Thanks, @SimonInEdinburgh , I knew you’d had experience of feeling spaced out, so hoped you might be able to offer better advice than me. I do continue to find it both surprising and frustrating that as a stroke/TIA patient, you are offered very little advice on how to help prevent another; symptoms to look out for etc.
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That makes sense 
Yes I agree that the amount of information etc is woeful.
I’m beginning to try stirring a few folk into campaigning to do something about it. In part that is worked are welcome post tries to at least raise awareness of
Are you interested in being involved in the wider question?
Ciao
Simon
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Hi @SimonInEdinburgh I’m not sure how much help I’d be, or how much time I could devote to it (I’m already involved in a cancer charity) but count me in x
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Cool
Early days yet - I’ll keep you posted
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Hi just spent 12 hours on a&e on back of spacey moment which turned out to be nothing of note had to wait longer because they wanted me to see a stroke doctor before I cam home and that was not possible until early morning. The only advice they gave me was if you have the symptoms allied to the word FACT call 999 and if by the time they arrive you still have symptoms they will take you in, or better still get someone to drive to straight to a&e if you have that option .which I don’t. Going to a&e during the night with stroke symptoms it’s largely a waste of time it seems if you need a scan there are no clinics open to do it so bit of a lottery .
not sure this helps too much , so good luck to you all, and thanks for your time
wattsy
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They are relying more and more on the leaflets they hand out to give that kind of information but I don’t think they’ve read them themselves. And then, not everyone even gets those either.
I know I’ve still got mine somewhere but I couldn’t even read them at time. And not easy to read when you’ve got aphasia and your eyeballs can’t stay in one place to read either…so maybe they went in the bin when I got home 
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I was given nothing - no advice, no information, no leaflets 
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You’re definitely right to go to a&e while you don’t have familiarity with the symptoms
I hope they told you You did the right thing and to repeat it anytime you need.
Unfortunately seems typical to have the hours in a corridor for a few very spaced out minutes conversation isn’t uncommon. So is the path with a CT scan thats then “well a CT scan won’t show anything If you’ve had a TIA…”, similarly the “well we took your blood pressure and it’s very high but then that’s probably why coat syndrome…” That leads to no conclusion other than have 28 days of 75 mg aspirin… And an extension of your driving ban…
C’est la vie
@Ann1
Do you still have any information needs? You could ask here because there are many people sharing their experience and it might answer your questions
Ciao
Simon
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@SimonInEdinburgh i found myself here because I’d been given no official information- I don’t have any specific questions, (as no one seems to be able to tell me how to make sure there’s no repeat!) and I am now (finally!) in touch with the local stroke outpatient/ follow up team. It’s just that you have this potentially life changing incident then … okay you can go home now!
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Yeah its ridiculous on that level isn’t it! “You could have gone out of here in a box but instead you’re walking out or being wheeled out at least and have a nice life…”
The opposite common theme is “It seems your brain isn’t capable of sorting anything out at the moment but here are 955 different leaflets that 30% say the same thing 20% contradict each other 40% are not realistic and 10% might be relevant to somebody else…”
I managed to speak to one of the co-creators of the stroke pathways guide for Scotland this morning and also a board member for the annual stroke conference. Amongst other topics we had discussions on exactly this theme.
Maybe we can do something to improve for those who follow down this path in future
Ciao
Simon
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It’s frightening really, when you think of all those stroke survivors who are not tech savvy so have no access to the links of these forums. They’re probably left completely in the dark.
I do know Manchester university is addressing this sort of after care information. There are a couple of researchers specifically assigned to the Aphasia side of the programme for aftercare. They showed us an example of what the leaflets look like and they were horrendous. They seemed genuinely excited to get our feedback, it was like they’d never had such a captive audience before. It’s going to be interesting to see how it all pans out. I’ll have to get the name of the research programme at the next meeting because I forget what it’s called 
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Yes please do and the reseachers too please. I know two other similar initiatives
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