infarction for patients and their families.)
• Make sure patients feel confident about their medication regimen and have easy access to someone they can contact in case of problems or questions.
  • Side effects from medicines are not uncommon and are often unexpected. Lack of knowledge about possible side effects causes avoidable anxiety and can lead patients to stop taking their medicines without advice from a doctor.
• Provide opportunities for patients to self-administer sprays or other medications while they are still in hospital.
  • This may help to spot potential problems, especially with devices that are tricky to use, build patients’ confidence and prevent mishaps once they have returned home.
• Exploit opportunities for confidence building and setting up positive expectations for recovery while patients are in hospital.
  • What happens during the time spent in hospital can have an important influence on patients’ orientation to secondary prevention and their motivation to make necessary lifestyle changes once they have returned home.
• Consider the information and support needs of the patient’s partner.
  • Partners are likely to need reassurance about the range of activities which are safe for patients to engage in. Where possible, partners should be involved in rehabilitation and lifestyle advice. (See also Part 8: patients’ information and support needs in making lifestyle changes)
• Inform patients and their partners about peer support, locally and online.
• Be aware that patients of all ages may have their own caring responsibilities (for children, partners or even parents).

The emotional impact of myocardial infarction for patients and their families

When identifying the support needs of MI patients and their families, health professionals should:

• Be aware that some individuals may have a great need for repeated reassurance.
  • Patients describe the emotional aftermath of their MI as a severe loss of confidence; reassurance is needed especially in the first days and weeks after returning home.
• Explore patients’ and family members’ possible fears regarding a repeat MI.
  • Unaddressed, such fears may lead patients to avoid physical activities or things they previously enjoyed and lead to negative spiral of avoidance and low mood. (See also Part 7: regaining body confidence: patients’ experiences of physical rehabilitation)
• Prepare patients and their partners about the possible emotional impact of MI on the relationship.
  • Partners and patients may need to be prepared to cope with tensions, short tempers and frustrations due to a combination of anxiety, reactions to treatment and partners who might be perceived as ‘overworrying’.
• Offer reassurance and advice to both partners on the safety of sexual activity.
  • Alongside information, some patients may also need emotional support to rebuild their sexual confidence.
• Ensure that patients’ emotional support needs are routinely assessed as part of their follow-up care.
  • Some patients may need professional psychological support that goes beyond the scope of what health professionals or peer-support groups can provide.

Key questions

What is happening to me?

Could this be a heart attack?

Could someone like me have a heart attack?

Where should I seek help?

Key emotions

Fear, embarrassment, uncertainty.

When experiencing symptoms of MI, patients may delay seeking medical help for a number of reasons:

One main and well-researched reason is misattribution of symptoms: if the experienced symptoms do not fit the patient’s idea of ‘a typical heart attack’ – usually imagined as a sudden-onset severe pain in the left side of the arm and upper body – they may find alternative explanations, such as indigestion or back pain, and wait for symptoms to pass.⁹⁶ Women, younger people and those with active lifestyles are especially unlikely to consider themselves as possible candidates for MI.

In this study, only one-third of the patients suspected that their symptoms might be related to heart trouble (Figure 11). Many others ‘normalised’ their symptoms and hoped that they might disappear again given time. (In a few cases, this actually happened and patients only learned weeks or months later that they had previously experienced a ‘silent MI’.) One man told how he ‘tested’ himself for MI by running up and down the stairs and was falsely reassured when this did not affect his symptoms.

FIGURE 11

Recognising the symptoms of MI. Number in shape: participant interview ID number. Participant sex is indicated by shape fill colour (blue = male; green = female). Participant age at diagnosis is indicated by shape form (more...)

I didn’t actually suspect there was anything wrong with my heart; I thought I had a backache, a back problem. [. . .] I was still playing football on a Saturday and I used to get some pain during that but it was across my shoulders and up here, and I’d always – you know you see the films and people have heart attacks, clutch their chest, or their breast and fall to the floor. So looking back I don’t really know whether I really did think there might be a problem and that I’ve just chosen to forget it. Because I do remember at work running up the stairs to see if it got worse because I knew [laughs], I knew that would bring something on and then when it didn’t, I thought, ‘well I must be all right then, it must be my back’.

HA11, male, MI in 1999 aged 42 years

One woman dismissed the possibility of MI because the pain she felt was on the right rather than the left side of her body.

[My husband] and got me some indigestion tablets. It didn’t work. I took a [pain killer] tablet which usually knocks me out. No. So all night I was up with this pain, on and off and he was rubbing my back, and he kept saying to me ‘Are you sure you’re not having a heart attack?’ And I said ‘No, it’s the wrong side’.

HA03, female, MI 1998 aged 53 years

There is a considerable literature about delays in help-seeking, and normalisation and symptom misattribution have been well documented in previous qualitative work.⁹⁷

While improved public education about the breadth of possible symptoms of MI and the fact that a broad range of people can be at risk may be helpful, symptom recognition is only one of the factors that accounts for delays in help-seeking.⁹⁸ Alongside uncertainties about what a heart attack can feel like, another reason why patients delay seeking help promptly is acute social embarrassment. Having a heart attack constitutes a highly disruptive social event which renders the person experiencing it in the role of a helpless victim. In this study, several patients, all male, said that they had delayed seeking help because they did not want to ‘make a fuss’. The following quote is from a man who described his reluctance to call an ambulance to his holiday hotel.

I suppose in the back of my mind I thought, ‘well, this could be a heart attack but surely it’s worse than that’. Like I said about Rowan Atkinson, that was all I knew about heart attacks. [. . .] So [my wife] said, ‘We’re going to phone NHS Direct. [. . .] After I described the symptoms she said, ‘it sounds to me as if you’ve had a heart attack’, I said, ‘no, no I haven’t, I couldn’t possibly have had a heart attack’ [. . .] and she said ‘I think you better dial 999,’ I said ‘well I’m certainly not doing that’. [. . .] The commotion, the commotion of it and thinking, it was a small guest house type of hotel and you know I could imagine the lights flashing because it was a busy road and there was ambulances flashing all the time you know. It was the drama of it and I didn’t feel it was that bad to be honest. So I left it and [um] slept a bit I suppose and next morning we were going home anyway.

HA14, male, MI in 2003 aged 51 years

Gender differences in seeking help for MI are well documented in previous qualitative research^99–101 and interventions to promote prompt help-seeking for MI need to take account of this. Both men and women delay seeking help, but for different reasons. Qualitative research has also explored other gender-specific factors that may delay hospital admission.^33,102,103 Women are more likely to experience atypical symptoms, and are at greater risk of being misdiagnosed. Women may also be taken less seriously by health professionals due to less assertive self-presentation in medical encounters.

One woman told how she was repeatedly admitted to hospital but then discharged without intervention because her electrocardiograms (ECGs) and blood tests appeared normal. She had an angiogram only after her third admission and then promptly received surgery.

And then when I think we went back a third time and went all through the casualty admissions again that there were a set of doctors who were still not prepared to do very much. Then one doctor came along, and I will thank him for the rest of my life, and insisted that three times was too much. And actually he was the one who pushed further in to the problem. [. . .] So I did feel that I wished they’d have listened to me a little more. I felt that three times was enough for them to listen to me. I knew in my heart there was something wrong, oh, that’s a pun isn’t it [laughs]. It just seems as if the nurses were more aware of actual people’s feelings and more aware of what was going on with me.

HA22, female, MI in 2003 aged 63 years

The decision to seek help is a complex and incremental process and the event of an ‘emergency’ is coconstructed by multiple audiences rather than arrived at by the patient in isolation.¹⁰⁴ Partners (or in some cases other family members or coworkers) were described as having played a major role in encouraging the patient to seek help for initial symptoms. Some patients were unaware that delayed admission is likely to result in reduced treatment options and decreased treatment success. Partners frequently pushed their symptomatic spouse to seek medical help or made a call to the GP or emergency service at their own initiative.

Had my tea, didn’t feel well. Went in to the front room. Chest pains started and my arm started the pain and then my wife who was a nurse sort of said to me, ‘lift up your arm over your head’ and ‘did that relieve it?’ ‘No, pain was getting worse’. So I made my way upstairs. Got ready for bed and by that time I got to the bed, my wife had phoned for an ambulance and. I was taken in to [the local hospital].

HA06, male, MI in 1996 aged 70 years

Some patients specifically instructed their partner to call for help, thus effectively relying on someone else to make the case for an emergency response on their behalf. Patients who live alone and do not have this option and support might be at particular risk of delay in getting help.

In this interview study, few patients and spouses directly called for an ambulance. Even in cases where patients themselves suspected MI, several still chose to consult a GP first (Figure 12, yellow-bordered). Some patients who sought help from their local surgery or GP experienced additional delays due to appointment waiting times and the risk of misdiagnoses (see Figure 12, red-bordered).

FIGURE 12

Delays in hospital admission. Number in shape: participant interview ID number. Participant sex is indicated by shape fill colour (blue = male; green = female). Participant age at diagnosis is indicated by shape form (square = diagnosed (more...)

Patients whose GPs knew them well sometimes felt that knowledge of their general health, typical health behaviour and personality had helped the GP to realise that that something could be seriously wrong. In the following account, the GP had picked up that the man’s wife was very worried when they spoke on the phone.

One morning [I was] waking up and just not feeling well at all and of course my wife has always been a person who could recognise when I wasn’t well and she said, ‘You’re not well?’ I says, ‘No’. She says, ‘I’ll get the doctor’. And that was the occasion when the doctor came, dropped everything at his surgery, was in the middle of surgery and came straight round. But in the meantime he’d alerted the paramedics because he did say, ‘that he’d recognised in her voice that there was something seriously wrong’. He got here, the paramedics virtually followed him and they took me in to hospital again.

HA20, male, MI in 2000 aged 66 years

Patients may struggle to accurately describe their symptoms or may understate their impact. People staffing telephone helplines, receptionists and GPs may need to listen to and question patients very carefully to identify when something is seriously wrong. A man who was admitted several days after his initial MI felt that his symptoms were not taken seriously by an unfamiliar GP.

I do appreciate the difficulties that GPs face and that my own case was particularly deceptive, but [. . .] I still think I should have been referred to hospital as a matter of urgency. If a doctor is presented with a sixty-something life-long smoker, not long retired from a responsible and stressful occupation, who seldom attends the surgery and is obviously very concerned about the kind of pain which shouts ‘heart attack’, then, even though other diagnostic features may conflict, he should be given the benefit of the doubt. [. . .] The common cab rank system in larger group surgeries militates against a doctor getting to know patients. Until he retired, I saw the same doctor very infrequently over about twenty years. I am confident that he would have taken me seriously had he still been in practice. I suppose my experience is exceptional, but I do wonder how many people who are referred to hospital expire before their first consultation. I have now moved to another practice and no longer see this doctor.

HA04, male, had MI in 2002 aged 62 years

Symptoms may not be those conventionally associated with heart attack; patients may lack the knowledge and vocabulary to describe symptoms with confidence. Even those who suspect a heart attack may be reluctant to self-diagnose and instead trust that health professionals will recognise the need for urgent action. One woman who said that she had initially suspected that she might be having a heart attack was reassured when, after describing her symptoms, the receptionist gave her a regular GP appointment.

[My ex-husband] came and I told him and he said, ‘Well, phone the doctor straight away’. So I did and I spoke to the triage nurse and she said, ‘Come in at half past eleven’. This was about half past eight in the morning because there weren’t any appointments. She did ask me to describe the symptoms and everything but obviously they weren’t bad and I didn’t have the crushing pain or anything. I just thought, ‘oh I’m going to have [a heart attack]’. But when she said, ‘Come at half eleven’, I thought, ‘oh I must be alright then’. So I went at half eleven and saw the doctor and he said, ‘I think you’d better go down to the hospital. It’ll be quicker if you’re husband takes you, rather than me calling an ambulance’. [. . .] So I went to the hospital and [um] they admitted me. [. . .] When I spoke to the triage nurse, she did ask me what I would consider the right questions. But whether I gave the wrong answer, I don’t know, I could only tell her what I felt and she obviously felt that it didn’t sound serious enough because to me, it didn’t feel serious enough, other than I did say, ‘I felt funny and I’d never felt that before’. And I think your instinct tells you, this is something you’d never had before. I knew I hadn’t had it before. I knew I’d had indigestion before. But she obviously – she misinterpreted what I was saying, I would say.

HA32, female, MI in 2003 aged 53 years

In another example, a woman in her thirties kept seeking help for 5 months because she was concerned about her irregular heartbeat. She was diagnosed with panic attacks before eventually being admitted for MI. The repeated experience of being told her symptoms were imagined made her doubt herself and caused conflict in her relationship as well as shaking her trust in the medical profession.

I never had an ECG done until I had, the day I had the heart attack, never [. . .] I felt like I was, I knew I wasn’t going mad but they made me feel like I was. They made me feel like I wasn’t normal, you know, and I was thinking, ‘God, why do I keep thinking like this?’ You know, thinking that there was something wrong with the way I was thinking because I was being told there was nothing wrong and then I was thinking, well, to me it feels like there’s something wrong. So I felt, I felt hurt, you know, that, and the day when they give me the, the tablets to like calm me down and so when I, I came home and showed my partner those tablets, you know, he started saying to me, ‘you see, they think you’re mad, you know, you’re imagining it. You’ve got to calm down and stop worrying about it and stop freaking out about it because there’s nothing wrong’. So, you know, that, so it’s not only you haven’t got, it’s like everybody’s against you, you know, you feel like no-one’s taking you seriously. [. . .] But I knew there was something wrong.

HA33, female, MI in 2003 aged 36 years

Key questions

Am I going to die?

Why me? Is this my fault?

If I survive, is my life as I know it over now?

Is there any point in making changes to my life or is it hopeless?

Key emotions

Anxiety, shock, denial, despair, disbelief.

Myocardial infarction can be an extremely frightening and life-threatening event, and many patients initially think that they might die.

I was just lying there and they’d given me a lot of morphine so I wasn’t really aware of things going on around me. All I kept saying to people, like ‘can you help me, can you help me?’ I said. And when the doctor come, at first he said, ‘I think it could be pleurisy’, and I was going, ‘oh no, it’s not pleurisy’. But when, actually another doctor come after that and then she told me, ‘Yes, you’re having a heart attack, [name]. We need to get you to coronary care’. And I was going, ‘Am I going to die? Am I going to die?’

HA03, female, MI in 1998 aged 53 years

Before their MI, many said that their understanding of what happens during a heart attack had been very limited, but that the words carried a sense of dread and, if not death, certainly an end to the kind of lives they had led until then. One woman recalled how, after an ECG, her GP told her that she had experienced a silent MI 5 months previously; she felt ill prepared and shocked by the diagnosis.

It was a huge shock. I remember saying to the doctor, I said ‘Do you realise you’ve just given me a death sentence’. And she was ever so sweet. I was, wasn’t very nice to her, I must be honest, because it was such a shock but there we are. [. . .] I burst into tears. She cried because I cried. She was very, very sweet. She gave me a box of tissues and all that. I just couldn’t speak. I felt as though the bottom had dropped out of my world and that I was going to die the next day. I thought she was going to send me to hospital, which immediately panicked me but she didn’t. There’s no way to describe really how I felt apart from being absolutely devastated.

HA01, female, MI in 2003 aged 62 years

One man said that receiving the diagnosis made him feel even worse than he did before he knew what was wrong.

[At] that time I don’t know this heart attack, but the words ‘heart attack’ that’s very heavy words, you know. Everybody is scared. Before I heard this word I was feeling better, but when the doctors told me that, ‘you’ve had a heart attack and you are a heart patient’ and after that my feeling was not better. Because life [is] falling down, you know. You cannot run, you cannot eat of your choice. You cannot work of your choice, like this, like this, you know. Life [is] very badly disturbed.

HA25, male, MI in 2001 aged 49 years

Other patients described themselves as responding more calmly but experienced similar feelings about the threat of dying and the loss of their previous life.

I suppose it was perfectly typical feelings of shock, and of regret that it happened so soon, or that my life was coming to a completely different phase and that I would be disabled as it were for the rest of my life, however long that would be.

HA09, male, MI in 1995 aged 69 years

At the other extreme, patients with very mild symptoms and no pain may fail to appreciate the severity of MI, especially if they are able to return home very quickly. Health professionals should gauge the patient’s view of the severity of their MI so that they can appropriately reinforce the importance of secondary prevention before discharge (see also Preparation for discharge).

I did not feel ill [when I was admitted]. I knew that at that stage I did not feel capable of doing things that I would’ve been capable of doing beforehand but I could wander quite happily around the hospital without feeling out of breath, without feeling the need to sit down. And I suppose the seriousness of what I had suffered just wasn’t evident to me.

HA10, male, MI in 2003 aged 63 years

I found the second attack much more of a pull up, I did take heed of that one. And the fact that I had a really good GP as well, who calls a spade a spade, he doesn’t go around corners, who said, ‘you have two choices,’ he said, ‘you can go back to work and you can die or you can seek medical retirement and hopefully continue a good standard of life’. So I took notice of him as well. I found it very depressing realising that I was not immortal, but as I say we fought through that and came out of the other end, which was wonderful.

HA08, male, mild MI in 1989 aged 40 years and more severe MI in 2001

Patients usually appreciate explicit and honest communication about their chances of survival, especially if they are brave enough to have asked the question. Conscious of the pressures under which health professionals operate, patients sometimes acknowledged that talking about the possibility of death is a difficult conversation to have for doctors and nurses, too.

Some of them, there are one or two who’ve been very good and sat down and explained stuff to me but most of them aren’t too keen, I think that’s mainly a time issue and some of it’s about it’s because they don’t normally do it, there’s a training, there would be a training issue there. But yes, I must admit it’d be a difficult conversation to have with people, because if you know they’re not going to live very long or they’re likely to suffer, would you be the one that’d want to tell them that?

HA05, male MI in 2001 aged 57 years

Patients’ accounts of receiving the diagnosis illustrate some of the aspects of health professionals’ communication style that they experienced as helpful or less helpful. One man spoke very positively about the clear explanations he had received from the consultant straight after his admission to hospital.

A lot of things then happened very quickly. But one of the things that needed to happen I think, was for the consultant to explain (a) what had happened to me but (b) what was required. What he said was that I had had a heart attack and the next few hours were crucial and what was really important, if possible, was to try and attack the clot that would be in my, the part of the heart that the clot would be in. You know I’m not physiologically terribly well-tuned, I’m afraid. He explained – I mean I was very impressed actually because he squatted down and spoke to me at my level. He explained that there were risks attached to this process [. . .] Every intervention was explained to me. [. . .] And, you know, what was very clearly being stated was that, you know, this was the crucial time, you know, that if they were able to intervene successfully now, then my long term prospects of survival, because I mean, I think there was an explicitness that I wouldn’t necessarily survive. My long term prospects of survival and indeed full recovery, were very importantly conditional upon that.

HA02, male, MI in 2003 aged 54 years

Another woman found it reassuring not only to be prepared for the technicalities of the treatment but also to be told that it was normal to feel tearful and emotional.

As soon as I was there [in hospital] they explained to me I was going to be tearful, it’s a big thing, and they explained all my feelings I was going to have. I’m going to do a lot of crying and they explained that they’re going to put this drug in me to get rid of the clot and everything, they just explained every inch of the way what was happening and how I was going to feel. And they was right, everything they said, they was right and they was there, I mean in the night when I was frightened, they was standing at the side of my bed in the middle of night talking to me for an hour or two. They was absolutely brilliant, they was there answering any question.

HA03, female, MI in 1998 aged 53 years

People in the study described feeling reassured by the calm and professional manner in which health professionals had explained the risks and possible consequences of the planned interventions. Patients value health professionals who manage to convey hope and empathy alongside medical accuracy.

Everybody was perfectly civil and, and answered my questions. [. . .] And when the big cheese came in to the ward and I asked him about my prognosis, he smiled and he said, ‘well look,’ he said, ‘you’re here, you’re asking the question. Forty per cent of people who have their first heart attack don’t live to see the day, the next day. So you’ve survived,’ he said, ‘and it appears you’ve survived the previous one as well’. So that was extremely helpful.

HA09, male, MI in 1995 aged 69 years

However, another man described a less positive encounter; he and his wife had nicknamed a certain consultant ‘Dr Death’ due to his brusque manner when describing the possible risks of bypass surgery.

[The consultant] he also wasn’t convinced I’d actually make it through the, the coronary artery bypass. He was surprised that I’d actually made it through that, so like he’s not the sort of guy you want on a football team to gee you up before a game, ‘Hey lads if you keep it down to 10, you’ll do well’. [laughter] He’s not one of those that you want on your team. I think he’s probably going to think he’s trying to give it like it could be, but he probably overdoes how bad it could be. You don’t want an over realistic view but similarly you don’t want to be told that just ‘Well, no it, you could be dead’, because I think everybody knows if it’s heart, you know, if it’s a serious heart problem, yes of course you could be dead, you wouldn’t be here otherwise, [he] just slightly overplayed it.

HA05, male, MI in 2003 aged 37 years

Patients may respond to a diagnosis of MI in very different ways. Health professionals should be mindful of the different meanings the diagnosis can carry depending on the patient’s unique situation, as well as more evident factors such as their age and stage of life. One older woman said that her overwhelming response to receiving the diagnosis was gratitude to still be alive.

I was really pleased I was here you see because lots of people die in the middle of a heart attack. You ask me how I felt, well I felt pleased to be here, still be alive. I think that’s the main thing, I thought ‘well I got over that one and if there’s any more I’m going to get over that’. And as the doctor said an operation could put it right, which it did. It’s strange, it’s a lot to do with the mind, how you tell yourself how you feel.

HA15, female, heart attack in 2000, aged 81 years

HA09 (quoted above) was also aware, because his doctor told him, that he was one of the lucky ones to have survived a first heart attack. However, many of the younger patients felt anger, shock and disbelief to have had a heart attack. Now that many people do not have children until they are in their late twenties and thirties, it is not uncommon for people in their 40s and 50s to still have dependent children at home. Patients may worry about financial and career implications for themselves and their families. They may have different expectations about length and level of recovery than retired patients in their seventies or eighties, although many older patients may also have caring responsibilities. Younger patients talked about a sense of disbelief and the perception that heart attacks were something they associated with their parents’ generation.

I was petrified. Well, part petrified and part believing that they must have it – it must be wrong, you know, I was in the pub yesterday. This all happened on Saturday, I was in the pub yesterday and I’m – and I don’t feel any worse. And then I did start feeling rotten. But I think the whole consequences of it all were dawning on me. And you know, ‘heart attack’, my dad had had a heart attack but he was seventy odd. But it just didn’t – I just didn’t think it could’ve happened.

HA11, male, MI in 1999 aged 42 years

I felt like the world was coming to an end. You feel absolutely shattered, you know really tired and quite depressed really. [. . .] You know, I was only 47 years old. ‘I’ve got a life.’ You know, I have ambitions to reach 97. And you think ‘Well all this is coming to an end; I’m on my way out. This is what my parents should be doing you know, it’s not where I should be. This is for older people, much older people’.

HA18, MI in 1995 aged 47 years

However, health professionals need to consider patients’ individual life circumstances rather than make assumptions based on age alone. The disruption of MI to daily life may be just as severe for older patients as for younger ones, but their horizons of expectation for recovery and their resources for coping and adjustment may be very different.

Those who considered themselves to have led healthy and physically active lifestyles before their MI may particularly struggle to come to terms with the diagnosis. One man, who found it difficult to accept that someone like him could have had a heart attack in his early fifties, explained that it made him feel better when an even younger patient came onto the ward.

I must admit, I felt depressed when I found out I’d had a heart attack. ‘Why me?’ All my life I’d been working on my feet and I thought I was fit. I thought, ‘Why me? There’s other people who sit down at desks, you know bigger than me, so ‘Why me?’ and I was angry as well, it’s hard to explain. You don’t think you’ve survived and thank god you have, but it was a couple of days later when somebody else came in to the hospital who was younger than me, because everyone else in this ward was older and I was the youngest, and when this person came in who was younger than me, I felt a lot better. It’s a terrible thing to say now, but I did.

HA29, male, MI in 1993 aged 54 years

More detailed explanations about the multiple risk factors for MI might help to dispel risk stereotypes as well as provide explanations which can be repeated to family and friends who are curious about why the MI happened.

Conversely, patients with sedentary lifestyles, unhealthy diets and habits may be sensitive to either spoken or unspoken suggestions that they are to blame for their MI and feel very defeatist about diagnosis. These patients may benefit from empathic education that provides encouragement. Previous qualitative research has illustrated how patients’ early sense-making about the possible causes of their heart attack may impact on their motivation for behaviour change and engagement in secondary prevention over time.

Having to tell partners and family members about the diagnosis, and explain why it happened, can be an additional burden for patients. Many patients in this study described having to tell their family as a very difficult and emotional event. While patients themselves feel vulnerable and struggle to make sense of their diagnosis, having to worry about the reactions of their loved ones causes extra stress. Some patients whose parents were still alive decided not to tell them to protect them from worry.

And the worst part was, was telling people. I had to tell my sister. And obviously she was very upset. I was [. . .] Right so and I, then I phoned husband at work and he came home and I phoned, well it was actually my daughter-in-law I spoke to I, I couldn’t get hold of my son – I’ve three boys and – the youngest. Anyway the daughter-in-law came [um] along with my sister and we sat and we talked about it. I was very, very upset. Couldn’t believe, I couldn’t believe it because I felt so well. And I’d had no, no warning, no sign, no anything.

HA01, female, MI in 2003 aged 63 years

HA02 explained that he was particularly worried about his young daughter’s reaction to learning the diagnosis; he and his wife decided to delay telling her until his condition had improved. A couple of patients said they had found it helpful when hospital staff offered to talk to their children.

I suppose the thing that I’m most worried about actually was the impact upon my nine year old daughter [. . .] Over the last 2 or 3 years the only people that she would have been aware of that had had heart attacks; one was her headmistress’s husband that we knew very well, and he just dropped down dead in the street at about my age. And then last summer her best friend’s father, who was a very fit, 64-year-old professor at the university. He just dropped down dead while in Italy, while on holiday in Italy. Therefore, our concerns were that for [my daughter], heart attacks would be seen as being something that killed you. So initially that evening, my wife, didn’t say to, didn’t say to [my daughter] that I’d had a heart attack. She said ‘you know that daddy had a bad pain this morning, well he had to go to hospital but he’s fine now’. So it was about a day later before [my daughter] was aware that I’d had a heart attack.

HA02, male, MI in 2003 aged 54 years

Especially in situations where diagnosis was not straightforward and patients and their families received mixed or changing messages, this could cause strong feelings of anger and guilt among the family.

My husband, because she’d told me there nothing wrong with me and I was fine, I says to my husband, ‘well you might as well go to work’. So he went to work, well he went home, he fetched my daughter and they come back. He didn’t go to work, he come back. Well, he was bitter because he’d left me and I was having a heart attack. So he felt he’d let me down and I felt he’d let me down because he’d gone, he should have stopped, even though I told him to go. And there was all this, but it really upset him to come and see me all wired up and they’d told him there was nothing wrong with me. So you know, they was crying, my daughter and my husband, and I was crying. It’s very emotional.

HA03, female, MI in 1998 aged 53 years

Patients may also feel ill prepared to answer questions from partners and family members, and value the support of staff to explain things accurately and at the appropriate level. Health professionals should check if patients would like support to inform family and friends and answer their initial questions. Recommendations for websites and other resources are also appreciated by patients and families.

Patients’ emotional responses to diagnosis develop over time; those who seem to be coping well initially may nevertheless require psychological support at a later stage. Some patients said that it had taken several weeks or even months for them to emotionally respond to the diagnosis.

I think I was just stunned [um] to the point where I didn’t, I didn’t fully take it in and I’ve spoken to my doctor since and he said, ‘When, when you came to see me,’ he said, ‘you were so calm and you’d had a heart attack, and you were saying, “oh I think it might be a bit of indigestion”, you were very calm,’ he said, ‘and I think it suddenly hit you after a few weeks and that’s why the anxiety came’. It did suddenly hit me that you know I could have died. But it didn’t affect me at the time, I just got on with it.

HA32, female, MI in 2003 aged 53 years

Well with hindsight, you pick up the terminology and I realise now that you just go in to a state of denial, you just don’t accept it. You just refuse to believe that this is happening to me. I enjoyed super health all my life and I worked until I was sixty-five and this happened within three months of me retiring. It just seems so wrong and you refuse to accept it.

HA28, white male, married, MI aged 65 years

Patients with a very stoic and calm response at the time of diagnosis might also be the ones who put up a front towards friends and family and who avoid seeking out peer support. However, maintaining an image of strength and invincibility over a long time is likely to be emotionally exhausting. Previous qualitative research in this area suggests that patients’ ways of coping continue to be influenced by gender stereotypes.¹⁰⁵ Hegemonic ideals of masculinity mean that men may find it especially difficult to come to terms with the feeling of physical vulnerability that the experience of MI brings (see also Part 6: emotional impact of MI for patients and their families and Part 7: regaining body confidence: patients’ experiences of physical rehabilitation).

Key questions

Who and what will keep me safe?

What happens to other MI patients and what does this mean for me?

How long will I need to stay here?

What can I hope for?

Key emotions

Anxiety, worry, lack of familiarity, trust, gratitude, social comparison.

Patients may experience the hospital environment, and especially the technical equipment of the cardiac unit, as reassuring or threatening, depending on their perspective. Health professionals can help put patients at ease in this unfamiliar environment with a reassuring and flexible attitude. Small things can make a big difference, such as access to a telephone.

[In the cardiac ward] I went into a section which is equipped with full monitoring equipment and I was on various drips and goodness knows what else. It’s an intimidating place to find yourself in because all this monitoring equipment is all, emitting all strange sorts of bleeps and noises and it’s very difficult to relax.

HA10, male, MI in 2003 aged 63 years

I was allowed to sit up and have something to eat, make a few phone calls, which was good because it felt a bit like, more like normality. [. . .] I was able to make phone calls to people, although I think people were quite surprised to hear from me, but it was quite therapeutic, hearing somebody else’s voice.

HA11, male, MI in 1999 aged 42 years

Another patient felt grateful that he was given a private room so that his young family could come and visit him without disturbing other patients.

The first night I was taken off the monitors, I was actually in little separate room which was fortunate because I’ve a big family and, [um] they thought it’d be, because they’d a room would be easier if I was in that rather than in a general ward, which was lovely of them because it meant that people could come and go. Because as I say there’s my wife and my young son, well my young daughter as well, my daughter’s only a year older than me son.

HA05, male, MI in 2003 aged 37 years

Several patients in the study said that the first few hours and the first night after their heart attack had been the most difficult and a time when they had felt very worried that they might die alone without anyone noticing. A few said that they had felt so anxious that they had found it difficult to get any sleep. These patients were extremely grateful for friendly gestures from health professionals such as a cup of tea in the middle of the night, someone holding their hand, a chat or words of encouragement, and said these things had made a huge difference to them.

The first night I was taken off the monitors, I was getting panic attacks [pause], because prior, at least if they’re on, I mean in, in reality if you suddenly go crash, the chance of them actually being there watching probably aren’t that strong really [laugh] anyway. The times they do go bing-bing-bing, and nobody comes [laugh], they’d probably look at you and go ‘Oh, forget that, there’s nothing, nothing really wrong because you usually you’ve just pulled it off or something’, 99 times out of 100 it’s just a technical glitch of course. [um] But the first night I didn’t have them I was really quite worried and I called them a couple of times and they were very understanding and very helpful and they actually give me a, a little bit of a sedative to ultimately to sleep, because I just couldn’t sleep, because you’re just so aware of your heartbeat.

HA05, male, MI in 2001 aged 37 years

I found the staff excellent. I found the staff excellent, you know they said to me ‘you’ll be up and running in a few days you know’. One nurse, an Irish girl if I may say, was on night duty. They used to come down and see me every night about, I used to be awake half the night, and make me a cup of coffee about 3 o’clock in the morning, and we’d have a chat and things like that. They did make life good for me.

HA06, male, MI in 2003 aged 70 years

Patients were aware that hospital staff were very busy and often pressurised for time, so they valued it all the more when doctors or nurses provided emotional support by being available to listen or answer questions.

It was the very attitude of them [that made me feel secure], you know. They were very, they were very caring and they sort of seemed as if they really understood how you were feeling. And I was grateful for that because it wasn’t all this starchy business you know, it was nice. And my family were able to come in and they were around me but I was all wired up to everything you know and that is a bit frightening.

HA35, female, MI in 2001 aged 77 years

Many patients spoke very highly of the coronary care specialist staff. By and large, patients felt a great deal of gratitude and trust in the competence of the health professionals who looked after them. Often this was ascribed to personal characteristics and the manner in which they talked to patients, rather than age, seniority or appearance. One man described how the consultant filled him with trust and made him relax despite the fact that the consultant was covered in blood when they first met.

And within about half an hour of arriving, the consultant came in, introduced himself. He’d just, he must’ve come almost straight from surgery because he had – he looked like a butcher. He had a gown on that was covered [laughs] well it had blood all over it. He said, ‘Oh don’t worry, don’t worry, it’s highly unlikely we’ll have to open you up’. But he had this air about him that I was, you know it was just his actions, his voice. I mean he wasn’t very old, he probably wasn’t much older than me, if at all and he was just, I mean it just made me feel relaxed and felt like I was in good hands and that, all the time that meant so much to me that you know, my trust was in these people and as long as I felt that they knew what they were doing, I was going to be all right and that things weren’t going to get any worse.

HA11, male, MI in 1999 aged 42 years

However, some patients thought that the level of information provision during their hospital stay could have been improved. While those who asked a lot of questions usually got answers, others assumed that they would be told what they needed to know without asking. This did not always happen, for example when staff changed. This man was too preoccupied to think of the questions he might need to ask about his stress test.

Another thing that upset me at the time; you’re allocated a nurse when you first get in to the unit. Now then, that nurse after two or three days, her father was taken seriously ill, so she was stood down. Allocated another nurse. So one nurse didn’t know what the other one had told me and now I know I should have asked questions but you’re not, you withdraw in to yourself. You’re angry at being there. ‘Why me at my age?’ I was only 54, coming up for 55 and when I was discharged and went back several weeks’ time for a stress test, I didn’t know what that was. I didn’t know it was a walking machine or a running machine. I didn’t know because I hadn’t been told and I didn’t know to ask.

HA29, male, MI in 1993 aged 54 years

Those who stayed in hospital for longer periods sometimes found that information provision became more patchy as time went on. Patients appreciate health professionals who take the time to explain diagnostic procedures and interventions, even if they are unable to truly share in the decisions. One man observed that the consultants seemed to vary the amount of information they provided to patients. He addressed doctors by their first names to create an equal atmosphere for communication. He appreciated it when a consultant did a drawing of the heart for him to clarify his explanations.

The thing that struck me because you know, hospitals are not private places so although you have screens round, it’s impossible not to hear other conversations going on. And it struck me that there were different levels of information given by doctors. Some of it maybe on the estimation of what the patient will receive and I think some of it is just to do with the assertiveness of the patient. [. . .] I was always fairly questioning and wanted to find out what was going on. I found that actually a very good technique given that the doctors all call you by your Christian name, was I just called them by their Christian name, you know and it’s sort of a – just as a way of getting equality.

HA02, male, MI in 2003 aged 54 years

The asymmetrical power relationship between patients and senior medical staff can be detrimental to the quality of communication. Health professionals can help to redress this power imbalance by making eye contact, talking to patients at the same level (e.g. sitting down by the bedside rather than standing up) and adjusting their manner of speaking in line with patients’ level of understanding.

Change-over of care between different members of staff could mean that changes in drugs were not adequately communicated. HA05 felt it was advisable to double-check with staff that they were getting the correct medication.

Subsequently and while you’re in, when they’re doing the rounds, etc., I don’t think you get an awful lot of information there. I think they just tend to gloss over things and you, you have to ask, you have to check things, because I’ve had one or two instances of problems with wrong dosages of drugs and things being stopped and yet you ask and, ‘Oh no, we shouldn’t be doing that’, Well, you just have’ and you know . . . Not everybody’s necessarily so aware or, or you know, would ask the right questions.

HA05, male, MI in 2003 aged 37 years

Explaining treatment decisions and drug regimens to patients in more detail may thus provide an additional safeguard against mix-ups due to miscommunication and human error.

During their stay on a cardiac ward, patients invariably come into close contact with other coronary care patients. Meeting other patients and witnessing their treatment involved both positive and negative experiences. Several patients said they had found it helpful to talk to others ‘in the same boat’. This man said that even though he would have preferred a room by himself, he experienced the company of other patients on the ward as supportive.

It was quite good being in the ward together [. . .] They were all angina sufferers so it wasn’t quite the same. I sort of leapfrogged them in the scales of who had what wrong, but they understood the pain and the fear of it and it was like suddenly being in a little club. So it was actually quite helpful. I didn’t really like it from the moment I walked in because I’d rather be on my own. But I think it was actually a very good thing because you could actually talk to people you’d never met before in your life about really personal things because they were all in the same boat. So it was actually very good.

HA11, male, MI in 1999 aged 42 years

Another man, who had to return to hospital for a bypass operation, described how the company and atmosphere on the ward helped to improve his experience of the surgery.

They transferred me into a side ward with three young lads in because they thought I would cheer them up. I think the reverse happened, but it was great. There was a 14-year-old with a lung problem who eventually had to get it cut out. There was another young lad with a concave chest, which they were going to take his ribs out and reverse them; a procedure they had never done at the hospital before and there was another chap who was quite an early age to be having bypasses. So we were mixed bag, we settled each other down and the nurses helped. The nurses were quite young, a lot of training nurses, which was surprising. But we were a good mix and we helped each other out and we helped each other to get over their fears, (a) before the surgery and (b) after.

HA12, male, MI in 2003 aged 65 years

Some patients said that comparing their own fate with that of others had helped them to put things in perspective. Seeing other patients make a good recovery gave them hope, but it could also be distressing to realise that fellow patients had died despite being cared for in hospital. Those who were in hospital for several days became aware of the staff behaviour that indicated that someone ‘hadn’t made it’.

But the one thing we, looking round the ward, all had, seemed to have in common is everybody looked most unlike heart problem people in that they all looked fit but to be there they had to be suffering from a heart problem. And I suppose the one very distressing thing was that you soon became aware that, not frequently but on a number of occasions during the time that I was there, people were being admitted and they didn’t make it and we had the all too familiar thing happen where all the curtains were drawn and you knew that somebody else hadn’t made it and they were on their way.

HA10, male, MI in 2003 aged 63 years

Those who are initially in intensive or high-dependency care may find that it is a difficult transition to the ward. The following quote illustrates the difference that a sympathetic nurse made to a patient who was finding it hard to deal with the noise on the ward.

Other people in intensive care had been so quiet and peaceful. Back into a ward, there’s people shouting and there’s a television on, and I, I was frightened, it was horrendous. I can’t explain it. I wasn’t frightened of having another heart attack. It, it was just this tremendous noise; people just shouting across to each other from one bed to another. Turning the television up, any noise at all, was, was horrific. It was, I guess I was seeking peace, peace and quiet. So any noise at all was, was magnified. It was, it wasn’t somebody talking, people to me seemed to be shouting and screaming and I didn’t need that. It was the last thing I wanted; I just purely sought peace and I wasn’t getting it. [. . .] And there was a very sympathetic sister on the ward who realised I was badly affected by the noise, and she moved me into a side ward for a couple of days and then from there into a much quieter ward than the original one.

HA30, male, MI in 1994 aged 53 years

Key questions

What are you going to do to me?

What are the possible outcomes? What are the alternatives?

What is my role in this?

Do I have a say? Can I do anything to help?

Key emotions

Uncertainty, worry, anxiety, trust and confidence in health professionals’ competence.

The data analysed in this report were collected in 2002–3. Since then, treatment options for MI have significantly developed, and nowadays many patients will experience minimally invasive procedures and very brief hospital stays. How patients experience these newer forms of treatment could not be explored on the basis of this set of interviews. However, other qualitative research in this area has suggested that while the ‘ “high-tech” procedure of primary angioplasty and fast recovery contributes to high levels of patient satisfaction’, ‘the feeling of being fixed and lack of belief at having had a heart attack may have implications for uptake of rehabilitation and lifestyle changes following hospital discharge’ (p. 85).¹⁰⁶ Patients may tend to see their condition as ‘acute’ rather than ‘chronic’ and their treatment as curative.¹⁰⁷

Involving patients in medical decision-making is now widely regarded as both ethical and beneficial. However, previous qualitative research suggests that health professionals and patients view patient involvement in treatment decisions in coronary care mostly in terms of information provision.^108,109

Many patients will experience feelings of anxiety before having surgical treatment. Health professionals can alleviate fear and uncertainty by keeping patients informed about what will be happening to them and the possible outcomes.

The unknown, the thought of having your chest sliced open, your ribs cut open and your ribs expanded, your heart being handled, being on a life support machine and there’s always a chance even with the best surgeons in the world that you may not come out of it. That really frightened me.

HA17, male, MI in 1980 and 1998 aged 49 years and 67 years, bypass surgery in 1988

When I went in [for the bypass operation] I was very, very apprehensive, I knew he had a 98% success rate and I kept saying to myself I’ve got to be one of the 98 not the 2. I’m a quite positive person really and you know I felt I’m going to be a 98 not a 2, but I was very apprehensive.

HA12, male, MI in 2003 aged 65 years

Health professionals should also consider the possible effects that a patient undergoing surgery may have on partners and other family members.

When I had the bypass, because I was down the theatre 10 ½ hours and [my husband] was expecting me to be back up in 3, he went through hell. He didn’t think I was going to come out of that theatre. And apparently, you know some of the patients’ relatives were saying to me, ‘I’ve never seen a man crying so much’. And every time they went out and said, ‘she’s still in there?’ he’d start crying. He said ‘there’s something wrong, there’s something wrong’. Because the surgeon had told him I’d be out in about 3 hours and when it was 10 ½ hours he . . . and I didn’t know nothing, obviously, I’m asleep. But he went through that. He’s gone through a lot.

HA03, female, MI in 1998 aged 53 years

Previous qualitative research has identified the main existential concerns in surgeon–patient interactions as surviving uncertainty, negotiating responsibility and trusting the doctor’s proficiency. It has also been suggested that when handling uncertainty, doctors are focused on imparting complex information about risk, while for patients, the manner of information provision may serve to establish doctors’ trustworthiness.¹¹⁰

Positive encounters with staff included those who had made an effort to answer questions fully and provide explanations at an appropriate level. Nurses were usually thought to have more time to talk to patients, and to be better communicators, than surgeons or cardiac consultants.

Rushed as they were, they [cardiac ward nurses] always had time to talk to you about what was going on. They would explain procedures to you. I think you have to ask in some cases, but once you have asked, or once I had asked, they were quite willing to go through and tell you. I think they want to be fairly convinced that you aren’t going to panic or misconstrue what they’re saying, so maybe they’ll be a little bit guarded at first. But generally I think that they’re there to help you get better and if they perceive that what you’re asking is because you want to know and it’s going to help you get better, they’ll give you the right answers.

HA23, male, MIs in 1991 and 1998 aged 49 years and 56 years

There are other barriers to the flow of information between patients and staff, as this woman suggests:

If you ask questions they answer you. If you don’t ask the question, obviously they’re not going to tell you because they don’t know that you want to know. I think probably they could say, ‘Is there anything that you want to know’. I mean they did, they did say that to me sometimes but I know some people are a bit befuddled or a bit in awe of doctors and frightened to ask or they don’t understand the technical terms or what have you.

HA32, female, MI in 2003 aged 53 years

A man voiced his dissatisfaction with the, in his view, disengaged and clipped exchanges he had had with senior clinicians.

What I find so unhelpful is the standard mode of communication with patients that now seems to be adopted by senior clinicians. This is characterised by an absolutely minimalist attitude to factual or explanatory statements that results in a delivery so uninformative and terse that it inhibits any possibility of dialogue. The contrast between consultant--speak and the frank and easy communications that you just take for granted with your GP is stark. [. . .] It’s always possible to find excuses: there’s always the pressure to meet number targets and the chronic shortage of time. It may even be that the high academic intellectual demands of modern hi-tech hardware oriented medicine militates against the selection of good communicators. I recall an elderly lady on the next treadmill to me at a gym session bending my ear unmercifully about some consultant she had taken against in a big way. I hadn’t a clue whom she was talking about until she said, ‘I wouldn’t mind so much if only he would occasionally look me in the eye when he is talking to me’.

HA04, male, MI in 2002 aged 62 years

Patients differed in their information preferences. A number were keen to know as much detail as possible and said that they had been assertive enough to ask the questions. Others were satisfied to have a rough idea of what would happen to them and felt happy to leave the details to medical staff. As the following man observed, providing information at the appropriate level of detail for an individual patient can be challenging for clinicians.

I then enquired as to how [the defibrillator] was fitted. The surgeon actually expressed some surprise that I was interested in the technicalities and he said, and I quite understand and believe what he said, because I’ve found out since a lot patients shut their minds to ‘how’ and ‘why’. It must be a very difficult job for either surgeon or nursing staff to find the right level to pitch the information at, because everybody’s different. In the cath labs where they actually do all these insertions, do all the fancy work with the electrician [laughs], it, I was fascinated to watch it all on the screen and yet there were people who were in the same ward as I was, it was a little four-bedded ward, who asked for their eyes covering because they didn’t want to know.

HA08, male, MI in 1989 aged 40 years

Another man emphasised the difference between the importance of being fully informed about the planned procedure and its attached risks and benefits, and not wanting to be bothered with the full technical details of the operation.

Well, in truth there wasn’t much of a decision to be made [about having the angioplasty]. I had complete confidence in the medical team and they had a clear course of action in mind. There weren’t any options on offer to agonise about. In those circumstances you’d be foolish to do other than go with the flow. Always provided you had fully understood what you had let yourself in for, and subject to the condition, in my fastidious, or just plain nervous case that I wished to be wholly unaware of work in progress. I have never understood this morbid obsession with watching on a display monitor while people poke around your insides. When I next came to I had been fitted with a stent in my left anterior descending artery and diagonal branch. I gather this was thought to be a pretty successful conclusion.

HA04, male, MI in 2002 aged 62 years

One woman acknowledged that it may be difficult to take in all relevant information about the treatments received at the time.

I think sometimes we don’t take things in. It would be useful to be given a sheet, I would like a sheet saying what has actually happened to me. I don’t know what bit of my heart is affected, other than they’ve said it’s the back bit. That’s all, that’s all I heard. They obviously said where in proper technical terms but I didn’t take that in and I would like to know so I think that would be useful for people who want to know.

HA32, female, MI in 2003 aged 53 years

Regardless of their personal information preferences, most patients emphasised that their main concern was the feeling that they could trust the medical staff looking after them and had confidence in their professional expertise and competence. Some patients enquired about the surgeon’s success rates or years of practice in performing a particular procedure. Interpersonal skills were also important in promoting a feeling of trust (see also Part 3: experience of the hospital environment).

One of the things that I wanted to know from the surgeon was how many of these things had he done. Was he, sort of, did he know what he was doing and he told me, this was September, he told me by that time he had done about 140 bypass operations that year. So that was you know, quite reassuring. And I also asked him what the prognosis was and he told me that 95% of all cases of, who have bypass surgery are successful, and 5% are not. So you’ve got a 1 in 20, is it? yes 1 in 20 chance that something might go wrong. And I said ‘what can go wrong?’. He said ‘mostly what can go wrong is that you get some kind of sepsis and we can fix that’. So I thought the odds were pretty good, bearing in mind that my cardiologist said I’ve got to have this done, not much choice.

HA09, male, MI in 1995 aged 69 years

While very few patients described instances of shared decision-making, the case of one elderly patient illustrates how upsetting it can be when patients’ own values and priorities are ignored in the course of deciding treatment options. This woman in her early eighties said that she had been judged to be too old to be operated on. She felt that the medical agenda of minimising risk conflicted with her best interests as a patient.

[I felt] devastated, devastated because they said, ‘oh yes, next week we will be taking you down to the theatre next week’ and when next week came they changed their minds because they brought another somebody else in who said, ‘Oh no, no, she’s too old’. And they said it in front of me, I’m too old and I felt so old, I felt ancient. Really, really I felt about 900 years old and I said, ‘well I don’t mind dying on the table, I won’t know anything about it’. But they said, ‘but we will and we don’t like to lose a patient’. But then I said, ‘you have a chance of saving one, too, haven’t you’. [. . .] I could quite understand they don’t want to lose a patient, it’s not good for them to lose a patient and if the chances are 50/50, I think they’d rather take their 50 on their side and have you die at home than on their table. That is fair enough, but then from the patient’s point of view, who hasn’t got much chance anyway, she would rather take the chance on the other side of the 50 and go ahead. Wouldn’t you?

HA15, female, MI in 2000 aged 81 years

This patient eventually found a consultant who was willing to perform the operation and made a good recovery.

Key questions

Why did I have a heart attack?

Will it happen again?

Can I still be the person I used to be?

Who or what will help me cope with what I feel?

Key emotions

Frustration, grief, loss of confidence, stigma and isolation.

In the days, weeks and months following a heart attack, patients and their families need to adjust to life with a chronic health condition. Besides lifestyle modifications and adoption of new routines such as taking regular medications, patients need to come to terms with the disruption the MI has caused to their sense of identity.

‘Loss of confidence’ was a phrase that was used by almost all patients in the sample when they were asked how the experience of MI had affected them emotionally. ‘Reassurance’ was what they said they most needed from health professionals. For some, the sense of vulnerability and threat was so severe that it led them to abandon activities they had previously enjoyed, leading into a negative spiral of avoidance and depression.

At the moment I don’t feel I ever will be confident enough again. And I, we were going to go on holiday with my sister to Portugal, because last year we went and we had a lovely time and we said we’d go again this year. I won’t fly. I don’t want to go which was a little bit upsetting for my sister. We had a few words because she didn’t understand how I felt. I don’t suppose she ever will understand how I felt, but there is no way I am leaving the country. And there’s no way I’m leaving Wales. It takes me all my time to go to [the local town] because if anything happens to me, I want to go to the hospital, the [local hospital] in [a nearby town].

HA01, female, MI 2003 aged 63 years

Patients who considered themselves in good health and had led an active lifestyle before their MI may feel that they have not only experienced a life-threatening event but have also lost an important part of their previous identity. A loss of confidence in the body can make people afraid to do any kind of exercise – even though most of them were well aware about the importance of physical activity for secondary prevention (see also Part 7: regaining body confidence: patients’ experiences of physical rehabilitation).

A heart attack hits you emotionally as well, that’s what I found. I couldn’t believe it that you know that I’d done all that I could do to be fit, have the right diet, I don’t smoke, I’m not overweight. I just, you know, I just couldn’t believe and if I could have a heart attack, well lots of people said that to me, if you can have a heart attack anybody can. So that made me feel very humble.

HA14, male, MI in 2003 aged 51 years

Patients spoke of a continued sense of stigma surrounding MI and several patients said that they had been selective about who they had told. Those who had made use of peer support and community-based rehabilitation groups spoke very positively about the value of talking to others with similar experiences. However, some patients do not have easy access to this form of support. While some people may benefit from encouragement to use such resources, it is important to recognise that others do not want to meet other people who have had a MI; they may prefer the relative anonymity of websites or telephone helplines. Health professionals should, therefore, give patients addresses for online support groups as well as any locally available resources (see also Part 9: building a supportive environment: myocardial infarction patients’ ongoing support needs).

People in the interviews often said that their partner had been a vital source of emotional support for them in the weeks and months following their heart attack. However, the experience of MI could affect the relationship and bring about a renegotiation of roles within the marriage. This could sometimes be a difficult process.

I suppose having been the breadwinner. I’m from a generation that I never wanted my wife to go out to work. Maybe we were fortunate that we were in such a position that she didn’t have to. And following my initial heart attack, and certainly following my enforced medical retirement some thirteen years ago, I found it difficult, very difficult to come to terms with that and were my wife present, she would tell you that I made life quite difficult for her at that period. Partly related to the job that I had, I was used to being in a position of authority and I found it quite difficult to find a reason for being.

HA08, MI in 1989 aged 40 years

Male patients, in particular, said that they had found it difficult to pass on some of their previous responsibilities, such as driving, to their spouse. A few men who had to take early retirement on medical grounds said that they felt useless and emasculated following their MI. Findings from previous qualitative research confirm that men are at risk of experiencing a crisis of masculinity after MI.¹¹¹ For women, on the other hand, it might be difficult to step back from previous domestic tasks and demand additional support from family members.

Some patients also acknowledged that they themselves had become more difficult to be with and a few said that they had become much more short-tempered, possibly as a result of medication side effects.

Well, you know you see the bad side of the thing, you’ve had a heart attack, how bad has it been, what’s the damage, are you going to have another one. If I do this I may have one. I mustn’t do this, I mustn’t do that. In a way it made life a bit hard for my wife. I realised that fully and the treatment I’m on, these various tablets, they do make you a little bit short tempered, I’m understand. And I snap at her sometimes when I shouldn’t. But that may be one of the side effects of it.

HA06, male MI in 1996 aged 70 years

My wife got the, the brunt of my sort of emotional state and it’s something that the consultant had said that you know, I’d have ups and downs and that I might get tearful and if you think you want a good cry to, you know, just let it happen but it will pass. But everybody else was saying how marvellous I was doing and patting me on the back for handling this terrible thing so well. And I mean my wife was getting recognition for the support she’d given me as well but it was, I think it wasn’t fair that everybody was saying how fantastic I was handling it when my wife was getting the dark side.

HA09, male, MI in 1995 aged 69 years

I’m very, very glad that we had such, and still have such a strong marriage [um] because the black moods, the despair and very much out of character after the triple bypass initially had me breaking down and crying for no apparent reason. I could have been talking much as I am now, to either my wife or a friend or a colleague, and I would start to cry and to this day I couldn’t tell anybody why. I then got quite black moods, a case of ‘Why me?’, ‘Why is it happening to me?’ ‘What have I done, what have I done to deserve it?’ All the usual sayings and I think because it’s the nearest and dearest, the only person that’s with you at that time, you take out of them some of your own anguish, some of your own anger.

HA08, MI in 1989 aged 40 years

Health professionals can play a positive role in mitigating the impact of MI on couples’ relationships by helping to prepare patients and their partners for the strains that might occur. Hearing accounts from other patients and partners may also help to understand points of conflict and develop strategies for dealing with marital tensions.

Some patients in the study did not feel able to openly talk about their concerns with their partner because they did not want to worry them.

I don’t think I can fully talk to my wife sometimes about my concerns because [sigh] I think she overly worries about it. On some things she, she gets then frightened and worried about it, and then I only then get upset for her, which doesn’t help me. So the point of trying to share it with somebody helping me, it just defeats, all I’m doing is telling her something that upsets her and I’m thinking where was the benefit in that, that, that’s not to say if there’s something we need to worry about and do something about, that I certainly shouldn’t be hiding something like that from her. But some of the concerns that you might just want to chat to somebody or you know, get off your chest, I wouldn’t do it with my wife now because of having seeing her react.

HA05, male, MI in 2003 aged 37 years

Having a named health professional who is easily accessible (perhaps via e-mail or a telephone messaging service) to provide reassurance on non-urgent concerns was greatly appreciated by patients. Several said that they had benefited from a trusting and supportive relationship with their cardiac nurse.

Partners are likely to worry about the occurrence of a repeat attack, sometimes more than patients themselves, and they might also experience feelings of powerlessness and frustration. Initially after returning home, some patients said that they had felt ‘mollycoddled’ by an overprotective spouse.

She wouldn’t let me out of her sight, that was the main thing. She would have followed me to the toilet if she could. She wouldn’t let me go – there’s a shop 300 yards away from here where I go and buy a paper. Wouldn’t let me go and do that. She was very protective, it worried her a lot, more than I think it did me and I think that is the impact on people.

HA12, male, MI in 2003 aged 65 years

Many patients said they had found it very helpful when a consultant or nurse had talked to their partner to reassure them on the kinds of activities that were safe for patients to engage in during the period of recovery. Involving spouses in rehabilitation could also provide much-needed reassurance.

We found that a lot of the stress after the operation derived from the fact that she was more, more worried about, about what I could do than I was. And she was trying to hold me back all the time whereas I was always trying to go. And one of the benefits of joining the support group is precisely this, that the spouse has a chance to speak to other spouses and see you know, what you can do and what you can’t do and that takes away a lot of the stress of rehabilitation. [. . .] [Also] Dr X was very instrumental in helping me there. He said to my wife, ‘Look he’s got a body and his body’s going to tell him what he can do and what he can’t do’. And my wife took that on board and it was far easier and then from then on we made jokes about it.

HA09, male MI in 1995 aged 69 years

Previous qualitative research has particularly highlighted a need for guidance for both partners on sexual activity.^112–116 One man said that his wife had been more concerned than he was about restarting sexual relations after his heart attack, but openly talking about her worries had helped them to get past it.

Resuming your sex life after a heart attack, it’s quite difficult. It wasn’t so much difficult for me as for my wife actually. She was very concerned that I was going to throw another wobbler when . . . [. . .] What helped was talking. You have to, you have to always, you can tell when things are not quite right, ‘So what is the problem?’ ‘Oh I’m a bit concerned, I don’t want you to hurt yourself, I don’t want you to.’ ‘Okay I’m not going to hurt myself, I’m aware of what I’m doing. If I hurt, you’ll know.’

HA18, male, MI in 1995 aged 47 years

Alongside information about the safety of sexual intercourse, patients may also require emotional support if their body image and sexual confidence have been negatively affected by surgical scars.

Because of the scar on, I didn’t want anybody to look at me, even my legs, you know with the scar all up my leg. I didn’t want anybody, I’d wear trousers all the while. And I didn’t want anybody to see the scar down my chest. It sort of, it’s you know, it was horrible, it was. And I didn’t feel, and I just didn’t feel sexual at all. I just didn’t want to know anything like that.

HA03, female, MI in 1998 aged 53 years.

People also sometimes find positive ways of coping with the emotional impact of MI; for several study participants, the experience of MI had sometimes been a turning point from which to reassess their priorities and make positive changes. Several had become actively engaged in cardiac rehabilitation or peer support groups or embarked on new projects that gave them hope and enjoyment (see also Part 6: building a supportive environment: myocardial infarction patients’ ongoing support needs).

However, some patients may need more intensive psychological support to help them come to terms with their heart attack and to find positive ways forward. The extended extracts below illustrate two cases of patients who experienced prolonged periods of severe depression after their MI before they found help.

Case study 1

One younger woman (HA33, MI in 2003 aged 36 years) developed panic attacks in the aftermath of her MI. After returning home from hospital, she at times felt too anxious to stay at home by herself. She was lucky to have a supportive family and was able to stay with her mother for stretches at a time.

Well I had visitors, everybody sort of kept an eye on me without trying to be too obvious. I did have bouts of anxiety and I would go and stay with my mum. My son would take me over there and I’d stay for a few days and then I’d come back when I felt better. And apparently, this happens quite a lot with people who are reasonably young having a heart attack, you get these anxiety attacks, which again is this wave of feeling which is similar to the heart attack but, but not quite the same. And I would get it for no apparent reason; it was obvious that my brain was doing something that I wasn’t really aware of. Then I would feel dreadful and I couldn’t, I didn’t want to be on my own, so my mum would look after me for a few days and that was nice.

Her depression continued for several months and led her to withdraw from people around her.

I was very, very low and I mean very, very low. Tearful, [um] depressed, depressed is the only word I can describe, really, really depressed. And [um] I didn’t want to go out the door. I didn’t want to go out the door, I didn’t want to do anything. Even after having that done, I still was so depressed and down and I didn’t want to do anything.

She described how she was eventually helped by the dedicated one-to-one support from a cardiac nurse, emphasising that this level of support would not have been possible in a group situation.

It was only [um] [the cardiac nurses] support that got me through it [. . .] Well, I think with [the cardiac nurse] it was her, it was the one-to-one basis, it’s not, it’s not being done in a class and then you can get to speak to somebody and she can, you know, find out more about you and find out why, you know, you’ve had a heart attack and why you’re still feeling down. And so she spent the time with me to get to know why I’d had my heart attack, why I felt so down, so she had something to work on then. And so she just helped me, you know, learn to relax because after you’ve had a heart attack the last thing you want to do is relax. You know, you’re scared to go to sleep in case you don’t wake up again so, you know, she just reassured, she gave me a lot of reassurance and a lot of help, a hell of a lot of help. [. . .] I’m a lot better now, obviously than what I was but I’m still getting there. I, I’ve still got to keep up the relaxation and stress management.

Case study 2

A man (HA30, MI in 1994 aged 53 years) who had previously enjoyed a very active lifestyle developed unstable angina after his heart attack and described how he became very depressed as a result of the constant feeling of physical vulnerability.

I eventually did come out of hospital after I was there for a fortnight. But when I got home, nothing was the same. I wasn’t the same. [Pause 4 seconds] There were days I would quite happily have died. I’d made up my mind, that if I had another heart attack, I wasn’t going to be the one to send for an ambulance because I did not like what was happening to me; it was just so horrific, so depressing, miserable, it was just no way to live. And this of course was only a month after I’d had the original heart attack.

He subsequently developed panic attacks and sank into a deep depression which affected his family life and left him feeling suicidal.

Angina started over the most silly thing. I could watch a programme on television, feel a bit sentimental about something in the programme and I’d get angina. I’d often have to walk out the room. That became [pause 3 seconds] the, the biggest thing in my life this depression, this fear, constant thoughts of suicide, that everything physical seemed to just, didn’t matter. It didn’t matter that I was out of breath when I got to the top of the stairs. Taking tablets, which I hate, to this day I hate, I went through this period where it didn’t matter. I’m supposed to take the tablets so I take the tablets. [. . .] Any confidence I’d had before just drained away. I, from that moment on, I became a failure. I did everybody down, I’d never be good enough to do anything worthwhile again. It was all psychological [um] but it was overwhelming, and from that day I have never been the same. It was quite, quite horrendous.

The turning point came when he asked his GP to sign him off work and he was referred for counselling.

So I ended, had to go to the doctors and say, ‘I’m just not coping’ and they signed me off again and fortunately sent me for counselling. That in itself was another blow to my confidence, the fact that I, of all people, would have to go through counselling. But there was an extremely patient lady, who I was seeing. She was concerned enough that she, she saw me every week, once a week. [. . .] So thrashed all this out and gradually having somebody to talk to in that way did help and I’d recommend to anybody, if they’re offered the chance of counselling, to go for it. Just get it, everything off your mind, get it off your chest as they say, [um] and it did help me.

After the counselling had come to an end, he asked to be referred back to rehabilitation classes. There he managed build a trusting relationship with one of the rehabilitation nurses who suggested that he try Reiki. He was very sceptical initially but now feels this has taught him the essential skill of relaxation and he manages much better than previously.

It was so absolutely wonderful, so refreshing, so relaxing that, yes, I can switch off. I can [pause 3 seconds] sit and watch television, and think of [the nurse], and I don’t go into a trance, but I – everything just washes away. Nothing bothers me, I’m completely at ease with myself. I’m still not the happiest person, I know I’ve got problems, but I can make them go purely because what I learnt during Reiki. And to be able to just switch off, I’m 63; I’ve never been able to do that in my life.

Further references for qualitative research on this topic

Texts on qualitative research are recommended.^117–119

Key emotions

Emasculation and vulnerability.

Worry and uncertainty.

Ambivalence towards exercise.

Empowerment and confidence.

Key questions

Will my body fail me again?

How much physical activity is safe for me to do?

How much exercise is beneficial?

How can I fit exercise into my life?

Insights from previous qualitative research

Previous research on cardiac patients’ engagement in rehabilitation schemes has reported great variation in the type of programmes offered to patients across different NHS localities as well as considerable variation in take-up rates.¹²⁰ It has also been suggested that existing schemes do not sufficiently address the needs of particular groups of MI patients who are known to be under-represented among the attendees of cardiac rehab programmes, such as women, people with ethnic minority backgrounds and older people.¹²¹

Several qualitative studies have explored patients’ reasons for and against attending exercise classes and possible structural and personal barriers to accessing such programmes.^122–124 For example, O’Driscoll et al.¹²⁴ identified lack of professional training, role confusion among rehab staff and weak communication between secondary and primary care as service-related barriers to successful engagement. They found that staff struggled to prescribe accurate training intensities, had insufficient space/resources to invite partners along and did not transfer information from hospital stress tests, meaning that they were unable to tailor exercise to patients’ individual needs.

Cumulative insights from qualitative work on patients’ experiences of cardiac rehabilitation suggest that non-attendance and attrition from formal programmes are rarely rooted in patients’ lack of knowledge about the importance of exercise and adoption of a healthy lifestyle. Non-engagement should, therefore, not be dismissed as ‘non-compliance’, but is more fruitfully understood as well-reasoned decisions based on patients’ – not necessarily accurate – beliefs and perceptions which can be amenable to intervention¹²² or as the preliminary result of decisional ambivalence.¹²⁵ Instead, patients’ sense of self-efficacy, embarrassment about public exercise and perceptions about other attendees as well as the health professionals involved in delivery have been identified as some of the factors that influence patients’ decision-making about whether or not to attend cardiac rehabilitation schemes.^122,123 Qualitative studies have also shown that patients’ perceptions are subject to change over time^123,126 and therefore greater flexibility in the ways rehab schemes are delivered may help to increase their reach. For example, Jackson et al.¹²³ argue that offering places on rehab schemes for a narrow time window only is likely to result in missed opportunities for those patients who initially may dismiss the need for this type of support but may change their minds when they find that their recovery does not progress as well as they had hoped.

Fears that physical activity will bring on repeat myocardial infarction

All participants in the study were conscious of the importance of regular exercise as a key aspect of secondary prevention. However, many of them said they felt unsure about how much physical activity was safe for them to engage in, and also, how intense and prolonged exercise would need to be to achieve a beneficial effect for their cardiovascular health.

People described their fear of having a repeat attack if they ‘overdid it’ when exercising. The experience of MI could fundamentally alter their relationship with their body: it was no longer trusted to function routinely, but was anxiously monitored for possible signs that another cardiac event was about to happen. This woman’s account illustrates the vicious cycle of fear of repeat attack, avoidance of rewarding physical activities and low mood.

I’m terrified [to go exercising by myself]. I wake up in the morning and I think right now today I will go for a swim. Right, I get my bathing costume, towel, bag, right who can I phone to come with me. So then I phone my sister’s husband, no he can’t come. Right, there’s nobody else I can phone, so I think ‘Well I won’t go, I’ll go tomorrow’. And then for the rest of the day I feel guilty because I haven’t been but I can’t go because I’m scared. What if anything happens to me in the baths. Who’s gonna be there. Whose gonna take me home. You know, if I’m going to die I want to die at home in my bed. I don’t want to go to a hospital and I don’t want to have an operation. So if I’m gonna have this heart attack I’m gonna die at home in my bed, so I’m not going out am I?

HA01, female, MI 2003 aged 63 years

Participants’ experience of formal rehabilitation programmes

The accounts of participants in this study describe a great deal of variation in terms of duration, organisation and content of the types of programmes they were offered. This is likely to reflect both the geographical and temporal range of their experiences (remote, rural, small town and urban settings, and 1989–2003, respectively). In reading the findings presented here, it should be borne in mind that participants were sampled at different stages of the rehabilitation process, allowing some of them to report on recent rehab experiences while others could offer more of a bird’s-eye view of how their experience of exercise classes had shaped their personal engagement in rehabilitation in the longer term.

Figure 13 provides an overview of the types of programmes participants in this study were offered and engaged in. Figure 14 adds information (where available) about whether or not participants continued to engage in regular exercise after completing the initial programme.

FIGURE 13

Patients’ participation in cardiac rehabilitation programmes. Number in shape: participant interview ID number. Participant sex is indicated by shape fill colour (blue = male; green = female). Participant age at (more...)

FIGURE 14

Patients’ participation in hospital-based rehabilitation classes. Number in shape: participant interview ID number. Participant sex is indicated by shape fill colour (blue = male; green = female). Participant age at diagnosis is indicated by shape (more...)

Finding out about rehab schemes and waiting for a place

The majority of participants in this study were offered hospital-based rehabilitation classes in the form of twice- to thrice-weekly classes, running for 4–12 weeks, which combined supervised exercise with education and advice about healthy lifestyle. Most patients said they had been told about hospital-based rehab classes through their cardiac nurse, either just before or just after discharge from hospital. However, several participants said they had to wait for several weeks, and in some cases, months, before the start of the scheme. This could be a very anxious time for patients. This woman described her uncertainty and worry regarding the physical sensations she experienced.

I was frightened to come home. I didn’t want to stop in hospital but I didn’t want to come home. I thought, ‘well my husband’s got to go work, I’m going to be on my own’ and it’s really frightening, that time. From, I think it’s about 8 weeks, that 8 weeks from coming out of hospital to going to the rehabilitation, it’s really frightening because you’re sitting on your own and you have these twinges and you have pain in your chest, you know all these things are happening and I think all it is, is fear. When you’re frightened you tense up, and I think that’s what brings the pain on.

HA03, female, MI in 1998 aged 53 years

A couple of participants said that the offer of a hospital-based rehab place came so late that by then they had already recovered to an extent where they did not think they could gain any more from the programme. One younger man who, unlike many others in the study, felt confident about exercising, but who thought the rehab classes could have helped with his emotional adjustment, regretted that no class was available in the first few weeks after his discharge from hospital.

The fact was that the meetings were so infrequent that, you know, I’d almost fully recovered by then, by the time the aftercare started. But no, had it been in the first few weeks afterwards just possibly I may have got out of my system what caused me to be so horrible to [my wife], I don’t know but may be that would’ve helped.

HA11, male, MI in 1999 aged 42 years

Another man said it was helpful to have been given the Heart Manual with instructions about safe exercise and general lifestyle advice to bridge the time between discharge and the start of the formal programme. He used it like a diary to record his activities and monitor his progress. (HA16, male, MI in 1999 aged 49 years)

These accounts indicate the need to ensure that patients do not feel ‘left hanging’ in the period between discharge from hospital and the start of rehabilitation schemes and to provide them with points of contact and supporting information that can provide guidance on safe physical activities and reassurance in the early stages of recovery.

Patients’ reasons for non-attendance of group-based programmes

Enabling patients to make physical activity a routine part of life

The majority of participants in this study continued to engage in regular exercise months and even years after their MI and after their initial rehabilitation scheme had come to an end. Those who exercised regularly seemed to share a belief that they had an active role to play in preventing a repeat heart attack and described themselves as empowered by this belief. Many felt that joining a group of people ‘in the same boat’ had been helpful in maintaining the motivation to be regularly physically active, whether this was in the form of a community-based exercise group or as part of the activities organised by peer support groups such as dances or walks.

For most of those who attended hospital-based exercise classes, they represented a crucial gateway to further information and support. Most of those who attended community-based exercise schemes after the end of phase 1 rehab had found out about their existence at the hospital-based classes. In a few cases, participants described how the hospital-based group had become a springboard for the setting up of ongoing community-based exercise classes, brought about by the joined initiative of group attendees and committed cardiac rehab staff.

I go to a group, which was set up from the hospital actually, a group of patients that did the exercises because the hospital runs an exercise class for heart patients and we’ve all attended this class and we all wanted to continue. So about five years ago, this group was set up and it’s exercises especially for pumping your heart. They’ve managed to get all sorts of equipment together. They’ve got a defibrillator, in case anybody has problems during the class, so you feel quite safe going to it, in the knowledge that somebody can revive you if something happens [laughs], but I don’t think anything ever has and we just have a good time. That’s, that’s twice a week. I can only go once a week but they do do the class twice a week and it’s good because everybody is glad to be alive and they’re all cheerful and making the most of it.

HA32, female, MI in 2003 aged 53 years

While a small qualitative study cannot establish whether or not those who attend rehab schemes are more likely to continue exercise in the longer term, the accounts of participants in this study highlight the important role that such schemes had played in helping them to make exercise part of their everyday life post MI. Many patients talked about how having a heart attack had caused them to reassess their priorities and make changes to their lifestyle, including new projects and new kinds of leisure activities. Making such far-reaching changes is likely to be easier for patients who have access to local facilities that they can afford and are no longer in full-time employment or with caring responsibilities.

The experiences recounted in this section also highlight some of the possible barriers to engagement in cardiac rehabilitation programmes and some of the challenges faced by those who continue in employment, who live in remote areas with poor public transport or who feel out of place in a group environment due to their age or gender, their approach to dealing with health issues or other personal qualities.

Finally, it should be noted that several participants in this study managed to set up good exercise routines on their own initiative, and all of those who were asked about the Heart Manual said that they had found it helpful, as either a substitute or a complement to group-based rehab.

Cardiac rehab was the best thing that could have happened. You do, you start off very gently, exercise, very gently, very easily and at the end of each session, someone will come and talk to you, the nurses will talk to you, absolutely brilliant. By the end of 6 weeks, I can do anything and it’s continued from there.

HA18, male, MI in 1995 aged 47 years

Key emotions

Helplessness/self-efficacy.

Trust and doubt.

Uncertainty about cause and effect.

Key questions

What can I do to help myself? And will it make a real difference?

What kind of life can I hope for after MI?

Who and what can help me in making changes?

Myocardial infarction as a juncture and turning point in patients’ lives

Patients who have experienced MI typically talk about it as a decisive juncture in their lives (see also Part 2: receiving the diagnosis and Part 6: the emotional impact of myocardial infarction for patients and their families). Many participants in this study used phrases such as ‘it was a wake-up call’ to describe how the realisation that they could have died during the attack had led them to reassess their priorities and make changes to their lifestyle.

A couple of recent studies have suggested that less invasive treatments, shorter hospital stays and quicker recovery rates may lead patients to perceive MI as an acute rather than a chronic health problem and consequently lessen the psychological impact of it as a life-changing experience.^106,107

Understanding the level of seriousness patients attribute to their MI and to what extent they perceive themselves as being able to make a difference to their future health are important preconditions for engaging patients in behaviour change for secondary prevention.

Numerous studies have demonstrated that education – informing patients about the importance of adopting particular health behaviours – is only one piece in the puzzle of affecting behaviour change. Qualitative research has illustrated the complex interactions between patients’ health beliefs, their motivation to change behaviour, their social context and level of support, and how all of these variables may change and develop over time. For example, Wiles¹²⁷ found that patients’ beliefs about the extent to which they could make a difference to their personal risk were linked to their motivation to adopt health-promoting behaviours, but also that patients’ motivation tended to dwindle with the progress of time, especially if they felt that they were not reaping the benefits that health professionals had led them to expect as a result of their modified behaviours.

This chapter starts by mapping out some of the areas of lifestyle change after MI that are likely to be relevant to patients and that health professionals might want to consider when trying to engage patients in secondary prevention. It then focuses on adherence to medication as a lifestyle change that may appear relatively straightforward from the perspective of health professionals (‘just make sure you take your pills’) but which many participants in this study experienced as a significant burden with far-reaching implications for other areas of their life.

Individual receptiveness for health promotion messages

Most participants in this study described high levels of motivation and adherence to medical advice during the early period following their MI; they felt responsible for their future health, and described the belief that they could actively do something to reduce their risk of a repeat attack as empowering. This man described how his adherence to medical advice and search for information were driven by his desire to ‘fight back’.

I think especially in the first year because you really are doing absolutely everything you’re told to, everything the consultant said to do and more. Everything you’ve read because it’s your way of fighting back. And you pick up every leaflet about heart attacks and look up things on the Internet about angiograms and stents and, but that’s like empowerment, it means that you know this heart attack struck you down but now you’re going to do something about stopping having another one.

HA11, male, MI in 1999 aged 42 years

However, patients who struggle to accept the diagnosis and have a strong sense that they ‘did not deserve this’ may need support to help them adjust emotionally before they can contemplate behaviour changes aimed at secondary prevention. This man took little notice of health promotion messages after experiencing his first MI in his forties, because he found it impossible to reconcile his self-image with being an MI patient.

Because I was quite young, [the MI had] very little [impact on me]. I still hadn’t got over the – if you like, I know I was 40 but as a younger man, as with most younger people, you consider yourself immortal, you’re not ever going to die, nothing can hurt you. I suppose there was still an element of that in my behaviour. In fact you tend, I tended to go the other way, that ‘don’t be silly, I can’t have had a heart attack, I’m going to prove them wrong’. Hence you carry on smoking, hence you don’t reduce your workload and you, you tend effectively to continue, once you get over the initial trauma, you tend to continue your lifestyle exactly as it was.

HA08, male, MI in 1989 when aged 40 years

Return to work or (early) retirement?

The majority of participants in this study were retired from work at the time of interview, but the study included some who had returned to work weeks or sometimes months after their MI. A few had decided to take early retirement following their MI and a couple of others had initially returned to work but found that it had proved too strenuous for them to carry on. It seems important to consider patients’ work status and their feelings about work and retirement when discussing secondary prevention. Several patients said that they felt stress in their job had contributed to their MI. Those who continued in employment sometimes felt reliant on their employers’ good will to allow them a staggered return to their previous workload or time off to attend cardiac rehab schemes.

This woman was grateful that her employer allowed her to return to her job in a gradual fashion.

[My employer was] shocked but very supportive. But they were really, deeply shocked because I’d worked hard for my company for like a good 5 years I’d been there so I’d worked hard. I knew what I was doing and I knew my job and I worked, I did my job well so when I sort of like left to have a heart attack they had to get like somebody else to replace me but they didn’t replace me with one, they had to replace me with two. So that’s how hard I’d worked for them. But they were very supportive to me and they put me on like full pay for all the time that I was off. And obviously, they just wished me well and didn’t want me to go back until I was ready and now they’ve changed my hours so I only work part-time hours at the moment. And you know, I’m slowly building myself back up to do more hours, you know, as time goes by. So at the moment I only do 21 hours a week but I’m slowly building that back up so they’ve been, they’ve been absolutely great. And they’ve sort of like worked my hours around like my hospital appointments and my rehab classes so I must say that they have been brilliant.

HA33, female, MI in 2003 aged 36 years

Several patients of working age said they were concerned about being perceived as ‘disabled’ following their MI and how this might affect their longer-term prospects. Especially younger people of working age and/or with caring responsibilities may struggle to adjust their activity schedules in a way that allows routine integration of health-promoting behaviours. Conversely, suddenly having ‘too much time on your hands’ after MI might also be experienced as difficult and depressing (see also Part 6: the emotional impact of myocardial infarction for patients and their families). One woman talked about her difficulties adjusting to a less busy schedule and finding a new purpose as secretary of a support group after taking early retirement from work following her MI.

When I came out of hospital, I couldn’t settle. I took up cross-stitch, that was a waste of time. I took up making aromatherapy stuff, I was doing all these potions, that was a waste of time. I just couldn’t, I couldn’t settle and I needed to do something because you’ve been busy all your life and you’ve always been active and all of a sudden you’re not doing anything. And I was taking on all these different, and then I says, ‘I think I’ll buy a computer’ and my husband says, ‘look you’ve been buying all these other things which are cheap,’ he said, ‘but a computer is expensive just for a couple of weeks’. I says, ‘no, I want a computer’. So he bought me a computer and I love it, I’ve been using it now for about 4 years and I love it. I am now the secretary of the support group and I do the newsletter and I, you know do all these things. I keep myself quite busy doing things on the computer. I’m quite proud of myself.

HA03, female, MI in 2000 aged 53 years

Many participants in this study had used their experience of MI as an opportunity to reassess their previous lifestyle, had considered the things most important to them and embarked on new projects as a result. This meant that for them, making lifestyle changes such as the adoption of a healthier diet, learning relaxation techniques and engaging in regular physical activity were embedded in a more far-reaching reorientation of their everyday lives. These participants experienced making lifestyle changes for the most part quite positively, as self-directed efforts towards reaching outcomes that they saw as both personally achievable and worthwhile. They were enabled to do so by having good financial, family and peer support, often in the form of ongoing engagement in support groups and regular follow-up care (see also Part 9: building a supportive environment: myocardial infarction patients’ ongoing support needs).

This man initially felt very angry at his forced retirement, but he retrained as a cardiac rehab instructor and successfully managed to build a whole new career with support from his wife and perceptive health professionals who recognised his potential.

I would never have thought that I had the inclination to do some of the things that I do [now]. I was quite angry at first that I’d had to give up [work]. It was a decision that was made for me and I really was quite upset that I had to stop before what I thought was the time I should. I really felt I’d got more to give and I could do more. [. . .] After I was retired, and after a few months of just walking around, doing jobs in the house, getting fed up, I heard about a course of training you can do to get qualified in what they call ‘GP exercise referral’. So I took the course and passed it and when I got back, I was put in touch with the local primary care trust, who asked me to write a scheme for a rural exercise programme, which I did in conjunction with the local surgery and we decided to put on an exercise scheme for people who’ve had heart attacks, bypasses and so on, some years ago who had stabilised and this would be a form of secondary prevention. So I started that nearly three years ago and patients are referred from the surgery. It’s grown quite considerably over that time; we have about fifty patients who come to the classes. I do three sessions a week. Now that my wife’s retired, she comes down and helps as well.

HA23, male, MI in 1998 aged 49 years

Patients’ information and support needs around medication

Qualitative research on the reasons why patients might choose to discontinue prescribed medication has identified adverse effects that are painful and/or interfere with daily life as the most common reason. Other reasons include confusion about why a treatment has been prescribed or of how best to take it, the cost of medication, mistrust in medicines or the health-care system more generally and preferences for alternative therapies.¹²⁸ If patients’ information and support needs around taking medication are addressed they may promote better adherence to prescribed treatment regimens.

Acceptance of the burden of medication as the price for improved cardiovascular health

Many participants in this study had experienced adverse effects from the medications they were prescribed at some point after their discharge from hospital. For some, having to put up with the unpleasant side effects had become an accepted part of their life after MI – the lesser of two evils.

I also experience a number of minor reactions; my digestion is upset most of the time to the point of threatening to become inconvenient – I have a small supply of anti-diarrhoea pills just in case but have not yet had to use them; for a good part of the day my fingers are white and cold due to a restricted blood supply but other parts are quite the reverse. Unfortunately this is principally my nose, which lights up like I’m a bottle-a-day man. Apart from the coughing it’s all minor stuff that doesn’t interfere with my life. It’s a small price to pay and I’m not complaining.

HA04, male, MI in 2002 aged 62 years

I’ll have to take [these tablets] for the rest of me life which I’m quite happy to. You know if you came along now and said ‘look, here’s a pill that will guarantee if you take this pill every day you won’t have a heart attack,’ I’d take it. I’d take two. But, there we are. And I know that they don’t guarantee you don’t have one, they’re just helping my blood pressure and my cholesterol.

HA01, female, MI in 2003 aged 63 years

Understanding what medication does and why it is necessary

Most participants in this study had to take 3–5 different pills or sprays several times a day following their MI. Integrating the taking of medication into their daily routines was often achieved with the help of aide memoirs and/or the support of a spouse.

I have a lot of medication, blood pressure and a number of things which fortunately don’t seem to result in any side effects which is a big plus and [my wife], she sees it as her function in life to make sure that I take it. And I do naturally take it in the morning, I take some in the morning as part of my usual routine, shaving and, yes I do shave, and cleaning teeth and so on, and in the evening when we have supper, except then I sometimes forget, but she doesn’t [laughs].

HA09, male, MI in 1995 aged 69 years

Many participants said that they did not like taking their medication, but that they recognised the importance of adhering to the prescribed regimen to keep healthy. However, over time there was a risk that the initial motivation might fade and doubts take hold whether or not the prescribed regimen continued to be truly effective.

I’m fairly organised and methodical and so they [pills] sit on the breakfast table and I always remember them in the morning. We’ve only missed them once in the evening; we’d been out for the evening and we just, well we felt tired and we just went straight to bed. Apart from that I’ve been taking them faithfully. But I said to my wife the other day, I can understand people who would get fed up with taking the pills on a long term basis because this is . . . well 9 months now that I’ve been taking these pills; five a day and you do get fed up with it and you think ‘oh what are they doing?’, you know. ‘Is it doing me any good?’

HA14, male, MI in 2003 aged 51 years

A few patients talked about how they had appreciated being thoroughly briefed at discharge, both verbally and in writing, about the kinds of medicine they needed to take, what each medicine was supposed to do and why this was important. However, there were also several participants whose information needs had not been fully met and who worried about whether or not the combination of medicines they had been prescribed were appropriate for their particular situation. Patients who studied the leaflets supplied with prescription medicines were at times left with more questions than answers, and even those who had an opportunity to raise their concern with a health professional did not always manage to receive answers that they felt were sufficiently in-depth and reassuring.

But this Atenolol is supposed to, I said ‘What’s this for?’ I asked them what it was for and they said ‘It’s to slow your heart rate down’. I said ‘But I’ve got a slow heart rate,’ and you know, I don’t know anything about the medicine and I’m just doing what they tell me.

HA13, male, MI in 2002 aged 70 years

A few participants who felt unsure about why they had been prescribed a particular drug, or whether or not the drug actually showed any beneficial effects, talked about feeling less committed to taking it. This woman was unconvinced about the need for an additional drug that she was concerned might negatively affect her blood pressure.

I’m taking all the heart pills as I said, I don’t know about this Reduxal because it puts your blood pressure up, doesn’t it, but I told her [GP] this, I’ve talked to her about it and she said it’s fine. But it, I can’t see the point of taking it to be honest. I mean I have told her this and she said ‘Well just try it for 3 months,’ which I am doing. But I’ve got a packet there and I haven’t touched them yet so when I go back to see her on the 22nd I’m going to say to her, you know.

HA01, female, MI in 2003 aged 63 years

Symptom or side effect?

Some participants said they found it difficult to know whether to attribute the symptoms they experienced to problems with a particular type of medication, to the range of sensations that should be regarded as ‘normal’ after MI or possibly to an unrelated health problem. They valued follow-up care with health professionals who would take such worries seriously and work with them to find a treatment regimen that might suit them better, as well as pursuing further investigations.

Sometimes I get pins and needles in my feet, and a few aches and pains which I didn’t have before, but whether that’s the tablets or my age, I don’t know. But I did read a leaflet about the blood pressure tablets and it did say that sometimes you get tingling in your feet or your hands. So I’ve put that down to the tablets.

HA01, female, MI in 2003 aged 63 years

However, a couple of patients had struggled to make their GP or consultant understand that a problem that might not be particularly threatening from a clinical point of view could still cause a great amount of personal distress. This woman felt frustrated that after checking that her hair loss was unlikely to be indicative of a serious underlying health problem, her doctor did not feel the need to find an alternative to the medication she suspected to have caused it.

The doctor did say she would do some blood tests just to see if there were any other reasons why my hair was falling out. I think she did some calcium and some iron checks and some other bits and pieces, all of which are normal. So it’s obviously not any other reason so I’m assuming it’s the medicine I’m actually taking. [. . .] The main worry is that if it continues to fall out. I need the medicine for my heart and the doctor said, ‘Well when you stop taking the medicine the hair will grow, it’s not as if it’s a condition where the hair will not regrow back again’. Well, okay it will regrow back again but as long as I’m taking the medicine, it’s not going to regrow back again. So I’d really like to find something to give my hair a chance to regrow back so that I can see if in fact it was going to come back.

HA22, female, MI in 2003 aged 63 years

Shared decision-making, treatment preferences and expert patients

Some of the participants in this study who had been taking medication for several months or years appeared very well informed about possible side effects and drug alternatives. Through participation in support groups and conversations with other MI patients some had become conscious of the risks of polypharmacy (e.g. when they had been prescribed medication for an acute problem that had the potential to interfere with their regular medicine). This woman described how she had become more involved and vigilant about her prescribed medications since her MI.

Like I went to the doctor with this bad chest. I’ve had this cough for three weeks now and I saw him yesterday and I said ‘I can’t breathe,’ I said ‘I don’t know whether it’s my heart or my chest’ and he listened and he said, ‘Oh it’s probably your chest infection’ and he gave me some tablets. Now you see, I get the leaflet out now as soon as I get these tablets – ‘should I take this, what will happen if I take this now?’. So I’m then back in and I’m asking him and he’s saying ‘no it’s okay, you can take your tablets with . . .’ whereas before I would have just taken them. I wouldn’t have read the leaflet. But I do now. I study it very carefully.

HA01, female, MI in 2003 aged 63 years

For MI patients with complex medication regimens, increased involvement in treatment decision-making with non-cardiac health professionals is thus likely to have importance beyond the accommodation of patient preferences as a safeguarding strategy to avoid detrimental drug interactions.

Most patients accepted that there was going to be a trade-off between effects beneficial to their cardiovascular health and undesired side effects. However, they valued health professionals who invested effort into tweaking this balance in favour of reducing the burden of medication on their patients.

There was one beta-blocker I couldn’t take, it was making me really poorly so they had to work really, you know to find one that would suit me. But I think they’re pretty good, if you’re having problems with your tablets, that you go back and say, ‘this isn’t suiting me’ there’s always an alternative. There’s always an alternative to the drugs so you know, you don’t have to suffer side effects; there’s always something else.

HA03, female, MI in 1998 aged 53 years

Participants in this study were conscious that it might be dangerous to experiment with stopping or changing medications by themselves. Several reported very positive experiences with health professionals who were responsive to their dilemmas. This man was grateful to have a consultant who took seriously the problems he had been experiencing with a particular drug and was willing to take the risk of him discontinuing the medication – a decision that he felt had much improved his quality of life.

The drug was called amiodarone. And I felt that the side effects of the drug were in my case worse than the ailment it was treating. So some three months ago, I appealed to the surgeon to look into taking me off of the drug, or at least considering whether I could manage without the drug. And it was decided that since I had the mechanical protection if you like, given by the defibrillator, it would be worth trying to survive without taking this particular drug and I have to say I’ve been in excellent health and spirits ever since. Better spirits because I felt that after coming off of the drug, whether it be part in my head or not, that my mental functions were improved. I didn’t feel as sluggish, I didn’t feel as though I’d lost the ability to think and I found that my memory improved, all of which I found were very noticeable to me personally. Whether this is just me, or whether these are side effects that I am not aware of, I’m not sure.

HA08, male, MI in 1989 aged 40 years

However, in a few cases health professionals insisted on patients ‘giving it a go’ before they were willing to change prescriptions. One man who described himself as ‘having done an awful lot of reading around the problem’ including recent research literature on medication, took the initiative and suggested to his GP that he should be put on an angiotensin-converting enzyme (ACE) inhibitor. His GP followed the suggestion, but was reluctant to let him choose the type of ACE inhibitor at first.

A lot of the ordinary ACE inhibitors will give you a slight dry, irritating cough and when I first suggested to the GP that I should be on an ACE inhibitor, he gave me one of the standard ones and I said, ‘I don’t think that’s a good idea’. And he said, ‘Why?’ and I said, ‘because it’ll give me a dry cough’. And he said, ‘Well try it first’. So a month later I went back and I had the cough so we changed it. That’s not me being clever, it’s just that perhaps I’ve done more reading about it than [the average person].

HA23, MI in 1998 aged 49 years

Clinical necessity and personal meaning of medication

Many participants in the study had been prescribed a nitrate spray to use in case they were experiencing sudden chest pains. While some of them had to use the spray quite regularly, others rarely had any need for it. Nevertheless, the spray fulfilled an important function for them as a ‘safety blanket’ that they carried with them wherever they went – just as many of them said they made sure to always carry a mobile phone.

I feel very reassured by taking the spray, having it with me all the time, you know. [. . .] I was saving it up to start with to sort of for the very, very bad attacks and now I just use it for a mild attack of angina which is what it’s there for really. And I’ve asked the doctor about it and you know I said to him, ‘Does this do any harm?’ and he said, ‘Oh no that’s what it’s there for, it just opens the vessels for a time, just so the angina passes’. And I said, ‘Oh well all right’ and I use it a bit more freely.

HA14, male, MI in 2003 aged 51 years

One man, who initially was told that he was unlikely to need such a spray, but had read up about it in the written information he received at discharge, was grateful that his GP agreed to give him a prescription for additional reassurance.

The medication I’ll be on for life. I mean the cardiac rehabilitation nurse was able to explain, rather somewhat more than maybe the doctors had, some of the implications of those medications. But the other thing that he was stressing and which the booklets tended to stress was GTN [glyceryl trinitrate], which is a spray that you put behind your tongue in the event of pain and discomfort. Anyway, there were very sort of strong messages both on paper and verbally. So when I came to being discharged from hospital, I mean you’re supplied with a month’s medication by the cardiologists, the doctors, I was surprised that I didn’t have any GTN. And I asked the registrar, the specialist registrar why and he said ‘well there’s no indication that you need it because you haven’t had pain and there’s nothing else’ and I said ‘well you know, because there’s such an accent put upon it couldn’t I have it as a comfort blanket?’ and therefore what he suggested was that I just ask my GP for it, which in fact we did on the way back from the hospital.

HA02, male, MI in 2003 aged 54 years

Myocardial infarction patients’ experiences of follow-up care

Previous qualitative research has suggested that post MI patients want more consistent follow-up care and ongoing support for help with making lifestyle changes; to meet people with similar experiences; to have regular access to health professionals with cardiac expertise; and to provide reassurance to partners and family members.¹²⁹

Follow-up care arrangements varied greatly for participants in the study. While some participants continued to see their hospital consultant at regular intervals for several months, for others their GP became their main point of contact for voicing any concerns about their symptoms or requesting changes to prescriptions. Many patients reported very positive relationships with their GPs.

I have a brilliant GP. I’d vouch for him anytime. He’s caring, he listens, he talks, he checks. If there’s anything wrong he’d send you for an X-ray or anything like that, you know.

HA06, male MI in 1996 aged 70 years

Especially in the early days after discharge from hospital, participants appreciated having access to a designated health professional with specialist cardiac expertise who they were able to contact with concerns or questions between appointments. This woman praised the dedication of her cardiac nurse who phoned her back to check on her well-being.

The rehabilitation Sister’s been my lifeline. I’ve been able to phone her, she’s been phoning me and she’s, to make sure I’m all right when I’ve come home, and things like that. [. . .] And when I had the funny heartbeat I’d phoned her the day before and she’d phoned my GP and I’d seen my GP but he said I was, I was all right. But 9 o’clock the next morning the rehabilitation phoned me and said, ‘how are you?’ and I said, ‘I’ve still got this funny heartbeat’ and she says, ‘come in now’. And she was there like when I got there at the hospital, she’s been a lifeline.

HA03, female, MI in 1998 aged 53 years

Cardiac nurses were usually the health professionals who aided the transition from hospital to home.

I lived by that [the heart manual] for six weeks when I was at home and again saw the doctor every couple of weeks and then I went in to see the cardiac nurse as well. I could ask her lots of questions; [my wife] and I, we both went in to see her, and came out with a few of the answers and a few don’t knows but you know it helps to be able to talk to somebody who has been in the same situation or been with, been with other patients and that was good.

HA14, male, MI in 2003 aged 51 years

Having health professionals proactively checking up on discharged patients may help to reduce barriers towards help-seeking if patients experience symptoms that might suggest a repeat heart attack.

This man felt that having to wait for 3 months for his first specialist appointment after discharge was too long and this caused him and his wife some anxiety.

I then had come home and I’d sort of got an appointment, this was in March and my appointment was for July to see a specialist, which I thought was rather a long time. It was more concern to my wife, I mean she was very worried [um], I couldn’t go out of her sight really. I had to go and buy myself a mobile phone which is something, I don’t want a mobile phone but I always had to carry this mobile phone. And if I was out of her sight more than a minute or two, she was worried about it and I thought well we, I ought to be doing something sooner about this. So we tried to contact the specialist, to say, ‘well it’s a long time July, after a heart attack, to worry about is it going to come back, am I going to get it again’. And I really hadn’t got a great deal of information to work on at this point.

HA12, male, MI in 2003 aged 65 years

In some cases, communication between primary care and consultants at the hospital could be a source of uncertainty, as some participants said that they felt unsure about how much and what kind of information they could rely on to be exchanged between the two systems.

This man was concerned that his GP had decided to treat him with statins even though his cholesterol levels had not been checked in a primary care setting, so he was left wondering whether this was a ‘blanket’ treatment for MI patients or based on actual test results that had been communicated without his knowledge.

The one thing that does surprise me a little bit about the management of the condition I’ve got is the lack of blood tests. In terms of monitoring anything, because some of these problems can be explained by lack of magnesium or overactive whatever thyroid or again cholesterol level, I mean they’ve put me on a statin, but unless I’d been in hospital with a problem they’ve never checked my cholesterol level.

What is it? Why am I still on the statin? That sort of thing. Now, through my GP I get it checked once a year, and I don’t know if they pass that onto the hospital. Every time, they’re interested in my cholesterol because they think I’ve, because of all of this I must have had a horrendous cholesterol level.

HA05, male, MI in 2001 aged 37 years

In contrast, this man explained why he was very satisfied with the follow-up care he had received from his GP and the hospital consultant.

First of all [my GP] seemed to be pretty adept at prescribing the right medication for me. Secondly, I generally only went when I or my wife, usually my wife, felt that something wasn’t quite right and I ought to see doctor X. And so an appointment would be made and doctor X would look at all the papers and look at all the, you know, did some tests and said ‘there’s nothing much wrong with you, you know, you’re alright, you’re doing pretty well’. Might make a few adjustments to the medication and you know that made me feel, you know, better. Also a good thing was that my GP, who’s just here in the village, and doctor X work very well together. There was no professional politics going on which sometimes happens. And my GP was perfectly content to accept doctor X’s prescriptions or his, his recommendations and so on. But now, for some time now, I’m no longer consulting doctor X, (a) he’s moved out of the area and (b) there’s no need.

HA09, male, MI in 1995 aged 69 years

Another man said he had found it useful to write down the list of medications he had been prescribed so he could share this information with his GP without having to worry that he might forget something.

I wrote down everything that had happened to me, typed it up, the tablets I was taking and when I took them and whatever because it was so much easier when you go and see a doctor and we all feel a bit confused with the whole thing, I can refer to it or pass it across to him.

HA12, male, MI in 2003 aged 65 years

The Health Experiences Research Group interview collections

The qualitative data in the HERG archive were collected as national, purposively sampled interview collections which aimed for maximum variation. The interviews were all collected by experienced qualitative social scientists working with the HERG in Oxford. There are currently over 75 collections of interviews, each concerning a different health issue (ranging from pregnancy to living with a terminal illness) and each set comprising 35–50 interviews. All interviews are tape recorded, transcribed, checked by the interview participant and copyrighted for a number of non-commercial purposes, including secondary analysis and publication.

The projects all share a research question (What are the experiences and information and support needs of people with healthy condition X?) and a common interview method that starts with an appropriate variation on an open-ended question intended to invite a narrative response (e.g. ‘Could you tell me all about it from when you first thought there might be a problem?’). When the person has completed their account, a semistructured section of the interview includes questions and prompts about any issues of interest that may not have been fully discussed in the narrative. These typically include questions about treatment decisions, information, support, communication with health professionals. All participants are asked if they have anything that they would like to tell other people who are starting out on the same journey and if there is anything they would like to pass on to NHS staff at all levels, who might learn from the participant’s experiences. These questions often add rich, informative data about how services and communication could be improved.⁶⁴

Each of the interview studies starts with a literature and field review and sets up a specialist advisory panel including patients, professionals, researchers, clinicians, and representatives from the voluntary sector and (if appropriate) the funding body. The panel advises on the parameters of the project, including selection and recruitment of participants.

A maximum variation sample¹⁵ of 35–50 people is sought to help generate as diverse a sample as possible, including both people whose experience might be considered ‘typical’ and those with more unusual experiences. For each project, recruits are actively sought through a national network of primary care staff, hospital consultants and specialist nurses, advisory panel members, local and national support groups, advertising online and in local newspapers, snowballing through participants and personal contacts. Analysis and data collection proceed simultaneously and continue until ‘data saturation’ is reached to ensure that the widest practical range of experiences has been included.

Qualitative secondary analysis

A modified framework method was used.³⁷ This approach uses charts for a summary description of data from each of the interviews across a set of categories, which are later developed into themes for analysis. The process is iterative and flexible enough to accommodate both categorisation of data in terms of pre-existing ideas and organisational principles that have been identified as important to answer the questions at hand (e.g. areas of care that have been identified in the guideline scope) as well as emergent themes that participants themselves identify as relevant and important (e.g. experience of the hospital environment). Anticipated and emergent themes are then compared across cases, and will eventually be compared and collated across the different data sets to identify general and specific aspects of good-quality care.

Coding of the MI interviews proceeded by identifying vignettes from participant narratives that described aspects of the health care they had received and organising these into thematic clusters loosely based on the care pathway for MI. Vignettes were simultaneously coded for emotional response and emotional valence and cross-indexed with recurrent themes in patients’ experience of health care identified in previous literature,⁹ such as communication quality, trust and confidence, relationships with health professionals and care-givers, information and support needs and preferences, decision-making, autonomy and consent.

This process was supported by NVivo^® qualitative data analysis software, which eased the systematic collation of the full range experiences across cases for each of the examined domains (care pathway, emotions, aspects of care, patient evaluation). Findings were structured into nine sections and written up, illustrating key points with verbatim quotations from patients wherever possible.