Lived Experience Forum

[Gwynn]

And that's what I was saying - if there is the data saying that 'if you get X side effect, this medicine will, in fact, make you sicker before it will ever help you', you can make better decisions about whether to continue on that medication.

The data can also have a protective effect for patients - in that if there is a 'black spot' hospital where everyone keeps dying, maybe the health professionals there aren't doing the Hippocratic thing?

Data can help create accountability and measure competence.

[chibam]

@TideisTurning wrote:

I can see how much thought and consideration you've given this @chibam. One thing that really stands out for me from what you've said is a system that is person-centred. A system which listens to the people it supports to ensure the support received is in line with what they want for themselves, rather than having 'ideal' outcomes dictated by someone else, where that may not be in line with what the individual wants. What a great vision! 

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I have heard that phrase, "person centered" used to describe the ambitions for the system reform numerous times, @TideisTurning . I had hopes that meant we were on the right track towards a much better system.

But from what I've been reading here, it seems as if we are drifting very much in the opposite direction.☹️

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@Historylover wrote:

@Gwynn. I'm more on the side of patients than therapists. They can come up with all sorts of 'treatments, medications etc., and have been doing so for a very long time, but the mounting MH crisis is more the result of ineffectual treatments and lack of  accountability than lack of finances, accessibility or algorithms...

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Very true; which leads me back to my original point about how this is all flowing in to the election spin (although it is a much more permanent problem). The various parties and advocacy groups touting how much extra money the government is spending on mental health; or how much money some other party would spend were it in power. Either way, it draws the entire conversation into revolving around money, and perpetuates the mindset that the heart of our mental health system woes is - and has always been - a lack of funding.

I can't speak for everyone, of course, but just based off my own experiance, that is a complete load of rubbish. Between my family and the government, we gave the mental health system over $10,000 to fix my life (and that's not including the services of the psychiatrist I saw for 9 months, who's services were billed directly to Medicare!); and absolutely nothing was accomplished! They didn't even try to make things any better! It was just one enormous scam!

Meanwhile, most people are able to get the sort of assistance I needed for free from friends, relatives and coworkers; it only takes a few minutes/hours - days at most - of their time, and it makes a lifetime of differance for the person being helped.

So when I hear all these announcements about untold billions of extra money being poured in to the mental health system, I can't help but wonder what on earth they hope to accomplish, when $10,000 in just my case alone ($10,000 x 25million Australians = $250 billion dollars - to do nothing) couldn't accomplish a damned thing.

I wish they'd stop talking about lack of money and pouring more money in to the system; and instead start talking about how the truckloads of money they were already pouring in to the system could be better spent to produce actual results. Because $10,000 to accomplish nothing is beyond rediculous.

Don't tell me you are going to throw even more money into my treatment. Tell me what you are doing to insure that money - (ideally, it should only cost a fraction of it) - would be spent today to produce some recognizable improvement in my life.

[chibam]

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@Gwynn wrote:
And that's what I was saying - if there is the data saying that 'if you get X side effect, this medicine will, in fact, make you sicker before it will ever help you', you can make better decisions about whether to continue on that medication.

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But again, @Gwynn , the essential question is: Who decides what side effects are bad? Who decides what decisions are "better"?

Case in point: When I was in treatment, I was perscribed a certain drug because I was depressed about being single (among other life problems). Unbeknownst to me, significant weight gain was a well-known side effect of this medication. The therapist didn't need any computer algorythm to tell him I was going to get fat from taking this stuff - he and his whole profession knew very well that this was a common side-effect of this drug! And let me tell you, if you have trouble getting set up with elligible single girls when you are in the relatively normal weight range, you have bugger all chance of it happening when you become pudgy and unattractive!

But the therapist made the judgement call that side-effect was a price he was willing to see me pay, in order to get the results he wanted. He even commented several times that he was pleased with the progression of my treatment, even if I was immensely concerned about how things were going.

The exact same dynamic played out with my other therapist, albeit not pertaining to medication. But the treatment was all about her getting the results she wanted, not what I wanted.

Why on earth would anybody with a conscience want to empower these sorts of monsters with computers that can refine their ability to manipulate poor, naieve victims?

[Historylover]

I don't know @Gwynn. If they were really trying to amend the situation, why hasn't it happened before this? How long do they give themselves to actually fix this situation and not just go through the motions? Words account for very little, only results count.

Doctors are supposed to already know about the medications they are prescribing. Or are they just practising?

Are we saying that there has been no 'data' before? Or are we saying that they just haven't been paying attention?

[hanami]

Hey @chibam 

It's heartbreaking to read through your posts. So much wrong has been done by you. I just want to validate your feelings and know that we are here for you. 

Just checking also, do you speak with Blueknot? They are an amazing resource and support for people living with trauma. I'll link here to their website and contact details.  

Sending care and support

hanami 💮

[chibam]

Thank you for your kind words, @hanami 🙂

I know it probably seems like I'm stuck in the past, ranting on the way I am about things that happened many, many years ago. But the truth is, I'm stuck in the present; I'm holding out for the help I sought all those years ago and am still finding is nowhere to be found. I only refer to my past ordeals to highlight the scope of the problem as it was then, and as I get the distinct feeling it remains today.

I truly loathe having to inflict my depressing story on others; it is so contrary to the positive presence I yearn to be. But often I feel that it is the only meaningful tool I have to help achieve the changes that need to be made.

So, to answer your question: no, I've never contacted the BlueKnot Foundation directly (although I believe I've chatted with some of it's staff on here), because I wouldn't say I'm really traumatized. A little wisened to the risks of trusting "professionals", perhaps, but I don't believe that's the same thing.

I'm very ready and eager to forget the past and move on to a brighter future. The problem is, there aren't any open routes there.

[Gwynn]

I don't have all the answers - but I do still hope that Big Data will be helpful to patients rather than harmful. If you're really interested in what's actually planned to be done with the money, contact the person that Chibam mentioned in their first post.

I think that @chibam's utopia of having the system help you find meaning and worth in your life is something you're far more likely to find with a mental health occupational therapist than any other kind of MH professional, though.

[hanami]

Morning @chibam 

I'm hearing you! 🤗

hanami 💮

[chibam]

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@Gwynn wrote:
I think that @chibam's utopia of having the system help you find meaning and worth in your life is something you're far more likely to find with a mental health occupational therapist than any other kind of MH professional, though.

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So occupational therapists are the ones that actually assign unemployed people/inappropriately employed people their jobs? I'm sure I've asked this question before and received contradictory answers to it.

I get the impression that you think there's something far-fetched about a mental health system that actually helps people with their real-life crisises? But the truth is that most people get this sort of help from their acquaintances anyway. It's only a small proportion of the population that don't know anybody helpful who have to wallow permanently in these conditions. So, all we really need from the mental health system is for patients to be able to hire these sorts of friends, when they don't have any themselves. It would really be very simple to accomplish, and would be immensely plausable. The most difficult part would be insuring integrity in the system (which, BTW, we don't even have now); but I'm sure there would be measures that could be taken to make it relatively strong.

[hanami]

Hey @chibam 

I used to work in community mental health and sat next to a mental health OT and this description here pretty much sums up what they used to do with the people they supported. So even though the title says 'occupational' the role is actually not job/employment related.

hanami💮