Finding information about strokes

People we talked to had found out about stroke from a wide range of sources including the general media, medical dictionaries, libraries, leaflets, books and videos as well as from the professionals involved in their care and internet sites. Some recommended getting in touch with a support group or voluntary organisations (see 'Support from other patients and support groups'). 

The Stroke Association, Chest, Heart and Stroke Scotland, Different Strokes and Connect were mentioned as welcome sources of advice and support. 

Several people commented that since their own stroke they had become very aware of any news articles and reports of famous people who had been disabled or died from a stroke. 

People who have had a stroke often find that they cannot concentrate as well as before, or remember what they have been told. (See 'Thinking, understanding, memory and fatigue'.) Explanations from doctors and nurses were sometimes described as too medical, technical or detailed for the patient to understand. 

One man commented that a booklet that he would once have easily read and absorbed in a single day now took him all week to get through. Some stressed how important it is to be given face to face explanations and opportunities to ask questions but also have the information backed up by written material for later reference. Hospitals sometimes provided a Stroke Book with plenty of information and spaces for writing notes and appointment times.

Nurses, physiotherapists and occupational therapists (OTs) were particularly praised as sources of information. One woman commented that she could ask her physiotherapist anything she liked, at any time, and therefore felt no need for additional information. 

The internet is an important source of information for many. While younger people, or the friends and relatives of older patients, were particularly likely to consult websites, we also talked to an 84 year old man who was learning about computing and had just passed typing exams. However, one man pointed out that people who are rushed into hospital as an emergency clearly do not have time to access the internet to help them make choices about which hospital or surgeon they might want to look after them. 

It may be several weeks or months before the person is in a position to look for their own information, although friends and family members often trawled the internet for information on their behalf. One had asked a friend with internet access to look up potential treatments on her behalf. Sometimes family or friends were believed to have censored information that they thought was depressing.

Although most said they were broadly satisfied with the information they had been given several people were left with unanswered questions about their condition (including, sometimes, why it had happened). A woman who had had a bilateral stroke (that affected both sides of her brain and body) during an operation felt that her doctor had not really explained how it happened - but wondered if maybe he hadn't told her because he didn't understand it himself. A man who liked the straightforward way his consultant talked to him commented that some of the more junior doctors were less direct “Some of his underling doctors, they hedge and they're not quite sure, so they don't commit themselves if you ask them a question.” An elderly Pakistani woman said that she was not given information but thinks that the medical staff did talk to her sons. 

Some people gave concrete examples of the benefits of looking for information for themselves, which included developing an expertise in their condition. 

Not everyone wants to know more about what has happened to them. One woman thought that a diagram she saw in the ward was alarming and didn't want to hear more. Some of the older patients in particular said that they preferred to avoid details - a 93 year old woman said she would 'absolutely not' want to know more about stroke. One man mentioned being recommended Robert McCrum's book 'My Year Off' but wondered if he really wanted to read about someone else's story of their stroke. Others commented that they would read something if it came up in the papers but would not go out of their way to seek information about stroke. 

Several others said they were happy to trust their medical team to tell them what they needed to know - including a person who had to make a decision about whether to have surgery after a series of Transient Ischaemic Attacks (TIAs).

Last reviewed June 2017.
Last updated August 2011



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