Make the most of this community?

99% agree

I add one plea; that what is written does not have to be attributeable to the writer in all cases.

Occasionally folk want to post anonymously and that is a facility of the software that could be enabled.

It does nothing to restrict the reader being able to read what has been written


The 1% is the assertion that it is not broken - clearly there are those who are moved to express disquiet even anxiety


Actually the more I think the percentage is going down because I’m a 98 now But that still means overwhelming agreement on the material content

I do fear - every time I log on - significant anxiety

Not from the other community members…

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Or perhaps not
“I will address some of the points raised. @Nigelglos your first post is quite detailed and has some points which are outside of the online community’s remit so I will need time to reply to you, which will most likely be Monday.”

" I recognise that you want to give feedback and engage in dialogue with me, but I hope you can understand that receiving feedback in this way can be quite overwhelming"
"I won’t be joining in any further conversations within this thread and hope you can understand the reason for this decision. "

I’m sorry if this isn’t more charitable…but I am not sure that someone who feels this uncomfortable engaging with the forum should be involved in any way in it’s supervision.
There is no time pressure other than a reasonable amount. What was the criteria for the role ???

First impressions count and my impression here is not at all favourable. Add to the missed deadline, not good at all.


I think you may have misunderstood Bobbi. There is a function which I think Admin would have to enable, which allows individual members to switch to anonymise themselves if they so wish. This is not about closing the forum to public viewing, which I have no desire to see either. But if Admin enabled this Anonymous setting, then individuals could go into their profiles and switch on the Anonymous function if they so wish.


Generating it from a strokey brain IS AS WELL no " can" about it.

The reaction that are standard cause me anxiety… I thought this was supposed to be a safe space and when it isn’t I thought feedback was supposed to help make it… Been more than a year that I’ve been trying to say I’d like to see the values on the website adheared to in the actions

I had a meeting recently that I think is the cause for some hope - management responsibility has changed and while that was a few months ago maybe foundations are being laid?
It would be nice to have had consultation. It would still be nice to have consultation. Might still happen - fingers crossed.

I repeat here something I have said many many times elsewhere: if we want to make a difference for #StrokeThrivers then we are better off mutually supportive of and by the stroke association and not at loggerheads

Since posts here are increasingly prone disappear I’ve copy this and wil put it on Facebook if I need to.


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The admin are stroke association employees

There is one moderator who has had a stroke and is a long running and respected member of the community

I think (fairly sure) The facilities available to moderators do not extend to playing with the flair.

I’m shocked to hear your interpretation of the flare as a “bad boy bomb” !! My understanding is it is an optional mark that shows that you are a member of the zoom open group. There is traditionally a flare per group on other discourse but there is only one here although there is more than one group… Did you know by the way that groups can be closed from public view?

I think you’re AI concern is material.
I think the use of the posts here to form a data lake for research which would not be a registered use under the data protection act given the terms of service I saw but would be the obvious way of significantly monetizing the forum

I think that deleting account as a user also hides all your posts - But I’m unsure of that. There is an option for admin to delete a user ID and leave all the posts within an anon user ID so the community doesn’t lose the value of the contributions made. It’s a significant loss.
For example Choldog and Mahoney had the most excellent contributions about the emotional adjustments to being a better person poster stroke and those posts are now lost to us



I have decided to change my profile so that some of the info isn’t accurate or fully complete.
It’s not necessary to be accurate on here profile wise for it to function correctly


@Nigelglos. Apologies for the delay in responding to your post.

The purpose of the Online Community is to provide a platform where individuals can connect to give and receive peer support through their lived experience of stroke. Whilst we do support some of the wider charity’s work, research and campaigns activities are managed by teams that are not part of the Online Community.

There are lots of ways that you and others who are part of the Online Community can get involved in the wider charity’s work. Please visit our dedicated research page on our website. If you would like to know more about how you can get involved in other work including campaigns. You can find out more here.

The Stroke Association has lots of information on stroke effects and recovery that’s available on our website, or our stroke helpline can offer you information and support too. You can find out more here or contact them on 03033033100.

We will not be offering zoom calls as part of the Online Community as we already offer this support. Online Activities offer a wide range of free daily activity sessions via zoom. There is also a new information and peer support session which is currently being developed that will include experts talking about different stroke related topics. You can find further information about Online Activities and other Stroke Association support in the left sidebar by clicking on ‘information and support’.

We welcome feedback. It is important to be clear on the best places to go to ensure that you are giving feedback to the right team.

If you would like to give feedback that is specifically about the Online Community then please use the online community feedback form.

If you would like to give feedback about other areas of the Stroke Association then you would need to use the Stroke Associations complaints and feedback process.

Many thanks

Hi all,

The purpose of the online community is to provide a platform where people can connect to give and receive peer support through their lived experience of stroke. The conversations no longer align with the purpose of peer support. Therefore, we are closing this thread.

If you would like to give feedback on any of the topics raised in this thread please do so by using the online community feedback form which you can also locate in the left side bar under ‘more’.

If you have a specific query or request, you can do this through the service desk here. If your request is to make changes to your account or profile, please remember to include your username.

Many thanks