Developing My Stroke Guide

Hi folks,

 Id like to turn your attention to an article in the 'News' section on the front page of My Stroke Guide. Essentially the MSG team are looking to revamp parts of this website and we feel that this is your chance to have some say in how it could be made better. I have to say i personally feel its easy to get lost in the forum and sometimes miss posts when people are looking for help/reassurance etc. It feels a bit clunky and disjointed which may not be helpful to first time users or those with lots of experience?

While i dont have any say on MSG development  (im far from a techie)..i am keen to help make MSG a better tool. Its great, but could be better eh?

It would be really helpful to hear from you if you would be interested in feeding in some thoughtd regarding how you think we could make things better. If you are keen to help just reply to this post and ill let the MSG team know or if there are things that you feel are difficult to use on here just add that in too. Ill then alert the MSG team to this thread.  I think that may be the best way? It may not be and i'll get in trouble for it ? ... 

Here to help and thats why i volunteeted for the forum stuff which im really enjoying, thanks!

Best wishes,



Exactly what you say Jason. The forum is hard to follow. Needs a rethink. Just imagine what its like trying to use the site a few days after a stroke.


Totally agree Colin. Just trying to read your reply took a few taps.. im no forum guru but im a fan of simplicity.

As mentioned in my post there are wheels turning to make the forum a bit easier to use so insights from folks who use this frequently would be most helpful. 

Would you be willing to help ?


Hello Jason I have taken the liberty of copying the post I sent a week ago to James, which tries to convey some frustration at trying to find a way through the website, thanks:

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

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The one word answer is yes.

please have in mind that i had a stroke, my brain no longer works. Memory is just atrocious.


Patricia, i read your response a few days ago. Thank you for responding to this one. I agree, we dont always get things right. I may be wrong but this website may have been set up with limited involvement from stroke survivors which has highlighted some operating issues. As ive been involved (voluntarily) here since May ive seen a lot of things relating to how the forum is quite tricky to navigate.

 Would you be interested in feeding in any info to the discussions going forward? The more the merrier (i hope) ?


I think what the team may be looking for is feedback on how the forums could be better so hopefully quite conversational rather than requiring a lot of thought or work. Thank you Colin!

This is possibly one of the most disorganized sites I have ever used. I consider myself to be fairly computer savvy, but have real trouble navigating the different pages, which seem to have been added in a very "ad hoc" manner with very little structure. Someone who knows what they're doing needs to rip the whole thing up and start again with a much clearer structure and menu.  I'll happily be your beta tester!

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Hello Jason,

I think one of the biggest issues is embedded replies turn up as latest activity, even on posts that are months old, so one goes to respond to someone and then it seems the post is, say, seven months old, and one wonders if the person is still active on the site or wanting responses. So for instance, this post came up in recent results because of a recent reply, but the original post is one month old, so has the topic become redundant for the poster? Or is it still a relevant live topic?


Hi Rups! 

Thanks so much for responding. Its so useful to hear feedback about the forum, as i mentioned im no techie so i often find it a bit tricky to navigate the forums or to find posts before they disapear. All my discussions on the forum relating to this topic will be fedback to the team who are looking into making My Stroke Guide a bit more user friendly, personally i love the platform and id be keen to help, conversations on this will help. So thank you for your time, much appreciated.