My Stroke Guide is changing

We’re making some more changes to My Stroke Guide to improve the experience for you, our online community. We want to make it easier for you to find information and support.

You will start to notice a few things that look different but we will make sure that we involve you in the process.

You can read about what’s changing and why on our blog here.

We also welcome your feedback in the comments below.


I’m interested in where these changes might take us.
The My Stroke Guide forum has been a big part of my life since leaving hospital.
It has been a place where I could tell my story as it happened and where I could get sympathy, support and encouragement.
So in many ways I’m a bit apprehensive about what this promised change might mean.

I have met staff as well as other folk affected by stroke and had a good experience.
Change for the sake of change is not always the same as improvement.
I must trust the Stroke Association and its staff to keep this thing that I value so much in good order.

I hope to be around for a good while yet,
I have made progress but have a long way to go.
I am keen to be sure the My Stroke Guide forum will continue to be of service to both myself and those individuals who unfortunately will one day find their way here looking for some sense in what is happening in their life.

It is remarkable to meet others equally keen to work together for mutual benefit.

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


Ill second all @Bobbi comments.

I know that this is the announcement to say we will consult you. It seems a little late or perhaps just clumsily missed saying what needs to be said? Shouldn’t this idea have been floated? in the lounge for example & been part of the study on your website and branding study, Even/ Perhaps / Maybe?

I can see why you want to change it. I have always said it was a strategic mistake to have a website called my stroke guide and a forum called my stroke guide and for them to be on different domain name to - would only have taken a Cname record !- also a really hard question to answer is whether using discourse was & continues to be a good idea. It’s off the shelf and it’s powerful. Powerful equals hard to master. Attwood & co have done a really good job of building a platform that supports incremental familiarisation, plugins, trust levels, gamified incentives, but it’s still more a tool of the developer community than the user community. I couldn’t speculate on the impact of changing it either way.

I can see why from a corporate perspective you’d want to consolidate - We the users are the community here. knowledge of which is spreading. The emerging asset isn’t the stroke associations It’s the communities. (Personally I’ve never found the website has any stickiness, it’s not of much use compared with the richness that is returned across the whole internet by Search engines particularly Google scholar - but the forum is) I migrated from different strokes and I will migrate again if the magic spark is extinguished or dwindles DS are about to put something together they’re not the only ones. I know a number of initiatives that might make havens to fly to.

I would suspect that maybe there are fundraising angles in the SA motives?. So corporate forces may be irresistible.

The strength of this forum - in fact the only way in which it generates momentum is from critical mass -that’s in the participants. Last time you changed the forum you lost a number of key people some of who I presume you automatically promoted into admin positions here and never have taken up the duties that go with the privilege.

By saying it’s gonna change and not what the consultation process is, how to engage, nor the time scales, nor what stays the same - you’ve introduced all the prospect of loss and none of the vision of gain for the people who actually make it something that you value and we value.

First should be involvement, painting a picture of the future with value, allowing stakeholders to scent mark ideas so they have ‘buy-in and skin in the game’. That would have built advocates, champions, you’re most active constituents the ones who are the first to comment & will probably go on being the most active commentators have nothing positive to say only questions and we all now have the natural psychology that fear of loss is hugely stronger than prospect of gain - a la tversky and kahneman

It would be good to share how to get involved in shaping our future. The one thing you can rely on absolutely is that enforced change dictated by others is totally alienating


Thank you for your comments both. I’m not sure if you’ve had a read of the blog mentioned but I can say the forum is going nowhere and the plan is to continually improve it.
This is not enforced change @SimonInEdinburgh, it is built on the participation of the stroke survivor community over a number of years. Including the work done last year that led to this piece of work so although this announcement might feel like it’s come out of nowhere and could appear unsettling, it is a long journey we’re on to continually improve the experience and access to information and support for many more people affected by stroke.
The use of an open source platform has freed us up to improve the engagement on the forum as we spent way too much time in the past trying to fix things with a limited in-house developer resource. We have seen the benefits of this over the past two years as conversations like this, signing up using Google so you don’t have to remember passwords and the self-help articles wouldn’t have happened.

The purpose of this thread is to provide a platform to ask questions including “how can we get involved?” or “what does this change mean for me?” So we can address those.
Hope this helps but feel free to post your questions and we’ll compile the responses.


I would just like to say that I totally agree with Bobbi on this one. This forum has also played a big part in my life since my stroke in February 2017. It has enabled me to vent my feelings, sad or angry. Also in celebrating achievements, big or small, knowing that the people reading my posts completely understand where I am coming from.
In turn I hope that I have been helpful to other stroke survivors in the past too. I’m a bit concerned about change as I remember a time a few years ago when My Stroke Guide underwent a major overhaul and many of the contributors, who were regulars when I first joined disappeared. Obviously this could have been for many different reasons :thinking: but I know from some of the comments at the time, that many were struggling with the new site. This said, I know that we all have to move with the times. Please be gentle with us
Regards Sue


Absolutely Sue, This piece of work is really around the brand connecting well with the Stroke Association so you won’t notice any difference in the way the forum itself works. There are thousands of people who visit our website but don’t know about My Stroke Guide or the forum so that’s why we’re trying to make it easier to find.
The last change was painful but was needed as the old platform was almost impossible to keep updated from a technical point and the default login kept a lot of people out as they didn’t know what they were signing up for. This shouldn’t be anything like that experience.



I want to thank you for putting this note into the forum, to make us all aware, and your perhaps the messenger not the originator of the need for a message per se.

I think Bobby and Sue have alluded to the idea that “continuous improvement” may not be the correct goal. While great greater availability might be. Moving from an in-house written to an open software platform has clear advantages for cost of ownership considerations, whether the people that left would agree that they had benefits for participation in the user population is something to be balanced. That however is water under the bridge but the lessons that carried value should be heeded :slight_smile:

Yes I read the blog piece before replying!. I noted the phrases like " we decided " - imposed change m’thinks but that’s not the point. The point is one of perception. Suggesting a change in an environment that people are emotionally and cognitively invested in is as Machiavelli said…

It ought to be remembered that there is nothing more difficult to take in hand, more perilous to conduct, or more uncertain in its success, than to take the lead in the introduction of a new order of things. Because the innovator has for enemies all those who

Facts matter far less than perception

When you use a phrase “could appear unsettling” you’ve missed that point - it is unsettling has unsettled. That could have been prevented with a few of the steps that would have been good management of change. It can be ameliorated now.

You note yourself towards the end of your reply some questions that are obvious. It would be helpful to have the answers to them - or better yet answer the first and leave the second to be evolved and created communally

You’ve said the forums “going nowhere”. So you’re going to convert the whole of the site to follow discourses UI/UX? You’re going to move to …!?

I’m interested in the terms of service for the sites -which I previously reported as unavailable ( because the link goes to an unresolveable address). I’d like to see if the terms of service I agree to stated the purpose of using the forum included publishing our comments for the purpose of improving attendance on your website (My original enquiry was because I wanted to see whether the collected thoughts here could be used as the basis of proven therapies and research) I know a de facto condition is that comments made can be found with a search engine. I think it would be a moot point whether the two are equivalent . I would think the SA would have to seek everybody’s approval to use their comments contributed for one purpose if they were then going to be made available for further purposes otherwise you break GDPRs “for explicit purpose” and "for minimum purposes” principles

There appears to be some topics that do need airing



I can see the sense in making the brand more cohesive. Putting it all in one place should help people find everything easier & hopefully in turn this forum will benefit from more users who can offer their advice & support to everyone. Stregth in numbers as they say.

If the forum’s going nowhere that makes me very happy :grin: it’s certainly a valuable tool as far as I am concerned.

I don’t understand all the technical stuff and don’t need to. I just have an interest from a user perspective. If any changes are going to be made that require us to do something different then a guide on how to do this, in advance would be beneficial.




Aye, I was one of people last year, I think, who participated in several Zoom meetings with the team leading the changes. They were interesting discussions. I’m sure the changes will be fairly unobtrusive to our participation on the forum.


And the reason folk can’t find their way here is because you have the forum hidden under too many layers. I really don’t mean to be sarcastic here, but you’ve got to admit, it’s not rocket science, just put the title Forum in big bold letters, in an active link right at the top of every Stroke web page either beside or under the search bar where everyone can find it. And from the forum, folk can easily find their way or be guided to the My Stroke Guide from there.

Anyone familiar with forums, knows how and where to find them. And yet, when I searched on google for a forum after my stroke; when I finally managed to key in just 3 words “stroke forum uk”, this is what I got at the top of my search results for my efforts:

When you click on the first result, you get this :point_down:which just confuses you more than you already are.

Thankfully, now that you’ve altered the layout here, when I click on the third option I can clearly see it’s a forum (so no need to post a sample picture). But in the search result it’s still confusing…is it a guide or forum, who knows until you click on it.

On the Stroke Association website, there is not hint of a forum in sight! How is a anyone meant to find it? The option “My Stroke Guide” doesn’t tell me there’s a forum there, just more online reading material you now haven’t the energy to trawl through!

This forum doesn’t even show up on the first page of SA search results!

But should you happen to select that “My Stroke Guide”, at least you will find the first hint that a forum does indeed exist here :face_with_spiral_eyes: :woozy_face: :exploding_head:

Is it really so hard to understand why people don’t know about the forum?


I wish I could like a post more than once!!
:purple_heart: :heart: :purple_heart: :purple_heart: :heart: :purple_heart: :purple_heart: :heart::purple_heart: :purple_heart: :heart: :purple_heart:
That’s a dozen

I didn’t ever subjected my journey through the stroke association website doing the same analysis you have @EmeraldEyes but I’ve been in IT & change a long time and it took me ages to find & engage w/ this forum.

I did originally find the previous one - I think - I do remember that I didn’t bother using it cuz i found it offputting. I joined different strokes and redit & a discord & and several other Facebook groups.

I still don’t find the stroke association website a resorce that I ever use for the same navigational reasons. For example I put the support groups info on here because the way it was structured on the website was so unoptimized for ease of use - in fact my wife and I run one and half of those groups and we don’t know how to get those pages amended!

I do know it has a lot of financial help information on the website and I can appreciate that it must be great help to those who need it and can find it so I guess that’s the same for other categories of information that it contains?

Adding information to any site isn’t of value - its retrieval that is where there is a value


Thank you for your response. We already know why people find it hard and that’s why we are making these changes. Sticking a big forum button on the website is one way of doing things but My Stroke Guide isn’t just the forum, it’s also the health information, video and blogs as well as aphasia-friendly content. As the website also serves health professionals, supporters and other audiences, making these changes can’t be done in isolation.
Your last screenshot shows a change that was made not long ago by myself which is why I mentioned the continuous improvements we make. Even the link to the forum in the menu is a recent change. These are all the things we do regularly based on the data we get from the current forum, analytics from both sides, speaking to people like Rups and Bobbi as well as many other sources.
There has in fact been more work done to improve journeys within My Stroke Guide than there has on the website which is why you will find it difficult to find your way around the main site.
However, as the site receives much more traffic than My Stroke Guide we need to make sure it integrates better with the site.
A lot of work is taking place on the main website to fix the problems you’ve highlighted of which the changes to My Stroke Guide will form a small but important part.


Oh I hear you on all that and agree with you. I was merely giving the answer to that one statement you made: But I do love the forum the way it is now, you’ve done a good job. It sounds like you have your work cut out for you merging it all under one umbrella and I wish you luck with that :smile:


By the way. Those rather nice mugs.

At the top of this thread.

Do we all get one?



Thank you Simon :blush: But it’s not a journey I wish to repeat :sweat_smile:
I wasn’t’ subjecting my journey through the Stroke Association’ per se. When I was originally searching the internet, I was actually looking for any forums where people were discussing their strokes, preferably in the UK. And I’m stubborn and persistent!

I was no where near ready, fit or able to use a computer but needs must! It really was my only means to get the answers I sought because I felt so trapped inside my head. I was having to use my non dominant left hand because the right was useless, I had Aphasia, no speech plus fighting with the fatigue and short term memory issues. So to spell out just one word 5 letters long was a mammoth task let alone 2 words. I was looking for forums where people might have been discussing strokes. I’ve always found forums to been a good place to research things so they’ve always been my first port of call.

So to type out those two letters, I’d tap out a letter then have to drag my eyes, along with your brain lagging behind, up to the screen and allow them to find and settle on the target search box to check you’ve hit the right letter. Yep, sight tracking was off too :crazy_face: then drag it all back down again to reset your aim onto the next letter on the keyboard to tap out and then check that it’s right and so it went on…and it could take several attempts to get it right. I’d aim to at least get the two words typed out, maybe even hit enter, before I’d go and rest for an hour…and hope I’d remember to go back to it later :sweat_smile: So naturally I quickly dismissed the SA. I needed to find a site I could at least click on and start scrolling and reading through posts.

I eventually found my answers elsewhere and at least it was a useful rehab/brain training exercise :wink: :grin:

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Greetings - I am new to this - 8 weeks since my wife had a stroke, registered for knowledge and support - to date no one has contacted me locally, no one from the association has approached my wife or me in hospital (Bristol did on day one).

I have read up on the stroke, have read what others are dealing with, but so far have not found out about those that support the stroke survivor, so perhaps changes made will address that, perhaps just me?

I wish you well.


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You’re above post is in itself background information of the “you’re not alone” type for some new stroke survivors.

I didn’t suffer to your degree thankfully :hugs: , but like you I wasn’t looking for the stroke association I was looking for stroke information . Who gave it/gives it is irrelevant. I just look at the window of my phone in front of me that combines all the disparate services into a stream .

In my case I was looking because the provision by anybody on the ward started & ended with “I can’t say everybody’s different” - they could care for the fact that I couldn’t get to the bathroom but they could not care for the need that I couldn’t get to a place of comprehension and any vision of what came next

Ironic that medical support of a neurological condition concentrates on the physical.

Ive further found all organisations see themselves as bounded by their footprint for fundraising that is still geographically based whereas the desire for information from their consumers is bounded only by language.

Realistically the overwhelming delivery channel by volume & instances has to be mobile phones and tablets and possibly in this case also on the ward at the point of admission / discharge- then that’s signposting for example by QR codes. It certainly isn’t by snowing survivors and families with paper. These are all drivers for what evolving solutions look like.

I suspect that Clement has been given a pm role because of his technical prowess and the needs of the organisation are a sociological solution to evolving problem in societal norms about the access to information. in this case caused by trauma and where at least a chunk of it is still transitioning across the research boundary so isn’t even familiar to those who have the role of practitioners in therapies. Eg how many times do we come across “you only recovering in the first 6 months?”

The whole discipline of sociology is a poor cousin to psychology, that’s before we move into the area of digital society of which we must be a community who’s emergent norms will in the future be recognised as a representative subtype. We can see that our needs are not met by Facebook or LinkedIn or similar algorithmically driven captive advertising pools. I asked previously and again above about terms of service because I wonder how long it will be before the stroke association decides that algorithmically driven AI analysis of our posts may generate saleable data. I suspect whether they’ve identified such a revenue stream consciously or not yet it will eventually move into their consciousness (if I haven’t just put it there!)

So it seemed to me to be two or more drivers far below the surface of “my stroke guide is changing.” There’s going to be constant societal evolution changing the norms of: service consumption - in this case information and sharing of digital community, and service provision which is always going to have a cost of operations that needs to be recouped - and perhaps we’re coming to the end of one model without the emergence of alternatives being economically, ethically and legislatively clear yet

That’s a little different from the question of “how do you announce the change and involve the community”. I suggest there are ways to do that that would have been less clumsy than the path that has been followed so far (and Clement is just the visible face, the one not to shoot! :slight_smile: )