Heart failure

Looking for information about heart failure

Most of the people we talked to had been given information about heart failure by their own doctors and nurses, or from leaflets available at the hospital or GPs. Some wanted to know more and had sought information from support groups, the internet, books and medical journals. Several people said that if there was anything they particularly wanted to know they made a note and asked their doctor or specialist nurse next time they saw them. (See 'Getting the diagnosis of heart failure'.) 

People had different attitudes to information. One group were quite interested to find out more about heart failure but did not like to think of themselves as taking a 'morbid interest' in their health. A man who was given a book to read about heart attacks by his nurse said he gave it back to her because he found it too gloomy. Others felt they had been given enough information and implied that to look for more would suggest that they did not trust their doctors. Some people did not want to find out more in case they found out something they would rather not know; people made comments such as 'the more you know the more you worry' or 'a little knowledge can be dangerous'.

Some people wanted to find out as much as possible and used the internet and went to libraries. They described wanting to check up on the side effects of medication, to keep an eye on what was happening to them, and appreciated getting tips from other patients. One man had bought medical text books and said he thought he knew as much about heart failure as his GP; another person looked up his medication in the British National Formulary (a list of all the medicines which can be prescribed in the UK). One man explained that since all the information is out there on the internet, you'd be an 'idiot now if you don't want to look'. He pointed out that not even doctors could keep up and know everything.

Unfortunately, not everyone who looked for information found what they wanted. A doctor, who described himself as a competent computer user, could not find an answer to his question in the British Medical Journal or on the internet. Another man said that he couldn't make sense of what he found. Some could not search the internet because they didn't own a computer, though one man said he knew he could use computers in his public library. Another said that his daughter had printed out information for him from American websites, including information about a book called 'Success with Heart Failure' which included accounts of how people of 'different ages and stages in their lives' had coped with heart failure.

People also searched the internet to find out what it was like to live with a medical device. Angela was initially fitted with a pacemaker but her symptoms didn’t improve and she felt isolated. Through the Pacemaker forum – an online service - she realised her pacemakers wasnt working for her. She was later diagnosed with dyssynchrony (where different parts of the heart are not synchronised) and fitted with a Cardiac Resynchronisation Therapy (CRT) device.


 



Last reviewed April 2016.
Last updated April 2016.

 

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