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Hi Alex, just wondering if you note the comments made by SS on this site??

Hi NicABella21, 

Thank you for your question, 

Moderators/Site managers keep topics organised and the community safe and free from online harassment. We can also make decisions regarding content such as identifying unsolicited content and advertising. A moderator enforces the policies aligned to the forum and detects inappropriate images, user-generated comments like profanity, insults, unwanted advertisement, bullying and hateful sayings and remove them to protect community members. I hope that answers your question. 

If you have any further questions regarding the Moderator's role please feel free to email me at 

Thank you, 

Hi - I think the comments usually made on here are mainly to do with the difficulty navigating the site rather than the role of the moderators. I know it's difficult to compensate for every person's individual struggles but some are regularly complained about. For example, Only this week, I  discovered that there is actually a purple border around my screen with back arrows on to get back to the first page and I'm a regular on here - 2yrs plus!  Like most computer readers, I use my computer's back button which didn't take me back to the first page. 

The problem is what maybe obvious to some isn't to others. In my case, my brain tends to dismiss anything it feels is not a prioity when readingfor example it concentrates on the main task - reading and typing not the surrounding screen. I still don't know why I can't post a photo or why I can't add any details about me on my profile.  Various times, people come on here and explain that they can't do this or the other and we rely on other SS's to help. 

I couldn't agree more. 

When I first joined I made the same comments. Suggesting the site was returned to the original format.  I found that much more navigable and provided me with easier and greater access to help and support from fellow S.S. 

But sometimes I wonder what do we know we only survived a stroke and live with its consequences daily.  We couldn't possibly know what helps us best.

Ouch. But spot on.


The problem with the site is that the stroke survivors find it difficult to navigate, (so do others actually), and there are regularly comments about the layout and operation of the site e.g. navigation etc.  It might be worth spending some time reading previous posts, relating to the website problems, or contacting some of the stroke survivors for their suggestions.  

Actually there are quite a few of us who also find the site to be somewhat overly censorious - words relating to dying/death are deleted.  These people have survived a stroke, they are stoical and do not need to be sheltered from reality.  


I've sent a stroppy post back to the person who posted about moderation etc (Alex).  I'll probably be on the naughty step, or worse I'll be ... BANNED!!!!  ?


Just wanted to also point out one other thing that has been questioned many times but, as yet, I don't think anyone has responded and that is this:-

The first page shows the last 10 posts. As the site is now getting busier after the festive season, more people will be posting for the first time. What happens to someone's post who is the 11th, 12th, 20th in the queue and so on. Where do their posts go? Obviously when 10posts are written, people start responding which pushes everyone else back down the line but we have no way of catching up on those posts because we don't know where they are or how to view them.  With the old system, the first page showed the whole day's posts so you could click on the button and view them page by page so no-one's post went unread.

If I was a newcomer to the site and couldn't see my post when I knew I'd written it earlier in the day, I would presume that the site wasn't working properly. This is something that could deter a lot of people from joining in. If two people are having a conversation on the first page, the last 10 posts can be taken up in seconds and if a newcomer managed to post in between these, they are off the first page very quickly.

Forgive me if there is something I have missed but just showing the last 10 posts doesn't work. I think I once read on here that there are over 400 members to this site. So showing only the last 10 posts is crazy.  There are times when I don't come on here everyday and I guess others are the same. I'm a member of a few forums, all non-stroke related, and their systems are the same as yours used to be i.e., a rolling queue of posts for all to see. If someone needs an urgent answer on the other forums I've been on, they can bounce the thread so someone sees it again. There doesn't seem to be that facility on here either.

We all make comments about the site and bring up very valid points on why parts of it are complicated for stroke survivors but sadly, no-one seems to listen to us.



Hi Brenda, let's hope your post is noted - by a moderator, or anyone else who may have influence over the design of this site. As long as they can locate your comment!! I have suggested they contact SSs and talk through the problems; the site is probably designed by clever, I.T. savvy people who have never seen it in action with a real, live group of SS. They need to see the struggles, which would enable them to design a more user-friendly format.

If we are trying to find an 'old' post, we might not know the title of the thread, so we haven't a hope in hell of finding it!  I've fallen foul of this several times ?, so once it drops off the first page it's gone forever.  I would be so upset if people got cheesed off with the site and drifted away to other sites, I've had so much help and support, as well as love and friendship from the wonderful folks on this site I'd be sorry to lose those contacts.  

Let's keep hoping that someone will take the bull by the horns, contact users of the site and get to grips with the issues that are regularly raised.

Have a good day ?  

Thank you for your feedback on the forum and sorry to hear of your frustrations with the layout.

If a conversation slips out of the most recent activity, it can be found within the forum thread itself - this can be found by using the 'Search Discussion' bar as found in the picture below. It might be useful to know, that you can always get easy access back to any discussion you've been part of by clicking on 'My discussions' on the forum homepage

Additionally regarding your profile, please go to 'My profile' then scroll all the way to the bottom and click 'edit profile', this will allow you to input whatever information you like about yourself, you can upload your photo write a bit about yourself and then press 'save'. Full instructions can be found on page 14 of the full user guide.

Please do get in touch with if you do have any further feedback.

Thank you for your reply. 

We don't tend to read through every thread so would encourage you to feedback any issues you have directly to so that we can ensure we capture it.

We are aware of some navigational issues on the site and it is on our roadmap to take a look at.

I totally agree with you Nic, yesterday I replied to a post of Colin's  and included a link to the NHS future plans for stroke patients which I know he and others would be interested in, but because there were so many posts on the page it disappeared and they probably haven't seen in. 

It seems that the site needs some upgrading and sooner rather than later.

Hope you and your husband are keeping well.



The moderator has replied, but still don't think they've quite 'got it'.  In order to find a 'lost' post and to follow a thread, you need to know the title/name of the thread.  It would be much easier to use a scroll back system, as we often have a rough idea of how long ago the post first appeared.  

There was an extended item this morning on the BBC news channel (I think) it featured a SS, a stroke specialist doctor, and a representative from the Stroke Association.  I was in the bank at the time and just noticed their TV, with hideous subtitles.  So I'm not sure of the breadth and depth of the programme, but at least Stroke had an airing!!

Husband seems to be shaking off the effects of chemo now, we're going to Bury St Edmunds for the w/end to visit a friend, and hope to visit the abbey gardens as the weather is looking bright and dry!!

Take care my lovely xxx


That's good news about your husband. Enjoy your weekend away. Lovely place too. Good weather forecast as well! 

Hi Ann - I didn't see it either. Would you be able to send me the link via private message? I would be interested in reading about it too. 


I'll have a look on the bbc iPlayer for the stroke item, it should be on there.

So pleased to hear your husband is doing ok, he'll be glad to be finished with chemo now. 
Have a good weekend away it will be good for you both.


Thank you for thinking of I dodnt see it and I am on this site quiye a lot !

It was on about 10 - 10.30 this morning.  It was probably the BBC news channel - good luck hope you find it!