A University is looking for a stroke survivor to share their experience with a group of undergraduates (via video call, not in person). The session is on the 2nd October at 2pm.
You should be able to talk about your experience of stroke for 5-10 minutes, and be happy to answer questions. The session will last about an hour in total, and the University are prepared to pay £85.
You will need to be relatively computer literate, have a webcam and a microphone and have a good internet connection.
If you would like to find out more about this opportunity, please email firstname.lastname@example.org.
Hello James, I see an opportunity to give a voice and share some issues that may be common to other stroke survivors. I can also express my concern about some of the situations that arise for the stroke community, from what I read on the forum. I don’t have webcam and microphone so you’ll have to accept my open communication.
This forum means that we get first hand experience, shared by survivors their carers and friends plus all sorts of information and support from these people. A point which has been made before is that it’s not very Stroke friendly! If the post is interesting and lots of people have something to add on other things, then it disappears very quickly and is lost to many readers. The Stroke Association appear not to appreciate what they have and are losing sight of.
My other point is driven by a couple of recent posts from people who have had recent strokes and are”lost in the care system “. Whilst the Stroke Association have produced the following report: Stroke recoveries at risk report: our recommendations,... forum readers need to be aware this exists (front page of the main site) and the Stroke Association need to be aware that some readers go only to the forum so may miss things like this report.
One of the recommendations in the report is: Stroke teams should follow up with all stroke survivors who had a stroke this year to review and address their recovery needs. NOBODY in our situation would ever disagree or fail to support this. My sadness is that it needs to be written in the first place and who is going to start taking some action? Is the Stroke Association taking action on our behalf and can they say what is happening to improve our situation? Fine words butter no parsnips!
There is a campaigns email address at the Stroke organisation to support things raised in the report, but as a stroke injured person I want someone who is not suffering constant pain, fatigue, anxiety (..add your own ailment to the list) to lobby on my behalf and help. Try reading some of the posts from those who need help and, as an organisation, explain to them what action you are taking that will help them. You are the experts who should help and defend those who are suffering. The forum is truly wonderful, but the Stroke organisation needs to do more for its members. No payment required for allowing me to share my thoughts, all given freely! Patricia