Social Media Will Give Survivors More Power to Influence #Stroke Policy & Discussions.

Kate Allatt
A Rocky Stroke Recovery

December 29, 2013

At the Stroke Research Network conference in Wigan on World Stroke Day 2013, this slide was welcome, very welcome indeed.

I sense the stroke survivors community can feel disenchanted by the relevance and type of messages they receive from other stroke charities and Governments, from across the world.

For example, I received these posts on my Facebook sites, regarding the relevancy of some of the messages we are often told. And these are the so-called, stroke experts! Stroke survivors do feel let down by the system. Fortunately, we are embracing social media to make sure we get heard, along with receiving the emotional support WE need, post-stroke! So many traditional stroke support groups have been axed up and down the country, due to funding, along with a change in the way we often like to communicate now.

eg. Elizabeth wrote this,

‘In the US, this is mostly load of crap or day for our useless stroke groups to spew their nonsense about stroke. How it’s: Preventable, Treatable, and Beatable. No, no, no,….almost nobody recovers 100%, stroke is increasing and is the greatest cause for disability. Our organizations are failing miserably, and everyone just clamors along. We need real change here in the US, the status quo is not acceptable!!’

Your work is exactly what needs to be done to change the current protocols that are not working. It just seems that in the US, they have been abusing “world stroke day” as a marketing ploy by our stroke “advocacy”(NSA, AHA, WSA) groups to fund their useless agendas. Your charity and those like it are to be supported, championed, and recognized.

and Yvonne said this…

‘We know the facts as they are presented …and what choice do we have …the few of us that try to make a difference do…..however small…..Kate should be applauded for her efforts ….we all have to fight this fight ….and it is a fight, almost nobody recovers…..but they DO …call it miracles ……call it what you want….PEOPLE DO RECOVER ……to some that is all the hope they have and it should not be taken away.’

I say ‘POWER TO US!’

Furthermore, my thoughts:

• This stroke internet community and charity is influencing change.
• We have the power to insist we get the kind of information and support we want in the future.

HAPPY NEW YEAR!!!

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Social Media Will Give Survivors More Power to Influence

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A Rocky Stroke Recovery