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.
- Age at interview:
- Is a married father of 2 adult children and retired charity worker. Ethnic background/nationality' White/English.
How about looking up information? Have you looked up information about stroke at all?
Know thy enemy is the way I put it, yes I've looked up quite a lot of information about stroke, what caused it, what methods that they've got nowadays of easing the disabilities and so on. For example, there's a new device out now which is, it goes onto the hand and gives electronic messages to the brain from the fingers. So it will enable, enable the, the hand to actually grip even there is no conscious way of making it grip. Ahg I'm, I'm not putting this very well but I think you know what I mean by electronically making the, making the hand grip.
Stimulates. Yes. It stimulates the nerve endings.
That's interesting and I mean, how have you found the information that you've come across?
Very useful. Very useful. Again, know, know thy enemy. Out of a matter of interest really when I was in, when I was in, I was in hospital, I read extensively about stroke because I was fighting it. Now, it's just a matter of interest now.
- Age at interview:
- Is a married mother of 2. Was a production operator but is not working because of her stroke and young family. Ethnic background/nationality' White/Scottish.
How about looking up any information? Have you looked up information about stroke?
Yeah, I've done that. I've got a lot of information from the hospital and off my occupational therapist and I've looked it up on the Internet as well. So I've looked up a lot of information about it and' I think it, it, it brings home that not every stroke is the same. I only thought there was one stroke and that was it but obviously there's different types and how they can affect you and everybody can be affected differently and that. So I've learned a lot. Yeah.
Anything that sort of surprised you about the information that you read on the Internet?
Well, to be honest with you, it was more my husband that read a lot, but a lot of the information on the Internet was information that I already knew or, or I already had because we had a lot of information packs on it anyway. It was all' telling us like the cause of ones and that and, well, we really knew the causes by then. We didn't at first before, like, I had a stroke, I didn't know what caused it or if anything caused it but we knew the factors and who, who was at risk but we had had a lot of information off the hospital. So it, it was really just the same information.
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.
- Age at interview:
- Is a married father with 2 adult children and a retired charity worker. Ethnic background/nationality' White/English.
Wife' At, at the point when you come out of hospital out of rehab, you need a lot of information for the patient and for the carer and' it would be, it would be overwhelming to have it all at once but then you need it all at once because it, it you need to know it's there even if you don't access it straight away. It would have been nice to know that there were things for carers going on, although it took me a while before I was able to leave him on his own and go to things' But we did have help from the, the social workers in the rehab unit organised the claim for disability living allowance and incapacity benefit and blue badge and told us about anything we wanted to know on that score, so that was good' So that we got everything that we were entitled to, without means testing [laughter].
Have you looked up any information about stroke at all?
Wife' We've had all the' we've had various leaflets from the Stroke Association about cognitive changes and' I had some background knowledge of stroke because my sister had a stroke in her early 30s and I knew that one of the things which people don't usually recognise is the emotional changes, so I was prepared for that... But we got yes, leaflets from the Stroke Association I think the main source of information and also I think staff at the rehab unit were, were quite useful at the psychologist they had particularly was quite good at explaining how the different parts of the brain were affected' and I know I've probably forgotten it all now but it was, it was quite good to have somebody to explain it then and, as I say, to have literature that's available. I don't think we've used websites much, have we, because we read things at the time really' But I think if, if you're not aware that stroke can cause the sort of mental and emotional damage, it can be a bit of a shock that there are, there are changes in [my husband's] thinking which is very hard to put a finger on but it, they, they're different. It's not quite what it was before.
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.
- Age at interview:
- Is a married father of 2 adult children and 2 stepchildren. He works as a senior psychiatric nurse trainer. Ethnic background/nationality' White/Welsh.
Well, I've got my own computer in work, so I do go on the Internet sometimes and look up things. So generally I think it's out there if you know where to look and your a bit persistent and you just keep looking so you can get some I think if you want to actually speak to somebody face to face and questions, it's the difficult bit. There's not many opportunities, certainly not, not locally. I can do that but Motability, the only information I've had is just off the Internet and all they say is just go to a garage and ask them because sometimes they have someone who specialise in Motability schemes and they work for their garage. So I'll probably be able to do that next but apart from that it's just information off the web about the sorts of cars, different types of vehicles that can be adapted for wheelchair access.
No. I know my wife did and some friends did when I first had it. I did ask someone to bring the information in that they got off the web but they said no because it was all pretty negative stuff and it was stuff saying the vast majority of people who have the type of stroke that I had die.
- Age at interview:
- Is a married father of 2 adult children and a retired civil servant. Ethnic background' White/Scottish.
Have you looked up any information about stroke?
Oh yeah. Internet, yeah. And read it big time. I've looked a lot into it, yeah. Mm hmm.
How have you found that information that you've found?
It's very good. Very good. Yeah. Especially the preventive side, you know, how to prevent a stroke and that's been good. It's too late for me but looking at all the things now, what you can do to prevent a stroke is excellent information and, don't get me wrong, the, the post-stroke is good too. It really is good what you can do.
Can you tell me about some of the things that you've maybe found out about that you were surprised at?
The first real surprise was how many people have strokes. That's a big, big thing. I was really surprised at that and the Different Strokes website there's a message board and that's excellent, you know. But that was a big thing, how many people have had strokes and another thing was the difference between Scotland and England. There's a big, big difference. I've read letters from England, they're people saying that they're waiting on physios to come and see them. They, they're on the waiting list for a physio and things like that and I can't understand that, understand that because up here, it wasn't a problem. Don't get me wrong. I had a fortnight's wait but they were in and they were really, really good and I had them for 7 months. But it seems down there, there seems to be a kind of waiting list or the treatment's not that good. So that's one of the things I found surprising too from the website.
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.
- Age at interview:
- Is a married mother of 6 adult children and a retired neuropsychology assistant. Ethnic background/nationality' White/English.
You mentioned throughout about information. What's important to you about getting information about stroke?
Well, for instance, when I had when I first discovered I'd got post stroke pain, I discovered that the occupational therapist that was treating me at the time had never heard of it and I don't think the GP I was seeing at the time had ever heard of it and I only heard of it because I asked for information about frozen shoulder and the information, the booklets, the very good booklet that the Stroke Association sent me about frozen shoulder was mainly about central post stroke pain. I think frozen shoulder is part of the whole thing of it and incidentally that only happens if you're not in a stroke unit and the nurses where you are don't realise that if your arm isn't laid in a particular way at night when you go to sleep and you lie on it, you will get a frozen shoulder but there are hardly any stroke units and so that would be something useful to know in case you go into hospital [laughter] because a frozen shoulder with central post stroke pain is the most terrible pain. It's the most terrible pain I've ever had.
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.
- Age at interview:
- Is a married mother and has 2 adult children. She works as a temporary legal secretary. Ethnic background/nationality' White/English.
The trouble is when you start looking at things like that, you get contradictory stories. You look on one thing and it says something and you look at something else and it says something different. I'm a great reader of the Express and the Mail. I always look at their, their health thing and get all sorts of tips from that and that sometimes mentions stroke and things. But I don't, I don't generally, no because you start getting into the realms of what you don't want to know possibly.
What's your view on getting health information?
Well, I avidly read, as I said, the Express and the Mail on Tuesdays when they both do a health thing and I sort of look through for bits that interest me and I've got a whole pile of pages that I've saved under there that are giving tips about various things. I don't look at them very often but occasionally I'll look back on something and, and say, 'Well, that would do me good or that would do me bad' but you know they have come out recently the fact that omega 3 you're wasting your time. What do you believe? You know, I always feel that I try and do the right thing I only eat omega 3 eggs and I like eggs and I feel if I've got eggs that's doing me good instead of doing me harm, then I might as well, I know it costs more and I'm probably an idiot but I just feel, yeah, just doing the right thing but you never know, do you? [Laughter].
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