@chibam,
@Zoe7,@Appleblossom, @wellwellwellnez, @FloatingFeather, @hanami , @moxi , @tyme,
@Jynx , @Gwynn , @Shaz
Please note that the Sane Forum would not allow me to post this as a single post. Please also see Part 2.
I have been asked to start a new thread for this discussion. In any case the old thread was becoming so convoluted it was difficult to figure out who was connecting with who.
This thread follows on from my original post not that long ago which was mostly about my report of the “Our Reform” conference held in Melbourne on the September 6th 2022 at the Pullman Hotel in Albert Park Melbourne. I hope I have @ copied everybody who was previously involved in this discussion or who I think may have some interest in it. Please pass this on to anyone else you think may be interested.
Link To My Original Post
Chibam said : In response to your original post of several days ago, I think that, far more important than simply writing disjointed, arbitrary letters to MPs, we need our community to really start to visibly contribute to the public inquiries that are held in these matters.
Last year, there was a somewhat scaled-down federal government inquiry into the mental health system. Despite all the modern hoopla we hear about "bringing more lived experience voices in to the mental health conversation", the submissions made to that inquiry were overwhelmingly from therapists. There were only a handful of submissions from patients - and that's even if you make the best possible assumptions about the hidden submissions.
The hundreds of therapist submissions were largely bemoaning the fact that the government throws more money at "clinical" therapists, as opposed to "non-clinical" ones; while the "non-clinical" therapists were proclaiming that they deserve more money then "non-clinical" therapists because they are better.
Interestingly, one point that kept cropping up was that the "non-clinical" therapists felt betrayed, because the therapist union is almost entirely lead by "clinical" therapists; and thus, the union's official advice to government tends to recommend great favours be extended to the "clinical" therapists, while the "non-clinical" ones generally get treated like crap. Most of the "non-clinical" therapists disputing the patronising stance of their union did so anonymously; no doubt because there would've been harsh consequences if the elders of the industry could identify their in-house critics. That tells you a lot about the culture.
I think there's a lesson to be learned in that for us patients, in trusting so-called representative organisations to speak accurately and fairly to the government on our behalf. They may not end up speaking for the patient community, but rather for just a narrow caste within the patient community who make up said organisations' leadership ranks.
All the more reason why each and every one of us needs to speak out for ourselves.
Getting back to my original point about the abundance of therapist contributions, and that limited number of patient contributions to the inquiry; you can guess how the inquiry turned out. The therapists' repeated concerns about poor funding for "non-clinical" therapists was addressed as one of the inquiry's major final conclusions, whereas the concerns voiced by patients barely got a mention at all.
We weren't listened to, because we never even turned up.
You make the point that it would be difficult for an MP to get away with ignoring 50,000 like-minded letters. But how would the media even be expected to know that they had gotten so many such letters. I don't know if there's any legal requirement for politicians to publish reports on how many letters they receive, and/or the general subject matter of such letters.
By contrast, these sorts of inquiries are usually public; as are the bulk of submissions they receive (except when a submitter requests their submissions to not be published). If an inquiry refused to acknowledge or address 80% of the submissions it received, that would be a very public spectacle, and much more likely to produce an outcry. Public submissions also offer us an elevated chance to be able to communicate past the politicians and directly to the general public. Although virtually no members of the general public will ever read the submissions to such inquiries, at least our testimony is out there in the public sphere, which I guess is better then nothing.
My Response
After some reflection, I agree with chibam’s comment regarding my previous suggestions about writing to MP’s. I concede that it is unlikely to have any worthwhile impact.
I also share chibam’s lack of confidence in some of the so called community based representative organisations that I have looked at.
Concerns about so called “Lived Experience” representation
My first concern about lived experience representation came when I read the Royal Commission Report into Victoria's Mental Health System (2021) (Ref 1). According to this report there was around 12,500 contributions from individuals and organisations but only 40 statements from people living with mental health issues which included family members and carers. This is hardly a balanced representation.
In my opinion, the Royal Commission enquiry also failed to identify the underlying issues responsible for our mental health services problem. This failure was rationalised on the basis that attempting to do so would cast blame on people which would serve no purpose. Laudable as this may sound, it enabled the commission to skirt around the key issues and produce a list of problems without any insight into what caused them. Despite this failure. It seems to have been generally agreed by all that the the report is a damning statement of mental health services in Victoria. It also seems highly likely that very similar conditions exist throughout Australia.
My second concern arose after I attended the Our Reform conference about a month ago. I have no figures on how many of the people who attended that conference had genuine lived mental health experience but the conference appeared to me to be mostly attended by people from government and various community organisations. One person I spoke to told me that many years ago he had been picked up by the police after smoking marijuana. He was taken to a psychiatric hospital where he spent the night. That was the limit of his lived experience which then apparently led to his employment in the mental health field. I suspect that this sort of thing is not uncommon.
My third concern follows a recent discussion with the CEO of the Victorian Mental Illness Awareness Council (VMIAC), Craig Wallace. The VMIAC present themselves as a consumer advocacy organisation. While their ideas and attitudes seem quite noble, there are some things about these types of organisations that trouble me.
The conversation that I had with Wallace was about the two very different faces presented at the Our Reform conference as detailed in my earlier post (see link). He mentioned that there were a number of different community groups with conflicting agendas all vying for consumer representation. He also mentioned a problem of the influence of “powerful vested interests” and the need to step very carefully. He seemed surprised when I mentioned to him that I thought the underlying problem was a deep seated cultural issue. I will say more about this in a bit. Another concern I have with all these reform organisations is that they are government funded and obviously spend a lot of time and effort keeping up appearances so as to continue to attract government funding. I suspect that there is not a lot left in the reserve for achieving their organisational objectives. I imagine that they also have to be very careful of what they say out of fear of losing their government funding if they say something out of place.
My fourth concern evolved after reading a published research article by some people from Melbourne University that Wallace directed me to (Ref 2). This article amongst other things claims that extensive “tokenism” takes place in selecting people to provide shared experience information to various government committees etc with a view that is favourable to what that committee has already decided they want to hear. What they obviously want is somebody with lived experience to help them ratify their already established agenda.
I was personally approached a few months ago to do exactly that in return for payment. I declined the offer.
Chibam said:
I think that part of the problem is that there's no doubt a large gap between the official textbook definition of "psychosis", and what the average person on the street is likely to call "psychotic" behaviour.
Regarding the prejudice against people with psychosis... It's a complicated issue, because there are two sides to the story. Yes, people with psychosis understandably want their freedom and to be treated well and respectfully. But non-psychosis people want to feel not only safe, but also connected to their community; they want their neighbourhoods to be their home. The more you flood those places with incomprehensible alien mindsets, the less and less of a home they will have.
There is also a level of compassion for the victims of (apparently rare) psychotic assault, and a yearning to view such tragedies as lessons that have been hard learned, and which action will be taken to insure they don't happen again.
I can't help but think of the story of a certain famous actress - I'll call her Cauley Cerrette ( 😉). She got attacked and injured by a psychotic homeless guy, for no reason, several years ago. Fortunately for her, a cop just happened to be in the vicinity and detained the guy before he could do too much damage to Cauley.
She hailed him (the cop) as her personal hero and sung his praises all over the internet.
A couple years later, the same hero cop, walking the same beat, got ambushed by the same psychotic homeless guy. This time, the cop got messed up really bad.
As you can imagine, Cauley Cerrette was outraged. Why hadn't the lesson been learned? Why hadn't anyone taken notice that this guy was a menace to society, when he had clearly demonstrated himself as such? Why hadn't steps been taken to insure he couldn't harm any more innocents? A good cop lay in hospital, seriously injured, as a result of the failure to learn those very basic lessons. But instead, a tunnel-vision focus upon appeasing the minority of people with psychosis has left that community with a revolving-door system that turned the guy loose in a jiffy.
You can understand the anguish from people who care about that cop. "What can we do to insure this never happens again?" They fairly cry out.
Is our answer to be: "Sorry, there's nothing that can be done. The contentment of psychotic people is most important. Your literal safety, and sense of safety is secondary. You just have to politely tolerate the fact that your community now has a mildly elevated risk of harbouring a potentially dangerous person."?
I'm not suggesting it's fair for the entire psychotic community to have to pay for the misdeeds of a slim minority, such as the man mentioned above. Certainly, the vast majority of them are harmless. I'm just saying that the concerns of so-called regular people are not unreasonable, and shouldn't be lightly dismissed as irrelevant, or baseless.
Community Concerns About Safety And Community Treatment Orders
I see the story of the actress and her psychotic assailant as a fairly typical media beat up. My understanding is that this incident took place in the US but much the same sort of thing can and does occur in Australia. Chibam pointed out that while there appears to be no significant basis for claiming that people diagnosed with psychotic illness are any more likely to be violent or present a greater danger to the community than anyone else, it is a complicated story and many mental health services providers as well as members of the public appear to believe otherwise. I would suggest that this belief is driven by fear and ignorance, not logic.
It is has sometimes been claimed that the media are responsible for these sensationalist and erroneous views. Maybe this is true to some extent but there is also evidence that pharmaceutical companies have undertaken substantial public relations initiatives to distort the facts and promote the view that unless people with psychotic mental illnesses are taking anti psychotic medication (that they of course sell) they are a significant danger to the public. In all likelihood, this is probably what has caused the overuse and abuse of medication including ITO’s (Involuntary Treatment Orders) by Australian government mental health authorities. (Ref 3,4)
The reality is that people with mental illness and intellectual disabilities typically fare worse than ordinary criminals under the justice system. Despite this provable fact, there will undoubtedly be an outcry from some sectors of the community at any prospect of change just as there is when any suppressed minority strives for or is granted more freedom or rights.
This is just one of the hurdles that has to be overcome through the logical argument that public ignorance is no reason to subject a minority group to untold misery and distress without any significant community gain.
This is probably also one of the main reasons for the often stated claim that there is no political will for change.
Please see Mental Health Reform - Call For Action - Part 2
