Make the most of this community?

I just wanted to flag, that despite the trauma that most posters on here have sustained, that there are a number of posters which would welcome the chance to improve what the site/SA offers stroke survivors.

It’s clear from the replies given that these are a real help and allow posters to get information which isn’t easily available elsewhere. Posters can engage in a way the medical community cannot.

It feels that there is a hugely knowledgeable section of posters/resource on here that would love to help the current community and those that will arrive here in the future. It seems hugely under used and possibly not even considered as a knowledge base.

To give some examples,

  • The SA does not survey posters to see what help is most in need ? There are no polls or questionnaires to discover the significant issues.
  • What research subjects would the community most like to be investigated ?
  • What are the major issues in recovery ?
  • What issues would the community most like the SA to campaign on ?
  • How could the site be improved to make finding information simpler and easier ?
  • Could the SA engage experts on different elements of recovery and present via monthly zoom calls ?
  • Develop a simple one page fact sheet for new arrivals containing answers to the most commonly asked questions based on posts here ?
  • Develop similar documents for specific elements of stroke ?
  • Survey users on visibility of posts via other applications ?
  • Survey users on how they feel about the SA?

This community knows so much, have lived the unfortunate outcomes of a stroke, have knowledge no one will find in a text book but it seems hopelessly under utilised in shaping the SA and what that experience could provide to survivors.

What can you do to engage and improve ? Can the SA be more outward looking to its community ?

I would hope that this would be left open for others to comment.

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I was hoping Bobbi that further posts would relate to the subject raised ie what can be done to maximise the value of this community for all of us and people who will tread this same path in the future.

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I applaud both your posts here @Nigelglos - I’m in full support of what your opening message proposes (as a starter to further discussion :slight_smile: )

I’m interested in helping others in ways that go beyond just stating what is my journey. That has a place - hardly the be all and end all of the forum though!

Nicola has had responsibility for the forum for only a short time. We will achieve more with her than on our own but we should achieve things whichever route we have to or are able to go.

It’s important but not urgent so encourage others to share on topic thoughts and see where we go :slight_smile:

You’ve got a reasonable starter.
Does the welcome post meets one of the needs you’ve listed? Nicola’s boss Charlotte suggested long ago but it should be included in the joining process when people sign up - to the best of my knowledge that hasn’t happened yet maybe it will in the not too distant future :slight_smile:

Caio
Simon

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As I have said before I would like a “safe” place to be able to openly discuss the things I have experienced with others that may have made it past those struggles and can come up with useful suggestions without exposing my medical history or any very personal problems to the world wide web.

A place I can feel comfortable to say what I think without worrying about the world of trolls or the eyes of the world. I understand that keeping this open to the public does increase potential footfall however I learned about this group from the stroke association emails and not a web search. I did not look into it after my first stroke as I didnt really want to face or admit I really had a stroke but not I could find it invaluable if I felt it was safe.

I also believe you lose any footfall that you gain by leaving it open when someone finds out all there words and emotions are out in the open for anyone to see. Self preservation jumps into immediate affect.

I suggest polling the members to get their opinions as we are the ones here and we should be able to determine if we can have a safe space without unknowingly exposing ourselves to the world.

Just my 2 pence.

Let the forum grow naturally and be safe. the more you gain and keep the bigger it becomes and the more info you anonymize as was previously suggested the more useful the site becomes for real life experiences and knowledge.

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The very fact that we are on this forum means we still have minds capable of rational thought and decision making, many able to return to work.
I do sometimes wonder at peoples perception of strokes. Our minds have been damaged, not diseased as with Dementia, Alzheimer’s. Our brains are still capable of repairing, adapting, neurons finding new pathways or compensating.
We are not “senile”, to be condescendingly led by the hand, to be seen and not heard, so please don’t treat us that way.

We are a living mine field of information regarding stroke on here that no one, that we are aware of, is tapping into…other than fellow stroke survivors. Or are the stroke charities and medical experts afraid of how much would have to be rewritten, reprinted, re-educated and the cost of it all. Do the SA even make any good use this forum other than maybe directing newbies to it? I just find it so strange that the very charity who profess to ‘support everyone touched by stroke’, ‘campaign for the rights of stroke survivors of all ages’ ignore this gem of a forum full of stroke survivors.

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I would like to ask everyone what they get from this forum.

I have had strokes. I was already aware of stroke symptoms and stroke prevention suggestions when I found this forum. I have never been diabetic, I have rarely imbibed in alcohol in my lifetime, I have had high blood pressure and been overweight, but both were reversed, the second through hard work, the first through medication, exercise and diet. I have been a smoker. What I was not aware of, was a heart problem caused by bacteria entering my bloodstream, likely due to a congenital heart defect. I already had strokes when I came here. I already had the most up to date information about symptoms and prevention, but no information about how to navigate life after stroke. I have received so much information, even though I am not based in the UK, due to the forum of other ‘stroked’ individuals. Information about exercises, tools, patience, anxiety/depression, available options for UK help that encourage me to look for and find US help… What I get from the forum is encouragement, support and hope. I can’t get that from an informational page, although they also are necessary. This forum is awesome, but what makes it so, is the people willing to share their stories, their thoughts, their hopes. I wish personal comments were not able to be searched publicly. That does bother me. I have never met anyone here in person and unfortunately, I likely will not. I don’t mind sharing my personal thoughts with others in this manner, nor in online meetings, but I do have a problem with people who are not members being able to see conversations within the forum. Perhaps it could be designed to show official articles publicly but not personal topics?

@Bobbi…I’m not sure I understand what you are saying. I understand the point of not focusing on a trauma that is past, or making it the focus of your attention. I agree that is not helpful. However, I find addressing a trauma is what it takes to overcome it. I can’t ignore it away, as it keeps reminding me. I can’t pretend it didn’t happen, nor hide the after affects. I am not fine how I am, anymore than I have ever been. I must continue to grow and learn for my entire life. Without doing the work of recovering some former abilities, I am stuck in solitary confinement for life. That is not acceptable to me. I need to relearn some, make adjustments on others, and accept a few. But discontinuing the work is not an option for me.

One more commentary…I would like to be seen and heard. I often feel I am just molly coddled or ignored completely…in public, in the health care system, in my neighborhood and even in my home, at times. I would like to see this forum also be used to give voice to those of us with lived experience.

BTW I found a site I really like for their actions and missions. The SA is listed as a member.

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Great words DeAnn,

But, I must point out a few things. You never know, I was born in Dallas and moved to the UK 23 years ago so we could have met albeit very unlikely.

You are not in solitary confinement. You are here and have a door into our shared world. An exclusive club of survivors and warriors who handle our own challenges in so many different ways and not all work for others and some work for all.

The most important fact, here you are seen and you are heard with open eyes and open arms and everything you bring to the table is welcome.

I am still in the early stages of my second stroke that seemed to have taken my brain from a neatly stacked set of blocks like Jenga and not only toppled them but threw them around the room and I value each and every post and am very happy to read and think about your posts and hope in my heart that the things read and posts made here can in some way help another to fight on with hope.

Thank you for your words DeAnn.

Best regards,
Jeff

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Thank you for that. This is the one place I actually feel accepted and supported. As well as with a couple of my doctors and past therapists who listen and pull for me. The therapists are now past tense and all but one of the doctors will be soon as well. I won’t be giving up on this group of people, no matter what I need to do to keep in touch with them.

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I love that folk come to this forum and report their struggles and their successes.

The Stroke Association and their online community have been very supportive over the three years I have been visiting here. For this I am grateful and and hope that some of my rambling scribblings are helpful and encouraging to others treading this path.

What I have read here has been inspiring, encouraging and a spur to keep trying. I also believe that sharing our own experiences can be useful to others.

We are treading a well worn path. Leaving markers and signposts acts as a reminder that we are not alone and there is a tomorrow.

I promise that on that future day you will discover that little by little your ability and your outlook have improved. You may have further to go but you have made progress.

Of course there are twists and turns, ups and downs. They are all a part of the story, things become clearer as time goes by.

We start in the dark at the bottom of a very deep hole. From here things can only get better. Don’t give up, it is worth the effort. We can achieve so much.

keep on keepin’ on
:writing_hand: :smiley: :+1:

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Great words DeAnn :clap: Very interesting reading.
Regards Sue

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I have been reminded of this post I made last year…

it’s still relevant for me and the current thread says parts of it may be relevant for other people too

We all discovered we have needs that are not met as well as they could be (or at all :frowning: ) and some of us therefore find purpose in improving the breadth and depth & communication of information and services and how they are delivered in way that connects for others…

In one respect it’s altruistic in another it’s it’s selfishly having a purpose all be it if that is selfless

One of the factors in this thread is that the organisations that claim to represented us - I have found - are actually the blockers rather than willing assistants & and listening facilitators.

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I felt I wanted to :heart: every post here. You all have valid opinions, motivations, and it all comes from a good intentioned place, as far as I can work out online. We have such different ranges of reasons for being here, with all that stroke encompasses. There are so many things we cannot influence, but above all this should be a safe space where anyone who wants to can voice what they need to, safely, in a world where they potentially feel they have been robbed of the ability to be heard or seen by anyone who really understands.
Nothing more constructive to add, which I realise is not the point of this thread, but just wanted to express how this space is important and to thank those who regularly contribute.

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@Nicola_Moderator

Hi Nicola
Would you be able to give us your thoughts on these posts ?

In your post
“Since my appointment in January, we have been exploring ways to develop our community engagement so that we have a safe, supportive, and vibrant community for all. This work has been in response to feedback, research, and collating forum data.”

Would it have been more inclusive to bring the forum members with you and share those findings, validate the way forward ? Share what those changes are before they are made ? Add a poll/s to see if everyone agrees with the changes ?
One of the items that you will see in the post is about the lack of engagement.

The challenge I would pose
Is this the stroke associations forum where it’s use is entirely dictated to posters by a group with little or no visibility (experience of stroke ?) or a true collaboration between the posters and the SA ?

It seems incredible to me that your work was not more visible and that direct feedback wasn’t sort.
It gives the impression, no matter how unfair that may be, that the SA is aloof and remote. That the people posting perhaps don’t have valid opinions so we don’t need to fully engage. Is this some form of disability bias ?

“We will start to apply what we have learnt, and throughout July post a series of updates to advise you of any changes that will affect your experience on the forum.”

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Julia, you hit the nail right on the head. We want and need a “Safe space” to put our true feelings and emotions out there and to get feedback that is and has been experienced by other members of our shared community. It is a major point of this thread and i would love for everyone to comment their thoughts. “The Good, The Bad and The Ugly” thoughts and opinions.

Best regards,
Jeff

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Hi all,

I acknowledge the many conversations and apologise for the long response. There’s been quite a lot to unpack on this thread.

I think we all agree that the online community is a space for peer support that is provided by you through your own lived experience and that interactions between community members and staff play a key role in peoples experiences, and I support your keenness to have an open conversation about this. However, having staff engaging in these types of conversations does not fit the purpose of providing peer support or our roles on the platform.

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.

In response to the views about the forum being open to the public. This decision was made during the Autumn 2021 site upgrade. Until then, all content including the forum, was only visible to people who logged in. Research and feedback at the time showed that the login was a significant barrier to people finding and joining the platform which was previously My Stroke Guide. The decision was therefore taken to remove this barrier and make all My Stroke Guide content available to view outside of a login. This included posts on the forum. Whilst not directly comparable due to the amount of content that is available to people without having to join. We have seen an increase in activity on the forum compared to the old site.

I’d also like to point out that making posts and usernames visible to people without logging on is practiced by other health forums such as Macmillan Cancer Support, Scope and Headway. Although people are able to read posts, they still have to login to contribute to conversations.

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. Rather than being reactive with responses, because you want immediate answers. I would like to be given the opportunity to take the time to listen to and process what you are saying so that I can have a more responsive approach.

It would be really helpful to receive feedback in a way that I can collate, review and monitor trends in a fair way. I am open to having direct dialogue with individuals to gather feedback in a way that works for you. To help me to achieve this, I ask that you submit your feedback by using the correct process. For those of you that aren’t aware, you can locate the feedback form in the left sidebar under ‘more’.

Finally, I want you to know that I am aware that there is a need for further engagement and collaboration between staff and community members. The changes that I mentioned in my previous post will be a starting point for this and I ask that you bear with me. You may be dissatisfied that you did not have direct input. However, I can assure you that some of the changes have been in response to what we are hearing from conversations within the community, and this will be communicated when we update you on what they are.

I hope the above is somewhat helpful.

I won’t be joining in any further conversations within this thread and hope you can understand the reason for this decision. If you have a direct question for me or the team please reach out through the service desk.

Many thanks for your time.

Nicola

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Noting that @Nicola_Moderator Will not be replying to this thread I still hope you / she will note that discourse provides a mechanism for logged in members to post anonymously.

it is not turned on in the forum

Previously when we have asked for simple changes we have received either no response or “that cannot be done” for reasons that do not stack up

It seems a simple win - win to me

Caio
Simon

Ps I have seen plausible arguments that discuss the suggestion there is more forum use by making the posts visible - it would be good if those with that opinion share it here so the impression that I am the only one with something to say is dispelled

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What a fantastic post. I totally agree with the contents.
-------------------
I appreciate that not everyone on the forum desires change, perhaps has been so damaged that they are not capable of promoting it. For those of us that can and want to make this the best forum/encyclopedia/knowledge base, we need the SA to be open and collaborating. What is there to lose ?
There is no catch, don’t we all just simply want to help ?

The reality is, many of us know more about our individual strokes than any member of the SA can possibly do. It’s the nature of having had one. How can a health professional know what a sensation is like if they have experienced it.

Work with us SA for the benefit of those already here and those to arrive here in the future ?

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We donate the time, understanding, empathy… that powers an asset the stroke association promote as one of their more high quality and relevant services.

What really upsets me is the our posts are randomly asserted to be off topic and deleted and there is absolutely no way we can get even a hearing about how unfair it is

How can discussion of the stroke associations goals A and B and stroke associations guiding values that they publish on the website be off topic in a forum where the community is entirely devoted to recovering from strokes and supporting other people in recovery from stroke.

To say I’m angry as well as upset is to understand my emotions - which I have to process with a post stroke brain I expect other members here will understand that I don’t expect the administration to though

:frowning:

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I’m in my third year of using this forum and being a part of this community.

I am grateful for the space it has offered me, grateful to have met others, like me, working through the results of this life changing event.

In many ways it is water under the bridge, but what has become clearer, over time, is that there is a future with a life that offers somewhere to be and a place to go.

I have steadily continued to write here about my experiences and I want to stress that I write to share what my life has become, I definitely don’t want it all bundled up and filed away, to be hidden from view. What I write is alive, I am alive.

So please do not shut down what is written here. It is not for a select few, it is for everybody. It is not private, it is for you. I wrote it in the knowledge that you would read it.

To answer a question I was once asked, ‘Who is the you you refer to?’.

That ‘you’ is all who have read here, are reading here, will read here and hopefully will keep alive the spirit of this place. There is a generosity here that we share and that encourages us to move forward. It is life affirming and good for us all.

This is a new morning, a new day. Let us go forward, without fear, with hope.

Some of us write, some of us read, we share our humanity.

It serves us well to avoid trying to fix what is not broken.

keep on keepin’ on
:writing_hand: :smiley: :+1:

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