The UK stroke forum 2023 is on at the moment
( if you’re reading this after it’s over The hashtag and the people who are identified in tweets will still be in the ecosystem)
Telling delegates that less than 1% of people who needed a thrombectomy received it in 2022
That is 99% whose lives now have a bigger struggle than would have.
There are national stroke guidelines for care pathways - they’re not being implemented, is there’s any one accountable?
Also asking “how they can identify inequities in care?”
We could & should tell them - If you still have a Twitter account after Musk took it over maybe you’d Search for the hashtag #UKSF23 and reply to the tweets
Let’s get a conversation going
NB we’re prohibited from attending!!
Might help us to have our voice more heard
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@SimonInEdinburgh I’m not on Twiiter or x or whatever it is now, but if this information is correct I find their attitude to be a mixture of distasteful and disgraceful. Beyond that I’m just lost for words to describe the shameful ineptitude of people failing so massively in their task. I do think that naming and shaming is called for here because somebody is responsible.
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I’m Old-School and stay away from Twitter and Facebook. I find sites like this one and YouTube videos on stroke and exercise very valuable. I also like the info on reputable research discussed in articles like Pub Med, Harvard studies, and Johns Hopkins.
I also tune in to Reddit.
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Are you on Reddit stroke?
They (we?) Have a discord server too but I don’t post there often
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Hi Simon: I just read the dialogue going on at Reddit.
I also find the American Stroke Association Valuable: I read this today:
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Well maybe you should sign up! Just thought professional purposes
I think it’s a digital highway
if you go into the wrong nooks and crannies you can turn up some truly awful crap .
But
If you follow hashtags like UKSF23 then you’ll find it full of Drs, Profs, etc swapping work type information
Some of the things they say are really encouraging but some show the gaps in either understanding or approach or both really dramatically 
Such as “we really need to find out what the unmet needs are. We know that they’re not met …” and "it’s vital if we are to find out to actually talk to the stroke survivors”. Well DOH! Come visit then.
footnote " lived experience experts brackets stroke survivors close brackets are not permitted at the UKSF"!?
Of course there’s lots of good conversation going on as well and lots of networking - let’s network with them !!!
A example of a good stuff:-
There’s a exhibition stand for interesting visual neglect research which has a QR code that is scannable and turns up a website of tools! - I’ll post later if It’s got promise
The real point is we are a large collection of the people who actually know the answers to the questions that are being asked by people there
We should be actively sending representatives. The SA should invite us!!!
but we are unorganised so don’t fulfil the promise that we could have in our own best interests
Worse attempts to seek assistance with it have been frustrated, frustrating & painful.
I think that’s the real shame
I also think that that is changing - fingers crossed
Ciao
Simon
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Ahhh
I had forgotten the term Charlie horse which doesn’t translate on this side of the pond
We just use the words cramp and spasm.
Anyway I’ll have a look later - probably after UKSF is finished on Wednesday
I’ll bookmark it with a reminder timer
Ciao
Simon
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The CEO of the stroke association charity pockets a very healthy £100k + salary.
I for one find the whole environment around stroke to be distasteful at best.
Hard facts around research and care pathways and levelling up care and attitude towards care and treatment etc.
I’m deleting the app from my phone.
Good luck to you all and stay present and positive
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Hmmm she is CEO of a £30+m pa org. That doesn’t seem a disproportionate salary .
What is more worthy of investigational consideration is that 6.5 million spent on fundraising 2.5 million spend on research?
Clearly the arguement runs ‘if you don’t successfully raise it you can’t spend on research’ - does seem a big chunk though
And also seems worthy of comment is it’s not hard to find people who have less than complimentary things to say.
There are plenty of good services. Very patchy delivery it seems and a lot of opportunities for improvement that don’t seem to be embraced or even recognised perhaps
I still think we’re better off improving than opposing as energy is spent unproductively on both sides -
2¢
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