I have been a member of this community since September 2018 when the forum was a truly welcoming space for people who had suffered a stroke. We were able to hear from those who had had a stroke, and were offered advice about anything that was troubling us without fear or anxiety. In November 2021 the stroke association became more involved with the forum and set up a new system which some, including myself, found difficult to navigate. This resulted in some really knowledgable users such as Colin and John Jeff ( does anyone remember them) not being able to contribute.
Fast forward to now and we now have the administrators asking users to flag up any posts they think are a bit controversial, yet it fails to allow members to flag their posts, the one about flagging is a prime example and Iām sure there will be others who are a bit disgusted at what you are asking stroke survivors to do.
Its a shame that we are being asked to essentially spy on each other and report us.
And that is how it comes across.
Being Friday and Admin off for the weekend.
Is this a warning in anticipation of some high jinx from us or something. It would be nice of Admin to show a few positives for a change, instead of sparking more negativity.
This is not Russia, China or North Korea. Its the UK and this is just a stroke forum.
For pitys sake
Hi Ann, I have been using this forum since 2017 and definitely remember Colin and John Jeff who were always very helpful and supportive. Itās such a shame that they are no longer able to contribute.
I think Iām coming at this from a different angle to everyone else but I was quite pleased to see that we can flag a post if someone appeared to be vulnerable or struggling with their situation.
I have read a few posts in recent years when people have described having no friends or family and seemed to be in a deep dark place. I have always felt quite concerned about not being able to help other than offer a few words of comfort and have often wondered whether these contributors have received any hands on support.
It is good to hear that the admin team would try to contact the person to offer some help and support if this was the case.
I understand where everyone else is coming from but just wanted to share my thoughts on this.
The opportunity for people to be able to flag posts and for there to be competent moderators seems important, but have seen that go too far at some sites. Also lack of moderation / response to flags can be a problem.
Seems this site is part of a U.K. public health agency, not sure how that works and what their moderation policy is?
Hi Sue, yes itās very sad that Colin and John Jeff arenāt on the site, it was very welcoming then and I can say hand on heart that I am eternally grateful for the help I received from them and others when stroke was relatively new to me, even though I had worked in the NHS for almost 35 years as a nurse and a cardiac physiologist I was in a state of disbelief when it happened.
If you read āwhat you can expect from a moderatorā it states that they are not trained to give advice or handle emergencies, but I would hope they can refer people on to someone who could help them.
The forum rules have changed a lot since we both joined, in fact we didnāt need moderators input, and to me they seem to be heavily loaded against the contributors, especially if they are a bit controversial.
Hope youāre keeping well and have had no further problems from the stroke
I agree with what everyone has said
I think post flagging should primarily be used for highlighting a post where the person posting looks as if they are struggling.
I do not agree that flagging a post is used as a form of spying which is what it feels that admin are asking in their post. Funnily enough we canāt flag that one
Thank you for the healthy discussions on the recent community update about flagged posts.
We wanted to clear up any confusion. The flagging feature is there to keep our community safe. Itās not intended to stop open discussions. We take every care to moderate conversations and part of this is also relying on you the community to let us know if you have any concerns.
We thought it would be helpful to share an update on flagging posts in response to conversations about the community moderating itself, and questions about what happens when a post is flagged. This recent update was about answering some of those questions.
We hope this clears things up.
Please continue to use the online community to give and receive peer support.
I was a keen user of the old stroke forum but not so much nowadays. I remember Colin and John. I now only communicate with one member from earlier and occasionally glance at the forum. Lilian
Hi Ann. I am keeping well thank you. How are you? I am now able to walk quite well with my rollator and with a walking stick with my husbandās help. I have help from a physio and belong to a gym for stroke survivors. Both of which I have to pay for. Love Lilian xxx
I too was a keen user of this forum four years ago ,and in its old format the contributors help me enormously . It was my prime source of support, then I couldnāt keep up with the changes and could not understand why good contributors faded away. Remember several folk posting why the changes ? And the difficulty grappling with the changes. I occasionally dip in to see if if can be of assistance. But itās just not the same.
I remember you, because I absolutely love your name. I am sorry you arenāt here more, unless you are finding no need of it.
I am not fond of the changes made, and those changes not made that probably should have been. It has been wonderful getting live, experienced help, and brings us so much closer to both a better life experience as well as to each other. The understanding and support by other visitors here has been tremendous for me.
I hope you will visit as often as you need for yourself, or to offer support, to tell what has helped you, what helps you now, share your goals and dreams or just say hello and how you are coming about.
Hi. What a lovely message. I am doing well but I lead a very busy life. I still read comments but sadly rarely make a contribution usually because I am too busy. Love Lilian xx
Hi Lilian, Iām keeping well thanks. I have some short term memory issues from the stroke especially if Iām tired but apart from that Iām ok. Itās good to see you back on the forum,
Hi Pds, i hope youāre keeping well. I would encourage you to come back to the forum, I know youāll have loads of advice to give. The system is more difficult to use now than it was a few years ago, but it gets easier the more you use it and there is always someone on here whoāll help you navigate it.
Im a less active member these days, was more so following my stroke in May '21.
Being an occasional user I havenāt really noticed any difference in my usage scenario. My need for support has greatly diminished and i hope my occasional posts are valuable to others.There has obviously been some change,and, going by comments, that some regard this as a backward move.
For my ten pence worth and with some experience of moderating forums in the past (other voluntary groups) I firmly believe flagging should done mainly in two scenarios.
1: Content is inappropriate/offensive/in breach of forum rules.
2: A members posts indicate a need for immediate support e.g. mental health or physical health issues, that the moderation team could pass to a relevant and trained person to review and intervene as appropriate.
Iām sure there are many other possibilities. We are a very open community here and most willingly share deeply personal experiences, some not so much which is absolutely fine. We all have lived experience of stroke from differing angles, all contributions have value as there is no āone size fits allā solution to our need.
