Hello everyone!

[Anna_Moderator]

Hi everyone

My name is Anna and I’m the Online Community Coordinator. My role is to support and help you as you use this space. If you have any queries and if it’s something I can’t help you with, I’ll point you in the right direction. Additionally, I help to facilitate the Online Activities, and since starting this position, I have been running some of these sessions. I’ve also been learning all about how the Online Community functions. As I’ve been navigating through, a real highlight for me has been to see the support that you all provide for each other. I’m excited to move forwards into this role further and I’m looking forward to getting to know you all. I’ll be more visible and you will start to see me engaging with you. I will also be posting some regular, lighthearted content so we can have a chat and connect with each other – keep an eye out for this, I’ll be posting them in them in the ‘Chat to Anna’ category.

In the meantime, if you need me for anything specific, please tag me and I’ll get back to you as soon as I can.

A few fun facts about me:

• I love ferns
• I hate cheese – I know, I know, I’m an odd one! If there are any other cheese haters out there, please drop by and support me!
• I’m scared of spiders I once threw my dinner across the room because a very large spider was crawling up my back!

You can read more about the rest of the team and how we moderate on our Meet the Team! page

I’m looking forward to chatting with you all over the coming weeks. Please drop by, say hey and if you would like to offer any fun facts about yourself, I’m all ears!

[Anna_Moderator]

Hey @MarkF66

Thanks for dropping by and the warm welcome

My hope is that we can all move forward in this space in a positive way and offer the peer support that is invaluable for people post stroke.

I look forward to seeing you around the forum and if you need anything please feel free to tag me

Anna

[Mrs5K]

Hi @Anna_Moderator Welcome & great to have you onboard. Look forward to getting to know more about you as time moves forward.

• Im afraid I love cheese…well some cheese. I don’t like blue cheese.
• I don’t mind spiders but really dislike flies and with my over sensitive hearing the buzzing noise they make is soooooo loud it sounds like a jumbo jet going past.

Oh and i’m a big fan of the Olympics

As others have said the support from this forum has been invaluable for all of us. Hearing from people who have lived experience really does help. To hear that others have experienced similar to you helps a lot in reducing anxiety levels.

Good luck in your role I hope you enjoy it.

Ann

[RedFraggle]

Great post @SimonInEdinburgh Agree it should be optional to make topics and comments public or private, identifiable or anonymous (at least towards each other). There is no rationale for exposing a vulnerable person’s own experience. Surely the Stroke Association’s duty of care to Stroke forum members, largely but not exclusively survivors, supersedes the promotion of our content on Google. Of all the safeguards whether on the forum or elsewhere this single improvement is PARAMOUNT.

A stroke and its impact cannot be underestimated. Honest, frank, sometimes humorous, banal or ‘off topic’ open discourse is absolutely right for building trust, recovery, coping and our emotional sanity. For many it is our link to the world beyond the confines of our present one. So the choice to speak either privately or anonymously demonstrates such bravery it should be applauded, encouraged and respected. A person went out of their way and made a contribution to help another survivor (or loved one or friend) whether to laugh, relax, cry, educate or motivate another human being. That’s gold. It’s the lifeblood of everything the Stroke Association is campaigning for.

However we have our limits. Access to research and researchers is absent. We are cut off and adrift yet we are a petri-dish of some willing specimens. Our experience can inform Stroke care, treatments and prevention. I certainly wish I had more knowledge. You think you are invincible until this happens. Some GPs barely impress the urgency or necessity of life saving medication or indeed Stroke prevention. We discuss things like that and seek ways to inform and shape research to pay it forward so that someone else young or older doesn’t have to suffer or receives better care and rehabilitation. I don’t know personally the outlet for that but the forum us also great for networking and idea generation. Life and work after Stroke is woefully lacking as an area of support. How would we know where to channel our good and bad experiences to policy makers and service designers and forum creators using the power of the Stroke Association? We are seen but are we really heard.

Our lived experience is not merely colour it is real world evidence and some of us have the interest, insight and time to participate in the wider conversation. For some it is now a vocation, and moderators need to be cognisant of that and balance intentions with critique. As @SimonInEdinburgh mentions, let the forum be the arbiters of decency. Indeed, consider forum members with the care, experience and a little digital literacy to be part of the moderation team. I think this would be hugely symbolic to the forum. We all had different lives and responsibilities before a Stroke turned up. Advocacy is now a badge we wear with pride. We all need to be focused on supporting each other to that end.

It is often the case that your biggest detractors will become your strongest advocates. @Anna_Moderator, @Nicola_Moderator, @Alex_Moderator, and anyone else I’ve missed.

Please support us and join the conversation

[Anna_Moderator]

Hey @SimonInEdinburgh

Thank you for this list, please see below everything I’ve addressed.

Like Limit

We’re happy to have a look at doing this for the community. This will need to be tested to check for any impact, but rest assured we’re going to look into this.

Stroke Group Network - online café support

With regards to the online café support we are currently reviewing the groups section within the online community platform and due to the Stroke Group Network sitting within a different team it would not be appropriate for me to comment on or get involved with whether they would add you to that.

Consultations

I’m unable to comment on any historic conversations around this but I can take this Nicola for an answer. I also think it’s important to let you know that whilst we do not invite the community to consult, we do take on board what the community is saying, which includes feedback that has been received, community conversations and forum data which can help us to shape our thinking around our decision making.

New Users

For new users coming onto the platform, we do have a responsibility to respect people’s privacy. For some people it can be quite daunting to come onto a platform like this, so we’d like to make sure they have the option to use the platform in a way that is comfortable for them. Having said that I’ve seen the welcome post which provides a lot of information. Would you and the others that put this together like to meet with me to discuss how we could use this on the platform? Please let me know if you’d like me to coordinate this.

Research

The research category sits with the research team. I believe the research team will be in contact with any members who had outstanding questions prior to the category being closed. However for the rest of the community I’d also like to say there are many ways in which you can get involved with research – you can find out more information on this by visiting this page Get involved in research | Stroke Association We’re happy for the community to discuss research topics however if you would like specific questions answering this needs to be directed to the research team not the online community team, I’ve put their email here for you research@stroke.org.uk.

Moderation

To help the community understand the moderator’s role we have included this in our T&Cs and the community rules. Whilst the decision of the moderators is final people can contact us through the service desk or follow the organisations complaint procedure if they are unhappy with this.

FAST

NHS England run the public-facing FAST campaign. It is not within our remit to make decisions on the organisations messaging and involvement. However, if you are unhappy with our messaging you can raise this through the complaints procedure, that way your concerns will be handed to the appropriate team for them to review.

Badges, users and stats

Could you help me to understand what about them being visible would make the communities experience better on the platform please? Once I know this then it’s something I could look into a little more.

Peer support rehab

I’d like to know more about this. Could you expand on this for me please, so I know what it is you’re asking?

I hope the above helps.

Anna

[EmeraldEyes]

Moderators come and moderators go, much like the rolling stone really. They come with their new broom sweeps clean, so full of promises and hope. And then they go, but we remain.

That makes me sound sceptical, and I suppose I am because the last one didn’t do a great job of it, just instilled a lot of disharmony before they left. And then we had those who tried to fix it at your end, all speaking of great changes to come, and all they brought was further chaos and disharmony. And now we have you.

@SimonInEdinburgh speaks out for many of us, though not all. Certainly he speaks for me, because he can put our points, issues and grievances across far better than I certainly could. Simon also speaks for me because it takes me so long to compile my posts at the best of times. And to compile what he has put together would leave me a lot less time to respond to the stroke survivors who need help. So Simon put together all our issues in those two post above on behalf of many forum members. Please don’t think for one moment that he’s a lone warrior. We just considered, in our wisdom, to speak with one voice rather than bombard you with many posts, in the hope you won’t go running for the hills.

So yes, there’s good reason to be sceptical. In the 3 years I’ve been here, Admin haven’t been able to even resolve the 2 simplest of issues, the “Like” limit and Anonymizing posts (which Simon has listed above), then what hope is there for any of the others.

The resolutions laid down for Bobbi’s grievances were rather convoluted and Simon’s grievances seem to have been brushed aside altogether, buried under a great deal of waffle without so much as an apology. Actions speak louder than words…pro-action that is.

I’m sure this is not what you were hoping for from this chat room today. I could have said a lot more but this much has already taken the best part of 2hrs to write. Already there’s been 2 other posters and your response in that time which I now haven’t time to read them. And that is time taken away from posts I’d much rather be responding to, where this time is needed most. But this needed to said and now I’ve said it, I’m off to my fitness session.
I really do wish you all the luck in this.

[RedFraggle]

Hi @Anna_Moderator thanks for your reply but I think you may have misunderstood what we are trying to achieve. The forum is notvas successful or helpful as it could be and little has been done to actually put actions in place to improve user engagement and address our concerns. @SimonInEdinburgh has been a real advocate for many stroke survivors and it is a shame he isn’t being heard.

[EmeraldEyes]

So that would be a NO then I take it…to everything!?
You know you could have simply just said NO, it would have spared your fingers from having to type it all out and would have spared our limit of spoons too not having to read so much, we might have been grateful for that.

Well, that was a fail!
Hey-ho its back to the corner I go.
Maybe the next one

[EmeraldEyes]

@SimonInEdinburgh

Getting the outreach to people to find us come along is the hard part -

I don’t know Simon, it might be easier than you think (I just asked a friend )
You would have it private with only a homepage visible to the public. You would include a notice that in order to view the forum, one must create an account. Google would see that Homepage and only be able to index that. (At least that’s my understanding of this.) And maybe you could have a sample post on the home page.

If I had come across that when I first searched for stroke forums, I would definitely have joined it just as I’d joined this one. Because it was exactly what I was looking for back then. I had absolutely no spoons to waste on confusing, bedazzling websites my brain just wouldn’t entertain. I just needed real people, who’d been through this or cared for someone going through it, that I could talk to about stroke recovery!

I hear where you are coming from for staying here. But I’m still in two minds about staying. A lot has happened recently for me and there’s still more to come. We stay for those who need our lived experience, especially for the newbies and I do it especially for the silent ones, as I call them, those who are only just managing to read a post. Because that was me 3½ years ago! I don’t “need” this forum for myself. The posts I read helped me and gave me hope and I’m giving forward in thanks for the help it was for me.

It’s bad enough when members go because their conditions have worsened; good if it’s because they’ve recovered sufficiently to get on with life or back to work etc. But when good members, who provide so much to this forum are leaving because we’re ignored by the very charity who’s supposed to support us, not even interested in our views for improvements on the forum. To be honest I can’t help feeling we are here to be used, taken advantage of for their own agenda. To be seen and not heard and ask for nothing. I’m neither an idiot nor gone soft in the head and they need to realise that. When members walk out they tend to take their donations with them.
And I don’t want to be the last woman standing!

[DeAnn]

Please wait an hour between posts? I have never seen such a thing before!

Not to be distracted, I must agree with @EmeraldEyes. Finding my posts on Google was bad enough, but the failu

[EmeraldEyes]

@SimonInEdinburgh

Since the stroke association pays people like Google for keyword ranking

Thankyou for that bit of enlightenment, so now I know who to blame for all my tears of frustration when I was searching for a forum to discuss my stroke. Yet another example of how they’ve taken full advantage of our condition. SA were always right there at the top of my google search lists. And if that wasn’t bad enough, using the word “forum” in my search brought up their UK Stroke Forum is the UK’s largest multidisciplinary conference for stroke care professionals. to the top of the list…because “onlinecommunity” wouldn’t even have been my last thought to ever search for.

@Anna_Moderator

Like Limit

We’re happy to have a look at doing this for the community. This will need to be tested to check for any impact, but rest assured we’re going to look into this.

But this is what really gets my goat, and tells me all I need to know. That and the Anonymity question you posed which was completely overlooked.
But the “Likes” increase, that’s not rocket science, there’s nothing to “test”, its just a matter of increasing the number by 10 or 20 for those at T3 level or whatever the number it is for the T4’s who never even use them anyway. That just shows me their couldn’t care less level for the members of this “online community” forum. That or they just don’t really know how to use the software…except where it suits.

I’ll give it a couple more weeks because Wattsy gets his test results on the 14th and I still have my fingers crossed for it being the helicobacter virus and that all he needs is a stronger antibiotic to shift it. That’s all that matters to me here, the stroke survivors, the rest just don’t want to know.

[EmeraldEyes]

Nope, certainly didn’t have the spoons to read through all that.
But I believe it’s the same too for this years I think. But that’s a tale to tell elsewhere.

[Anna_Moderator]

Hi @MarkF66

I’m sorry to hear you would like to close your account. If you still wish to do this please could you contact our Service desk and we will be able to do this for you. If you’re not aware we do have other options that we could give you instead if deleting your account.

Anna

[EmeraldEyes]

I just don’t understand this, you’ve got a Chat to Anna category.
Now I know Bobbi has created two posts.
CommunityAdmin have created one.
And you yourself have created this one.

And yet when I go to create one to chat with you, all I get when I hover the mouse over New Topic is this blocked symbol

And there’s this information symbol beside it stating ‘You’re not allowed to create topics in this category’

So then I tried to private message and even chat to warn it’s broken, and neither of them work either. So now I’m beginning to wonder if maybe I’m just broken.

Where’s the sense of community in that, its just raising a big red flag of distrust for me!

But what I really want to know is this.
Do the SA even believe we are real?
And do they even care?

[Nicola_Moderator]

Hi,
@EmeraldEyes Sorry for any confusion. It was not our intention to make people feel as though they are not real or ‘to raise a red flag of distrust’.
I’m sure you can imagine that keeping up with all of the conversations can be quite overwhelming, especially when being new on the forum. To help with this, I have temporarily stopped people posting new topics in this category and enabled slow mode. This original post was intended for Anna to introduce herself to the community and be visible. The conversations have taken a different turn and whilst we want you to continue the conversations and for Anna to have the opportunity to take part in them, we are aware that with the name of the post being ‘Hello everyone’ people may be coming to this thread and finding something a lot different to what they expected.
We hope that you will all bear with us and be reassured that Anna will be posting an update tomorrow to continue the conversations.

Many thanks
Nicola

[RedFraggle]

What a heart felt post and reminder of why I joined and how relieved I felt talking to and hearing from everyone here. It really is a shame that we have no say in the forum. The point of it should be multi-layered for newbies and those with longer years of recovery, otherwise people are stabbing around in the dark potentially for the same information and for us time and energy is precious. Oh it makes me so very disappointed this factor alone isn’t baked into the formula of the forum.

[EmeraldEyes]

“Trust is a fragile thing, so easily broken and not so effortlessly repaired.”
It’s hard to build any kind of trust on any forum for obvious reasons. But particularly on a Charity funded forum such as this one, who depend so much on donations. We have broken minds so have to tread that much more carefully than your average Joe.

On here, I’ve seen one change after another to the forum, though nothing that really benefits the user, the stroke survivors and carers of this community. But it always creates more confusion for the members. There one day gone the next.

The SA are a charity, I thought they cared for the cause they represent, I rather naively assumed they would care for the stroke survivors themselves. But I should have known better and taken my own advise to never assume.

You will always be on the outside looking in on us, then moving on. We will always be trapped inside a sound proof box battling our way out, fighting to be heard, until we die. It’s getting to feel like a zoo in here.

It’s no picnic being hobbled by your own mind, with a lot of survivors in a great deal of constant pain and suffering day and night without any reprieve.

The Like limit is not an issue, not like the Anonymity issue or all the others @SimonInEdinburgh has listed for us.
It was a test on trust,
on level of commitment to the community,
on level of caring…of giving a damn.
And the SA failed.

I normally save my spoons writing to the real survivors on here, because they really need us, they matter!

And all the while I’m grimacing at the time I’m wasting here in my reply. Time better spent with the stroke survivors. Because all I’m reading here are empty words and platitudes you can rattle off in a matter of minutes. Whereas it would take me an hour. Just this single post has taken me a couple hours. How many hours have @SimonInEdinburgh, @Nigel, @RedFraggle and the others sacrificed to compile their posts here. Meaningful, well thought out posts to discuss their causes and issues.

Trust can be earned with a bit of give and take on both sides, but so far all I’m seeing is bits and pieces of the forum being taken away, all methods of communication with Admin shut down, good members driven away in frustration; and what has been given is merely aesthetics and ornamental. The true assets to this forum are leaving one after the other because of all this. MarkF66, Nigel, Bobbi just in the past few days, and taking their valuable contributions with them, so much about CPSP that I couldn’t begin to understand.

I much prefer to give to a charity that not only takes but is seen to give back, so my money has gone elsewhere. And I’ve seen a lot of giving back within the Macmillan nurses, the Alzheimer’s society, Pancreatic Cancer UK, Manchester Blood Bikes, AgeUK. I’ve seen them all give so very much. What they do for their cause, for the people affected is phenomenal. And yet the SA ‘…will need to be tested to check for any impact, but rest assured we’re going to look into this’ before they use a few key stroke to increase the Likes limit for T3’s!
That’s bad.
That’s just embarrassing!
What hope does @SimonInEdinburgh and the rest of us have of ever really being heard on Research, CPSP in particular; on FAST; on Peer Support of Rehab; on Anonymizing posts even within the SA?

You should really read this post

Husband Suffered Stroke 4 Weeks Ago Due To BP Of 250 Massive Bleed On Brain

Hi All just wanted to give an update on Si as you’ve all be so kind with your advice and words of comfort. The other day I decided whilst I was visiting him to write “yes” and “no” on pieces of card. When I asked him a question, I asked him did he understand me, he pointed to “yes”!!! Ever since we have been using them as have the medical staff, we have found out he has been in pain at times, I asked him if he understood and knew what had happened to him, he pointed to “no”, I asked “do you want…

This is what matters and this is just another example of what the SA should be involved in because hospital staff should really establish a patient’s lucidity and alternative forms of communication for stroke patients unable to speak instead of just leaving them to suffer and misdiagnosing as a result. The SA could be a part of that, seeing to that getting done. I know this is not your area but I’m sure you might pass it on.

[RedFraggle]

Oh bless you @SimonInEdinburgh for taking up the mantle once again. @Anna_Moderator @Nicola_Moderator what is the appropriate chain to put in a formal complaint as this has been going on long enough. The forum isn’t working as a vehicle for many of our dedicated stroke survivors. I think it has gone beyond a petty argument. We need listening, action, change and commitment from the Stroke Association. The purpose of the forum is to help people like us and the current architecture and flow of comms and content could be so much better. Is it too much to ask?

Happy to discuss offline.

Andrea

[EmeraldEyes]

Sorry Simon, I wrote it out in notepad then posted here with the intention of getting the correct tag names. Then couldn’t edit here when realised my mistake

[Anna_Moderator]

Hi everyone

Thank you for your contributions.

As mentioned in a previous post, the Online Community is for peer support. Some of the conversations are taking people away from being able to offer and receive the peer support that the community relies on. Therefore, I am going to close this thread.

I can assure you that you have been listened to. On this occasion I will take away everything you have raised. I may not at this point be able to give you a response, but please be reassured that your feedback will be taken away and reviewed by the team. If we make changes in response to this feedback, we will communicate this to all members of the community.

We have provided a way for you to give feedback. Please use this process if you would like to provide any further feedback or expand on what you have written by completing the feedback form.

If you have concerns about the Stroke Associations operation or its staff, you can follow our standard complaints procedure or alternatively you can call 0300 3300 740 to speak to our Supporter Relations team.

Kind regards,

Anna