Discovery: Getting the diagnosis
Receiving a diagnosis of heart failure will always be traumatic. Choosing the best time to give the diagnosis is also difficult because doctors need to know results of tests and have to take account of each person's needs. Some people want detailed information about heart failure straightaway, others need reassurance that something can be done to help them rather than information. Those we talked to expressed a range of different attitudes to getting a diagnosis and some were still unsure what heart failure meant (see 'What is heart failure?').
Some people had been given the diagnosis by a GP and liked talking to someone they knew about their problems; one man described that he was seen by two GPs from the same practice, one of whom has a special interest in heart failure. Several appreciated straight talking, one man said that he had received a very clear picture of his heart failure from a registrar and that he envisaged his heart as a 'withered hand'. Some thought that diagnosis should be balanced by reassurance, for instance one woman felt that being told something could be done reduced the shock of her diagnosis. Several people said they found it difficult to visualise what was happening inside their own bodies despite having been shown diagrams, ECG print outs and angiograms by doctors.
People who were given a diagnosis in hospital while recovering from emergency treatment felt confused by the diagnosis; some felt they had been unable to respond because they were shocked and couldn't think of any questions, and several felt they had been too ill to absorb information about heart failure. Some had other medical problems to cope with, e.g. one woman whose bypass surgery had caused some complications said she had never been given a diagnosis of heart failure. Several older people were unclear about what a diagnosis was or confused it with other heart problems. Some were unsure whether they had had a diagnosis; one woman for instance said that it had only been mentioned in passing that her heart wouldn't get better and that she hadn't taken much notice. Others described how doctors talked to them in detail about surgery and altering medication but didn't give them an overview of heart failure.
Several people only received a diagnosis of heart failure when they asked questions; one woman had been put on medication without realising what it was for and found out she had heart failure when she asked a doctor if she could stop taking it. Another man only realised he had heart failure when he saw a British Heart Foundation advertisement in a newspaper and asked his GP for confirmation. One woman who had waited 14 months to get a diagnosis said that heart failure cases should be dealt with more quickly.
The following questions and answers can be found in our Resources and information section:
· Do doctors and consultants talk to each other about whether or not someone has had their diagnosis?
· Is it possible to deduce you have heart failure by the medicines you have been prescribed?
· Are doctors obliged to give every patient a diagnosis if they have a serious illness?
Last reviewed February 2010.
Last updated March 2010.
