Lived Experience Forum

[RachSANECEO]

Hiya @Zoe7 

these are great questions. 

current state of “draft survey” is a list of themes and possible questions that I’ve put together after reviewing past feedback and complaints and suggestions from members. They’ve definitely come from member feedback- next step I’m hoping will be form a group of forum members to look at the long list and help refine- ideally in a subgroup here in the forums but if not probably in some sort of similar online group space like we used for Audit. 

It’s a little bit chicken and egg but my aim is certainly that the survey gets really rich insights into what people want and then a member group reviews that and helps determine what happens next. 

actual process probably will be quite multi-tiered; but will stick to co-design principles (co-production is my goal). 

we will also get all this out via EDM as you suggest; I wasn’t quite ready to put it all out on the weekend but another thread referenced it (because we have shared with some of the members who have given feedback recently that we were planning to undertake a process) and since it was starting to filter into the forums I thought better to share with all at this point. Hope that makes sense? 

I also did post late last year about wanting to design a process and get member input but didn’t get a lot of responses. It’s a bit tricky to start these sorts of things when there hasn’t  been much structural codesign governance group formation in the past so we are sort of trying to create groups to govern the creation of groups to develop codesign surveys….!!! Hope that makes some kind of sense- 

can we count on you to be a codesigner? 

cheers

Rachel 

[Zoe7]

@RachSANECEO I was one of those that did respond late last year and had no response in return - so felt a little irrelevant and as if it was just another one of those times (that we have seen so many times before) when it was just talk. 

I remember also saying how much I liked that our CEO (you) was being part of the forums - that still stands and it is great to see you becoming more involved in this massive community. I also acknowledge it is hard to navigate your way around at first - one of the things that we can discuss in more detail through this process. Yes I would love to be involved. I have been involved in some of the 'projects' across the years but this one seems to be a bigger step forward ...and hopefully I can continue to advocate on behalf of our extensive membership.

[RachSANECEO]

Not irrelevant!
I’m just not as fast as I’d like.

My plan is that those who indicate in this thread they’d like to codesign, as well as those who put their hand up via EDM call out can form a group and develop/ review scope, process, survey questions etc and then stay part of the process

Community Guides obviously also key part of this but I would like as wide and open a call as possible to participate as I believe there have been times SANE has consulted CGs but not consulted wider membership and then people are unhappy about changes (new brand and website reskin being a particularly bad example) so I’m keen to make the process of designing the codesign to consider a redesign as clear and welcoming and open as possible!!

[Zoe7]

Absolutely @RachSANECEO I have been one of those CGs who has openly advocated for the wider membership to be consulted 👍 I am so happy that that has been taken on board and is going to be part of the ongoing process 😁

[Sophia1]

Hello @RachSANECEO 

I am a mere member who has a voice.

I did participate in the survey last year.

I have not seen evidence or received any notification of survey findings.

The issue that stands out to me for the majority of the time is that your information is posted on the forums.

The people who use the forums regularly and are well enough to know how to navigate them are the ones who are most likely to see these announcements.

Then there are members who can function around several posts some of the time and at other times are not thinking as clearly or are under too much stress.

My concern is that not all of us are on the forums every day of the week.

Many of us have to take time out to look after ourselves and or those we care for.

Many work.

Many are struggling finding work, homes, food and yes you know the rest.

Many find it hard enough replying to those notifications we have worked out how to receive finally let alone new posts.

Many have health conditions that do not make it easy for them to move around the forums finding all of the latest news.

I have also noticed the forums are finally inviting new members with more serious conditions who are starting to feel safe to be here.

Some contribute and move around, confused at times yet in many cases have found a place where they can connect with others.

They have an opportunity to feel valued.

Are they included in the group who have responded. Many might not have been on here.

Who is representing that group?

We have to be careful not to deter existing and future members from joining and yes staying.

There definitely needs to be far more monitoring of all threads at all times.

Will this be included in the new design?

I still can't work out how to do the new peer platform or whatever it is called.

We used to be able to read the questions and answers now they have disappeared.

I am a firm believer in change.

I want change for improvement for the majority not change for improvement for a section of users or

simply change for the sake of change.

So how is feedback from last year from a certain number of members who might not even still be members representing the broader group.

I still struggle navigating these forums part of that is due to my health and circumstances.

I regularly read where people have the same dilemma and are referred to one or two social threads.

Computer issues are becoming more frequent .

Emails sent get lost in a system

Replies around changing posts received from moderators come from sane forums which is extremely intimidating.

So how can change be effective when it is reliant on out of date feedback from a minority and the design is already outsourced for cost saving to an external company?

Then the end result of all of that is offered to those who find and see the survey to complete.

This is then tossed around with new teams.

I am not complaining.

I welcome the need for improvement.

The forum is oversized; outdated and not monitored as it is.

I just have grave concerns; agreeing with several of @Zoe7 points raised and more of my own

Will my single voice count though?

I too applaud you for taking the time to bravely face us including people who speak up like myself and often bring up subjects that do not want to be discussed.

I try to speak for everyone no matter their story.

Forever hopeful

Sophia1

[Zoe7]

Just lost a long response to you @Sophia1 😔

Will try again...

[Zoe7]

@Sophia1 I agree with all your points and concerns. We have such a wide and diverse membership and many of those members are not engaged daily in the site. Why is this - is it because it is hard to navigate, is it because it does not feel supportive or welcoming, is it that some people need instant connection that we cannot always satisfy, is it a place some find to unload and then walk away (and how can we make it easier for those people to connect with others whilst also maintaining safety on the site), ...so many questions.

There is also the level of (for want of a better term) 'wellness' and the place a poster is in at any given time. So many need support and I also do not feel the current structure is able to provide the level of support some need. Like you, there is more safety sticking to one thread and the handful of people you have connected with ...and you can come and go as you feel you are able to. We need to consider those just like you that have that safety in one place and being able to be present when you are able to as well as those that branch out more widely. It is a tricky balancing act but we need to make sure everyone is able to add their voice. How do we do this? A simple survey link posted on the forums is not enough but we also need to be careful that any correspondence from SANE through email is not triggering. There of course then needs to be a multitude of ways that this information can be relayed to the members. Not sure of the answer here but very much hearing that we need to connect with the majority whilst also considering their present overall position, as well as identifying and using past such surveys, threads related to the issues and comments about changes where no consultation was sought.

[tyme]

Dear all,

I'm once again flagging to see if anyone else is interested in participating this the Forums Co-design review. You can read from the beginning by clicking SANE FORUMS - CODESIGN MAJOR REVIEW 

This will be your chance to share what has/hasn't been working for you on the forums. As well as share what the forums would ideally look like, feel like and sound like, as well as other important aspects.

Thank you to all those who have already put their hand up. 

@Eve7 @Judi9877 @NatureLover @outlander @Hamsolo01 @Faith-and-Hope @wellwellwellnez @Snowie @Delicatessen 

@Oaktree - Not sure if you'd be interested (no pressure).

Please feel free to tag any others who may be interested.

[Dimity]

@tyme I can't commit to ongoing participation In the review process but i would appreciate updates from time to time, and the opportunity to comment. Others may also be interested so perhaps that could be factored into your communication strategy?

[Oaktree]

Hi @RachSANECEO @tyme 

I would love to be involved in this process.

Thanks for the tag.

Meggle