Lived Experience Forum

[RachSANECEO]

Lived Experience Australia renamed itself from Private Mental Health Consumers Alliance - so it represents / has roots in representing a part of the community but not all. Each state and territory has a consumer advocacy peak/network of varying sizes and importantly they are membership based. We await details on what the new National org will look like in terms of structure and governance. My view is that it should be strongly linked to /comprised of an alliance of the member based orgs so that it has strong grassroots connections. Hope that helps ?

[RachSANECEO]

What do people think about us creating a specific “space” in the forums for mental health reform? Somewhere you could contribute collective intelligence to help inform SANE policy positions?

[chibam]

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@RachSANECEO wrote:
Lived Experience Australia renamed itself from Private Mental Health Consumers Alliance - so it represents / has roots in representing a part of the community but not all. Each state and territory has a consumer advocacy peak/network of varying sizes and importantly they are membership based. We await details on what the new National org will look like in terms of structure and governance. My view is that it should be strongly linked to /comprised of an alliance of the member based orgs so that it has strong grassroots connections. Hope that helps ?

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So, Lived Experiance Australia are/were just representing the patients of private therapists? i.e. therapists you have to pay to see, as opposed to the ones you can see for free? Interesting.

Yes, I can see the problem there; and the need for a much broader representative organization.

Presumably, private patients don't include many of the people who've been sent to psych wards, ect. - especially those who've been sent there against their will. So yes, we certainly do need adequate representation for those poor victims.

But there might be a downside to that sort of 'all encompassing' representation, too.

I would worry about those sorts of graphic psych ward horror stories becoming the principal focus of such an organization, at the expense of addressing the less sensational stories of abuse/neglect/mistreatment that arise out of the small clinics. In many ways, that's very understandable: the worst-abused deserve the most urgent attention. But I would make the point that lives still get destroyed in small clinics, even if the tales doesn't sound as shocking as the ones that come out of psych wards.

In any event, I don't believe it needs to be either/or. I think we can clean up the psych ward nightmares, and the small clinic nightmares at the same time. I just requires an organization that is genuinely committed to addressing the system's misdeeds on both fronts, and upholds a standard of not getting tunnel vision about addressing only one particular area.

[chibam]

Tagging @Historylover @DogMan79 @Willy @Appleblossom @Bismuth @tyme @wellwellwellnez  @Basil   @hanami   @justanotherguy   to alert you that there's been more activity in this thread.

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@RachSANECEO wrote:
What do people think about us creating a specific “space” in the forums for mental health reform? Somewhere you could contribute collective intelligence to help inform SANE policy positions?

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I think this is a brilliant idea, @RachSANECEO !😀

I would reccommend that the delegates you tend to send to these sorts of government conferances & inquiries (and other major meetings pertinant to the running of the mental health system) should spend a fair amount of time in that forum, so that they can remain well up-to-speed about what the everyday community members have been saying about things.

[Willy]

@chibam  @Historylover @DogMan79 @Willy @Appleblossom @Bismuth @tyme @wellwellwellnez  @Basil   @hanami   @justanotherguy   @RachSANECEO
I have tried on many occasions to raise issues that I believe are highly relevant to this discussion and have beaten back so many times that I have more or less given up in disgust. Many of my posts never make it and some that do are so watered down as to be close to meaningless.

I truly wish it was otherwise but in spite of SANE's formal published position of supporting reform, it appears to me that there are a number of people in positions of authority who are quite opposed to the sort of changes that I and many other Australian's believe need to take place. Also, in my opinion, there seems to be a high level of ignorance about what is currently going on in both Australia and the world  in regards to mental health reform. 

Most of us members seem to "get it" but we seem to be surrounded by a wall of silence that doesn't want to know and certainly doesn't want to hear our points of view. Breaking down that wall will be a formidable challenge. I cannot see it being done from within the SANE forum/organisation.

I have attended some of these meetings referred. In my experience it is not as simple as just standing up and having your say. 

I can't say much more or this post will be blocked. Please use your imagination and trust that the situation will improve soon. 

Regards 
Willy

[wellwellwellnez]

I think @RachSANECEO , that having a space to discuss how to discuss hard discussions, could have really positive impacts on discourse, both in that space and to it's connected spaces.

It could be a, win win win, winner of an idea.

[chibam]

Hi @Willy . Sorry this subject has become so frustrating for you. I can sympathize. I get really wound up about this sort of stuff a lot myself. I can never figure out how much - in anything - we are accomplishing collectively, nor how much I am accomplishing myself. Sometimes there are announcements from on high that sound promising. But then I am routinely struck with the reality that nothing's ever gotten better in my own life; including there being no tangible indications of real help being forthcoming. Then I have to grapple with the dillemma of whether I'm just being selfish, or honorably realistic.

I must confess that I struggle to read between the lines of your cryptic post. I might be filling the gaps with my own biases. In any event, I won't push you for clarity, if it's going to get you into trouble.

What I can say is that I'm familiar with struggling against the boundaries of "what must be said, though it's forbidden to say." I've found ways of speaking many of these forbidden truths in (somewhat) public arenas, but I've always found that it's all for naught. When your speaking to people who've already decided that the forbidden truths are "wrongthink", even when you dare to speak them, you may shock them, but you'll never get them to question their existing preconceptions. Or at least, I've never been able to do that. Maybe the case just needs to be stated better.

I hope your right about things getting better soon. Though I've been hearing assurances to that effect for more then 20 years now. My optimism's run dry.

In any event, I hope your feeling at least a little better (i.e. less frustrated) today.🙂

[Willy]

Hi @chibam 

First let me assure you that you're efforts are worthwhile and you are making a difference. I believe we are also making slow but steady progress.

For a start you would recall the SANE audit that took place in November last year. After that audit I asked for a copy of the transcript which I eventually got after a lot of argy bargy and a complaint to the Sane CEO Rachel Green. At that time she tacitly gave me the OK to do a full review of the SANE forum which will be an extension of the audit that you took part in. I have just pulled out all that audit stuff and will post something soon to get the discussion going again. There are certainly things that need to be said and talked about. I suspect a few people are going to feel a bit uncomfortable with some of them but Rachel seems to be quite keen to hear things from the members point of view so it is going to be an interesting experience.

My frustration with the SANE forum as a means of advocating for mental health reform probably peaked around September or October last year. Apart from the problems and limitations about what we can say, I came to the conclusion that the SANE forum just doesn't have the necessary infrastructure or flexibility to effectively organise reform activities from. We could spend a lot of time and effort trying to get the SANE people to change but that sounds to me like an extremely difficult way to try and go about things with a high likelihood of failure.

I have been very busy with other advocacy work over the last few months. If you have a few minutes you might like to google "the pink panther movement mental health". Hopefully it will give you some idea of what has been going on behind the scenes and what input from yourself and others on this forum have already helped accomplish. Hopefully this will be the start of some proper mental health reform efforts in Australia. All I have seen happening so far from others is a lot of stuffing around.

I turn 75 this year. I am still chugging along reasonably well but with a lot less energy than I had in my younger days. Life for me has certainly been a rough ride at times but nevertheless an interesting one. I was dragged, kicking and screaming to Larundel psychiatric hospital in Bundoora Melbourne in 1971, more than 50 years ago. I spent several months there and was diagnosed with schizophrenia because I had started hearing voices and was naive enough to ask people who I thought could be trusted what it was all about. I came out of that place a complete and utter mess. If I knew then what I do today about mental health, things would have been a lot easier but in those days nobody knew much. Knowledge about mental health has increased dramatically over the last 30 years but most of it just hasn't filtered through yet into public awareness. That I believe is what mental health reform is predominantly about i.e. taking some of the excellent research and experiments from the last 30 years or so and using it to increase public knowledge and awareness.

In my experience perseverance is also very important. Those who eventually win are usually those who persevere. It is also important to realise that you can't win every battle. Nobody does. My impression of you is that you are an intelligent, capable person. Once you get a couple of wins under your belt I think you will quickly gain a lot of confidence.

This mental health reform stuff is something that desperately needs to be done. Thank you for your past support. I hope it will be ongoing because I would genuinely like to work with you on this reform project. I think you can help make a big difference to a lot of peoples lives including your own of course.

Regards
Willy

[RachSANECEO]

Hi @Willy 
We’ve made progress on the review front; plan is to put ethics in shortly and use a multi-stage process for a full co-design review of forums which will include:

A comprehensive survey with some paid incentives for the a portion of responses (not sure if first in or a draw yet- need to check with ethics); plus we will call for volunteers to be part of ongoing co-design group to review the survey outcomes and plan next steps. I’m hoping that group can participate in a sort of private group in the forums so we can discuss changes using this platform - and the delay has been working out if that’s possible and how/how long to build& cost. I’ll know more in the next couple of weeks.

Intention will be that these processes feed into a full refresh. There are a few forum members who have also sent in ideas and I’ve been reading through our feedback and complaints as well to get a sense of areas for improvement.

We have quietly just fixed a few things along the way too- and will shortly have a new “report a technical issue” form up on the forums so your technical knowledge and bug spotting goes strait to IT to fix.

Hope that gives an indication of work to come; budgeting for that codesign to begin soon and inform a development budget in FY24.

[RachSANECEO]

Thanks good suggestion. Do you mean two spaces?

- spaces for discussing harder things in terms of content that might usually breach the guidelines?
and
- space for discussing reform issues?

note as per my reply to @Willy  below there’s a big process coming soon to input to all of this.