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Advocating for change

Mental Health Reform - Call For Action - Part 2

Mental Health Reform - Call For Action - Part 2

....Continued from Part 1

The Underlying Problem - Ignorance and False Beliefs about Mental Health

I believe that the underlying problem with our mental health services is ignorance, which in turn is based on fear. I suggest that this ignorance has evolved in part because of the deliberate cultivation of false beliefs by vested interest groups over at least the last 70 years. This ignorance does not just apply to the general public. I believe it is deeply seated within the mental health community throughout the world. I further contend that any attempt at reform without first dealing with this issue is akin to moving the deck chairs around on the Titanic

Chibam mentions the gap between the textbook version of psychosis and what the average man in the street sees as psychotic behaviour. I would consider this to be an understatement.

The way that the biomedical model of mental health and specifically the current view of psychosis has evolved since the discovery of a commonly known, now generic drug, that I am not allowed to mention on this forum, in the 1950’s. This is an intriguing study of the way in which vested interests can push their agenda’s and influence the world with little or no evidence to support their claims. This drug was first viewed as a tranquilliser and a medical or pharmaceutical solution to many if not all mental health problems. As time went on this drug and its derivatives magically acquired “amazing” new powers which had more to do with creative marketing than any science, undoubtedly helped by billions of dollars spent by the drug companies on advertising and infomercials targeting medical and psychiatric practitioners and consumers wherever it was legal to do so.

Little by little these drugs morphed into the disease-specific drugs that are claimed to work by “balancing the chemicals found naturally in the brain” (Eli Lilly, 2011). This has led to the idea that mental illness is a number of discreet and specific brain diseases all caused by chemical imbalances which can be cured or at least managed by the appropriate medical treatment. When looked at critically, this view is such a joke that it is seems unbelievable that people ever accepted it as “true” but that is exactly what has happened. (Ref 5)

During the last couple of decades there has been a lot of significant new insights into mental health based on evidence from extensive research. Most textbooks however remain outdated with information that today is considered incorrect by the vast majority of researchers. This is due to the promotion of and prevalent belief that the biomedical model of mental health is the correct and valid one. Unless something happens to change these deep seated beliefs (and the text books) , they will have significant impact on training, treatment and mental health services well into the future. (Ref 6 ,7)

The other textbooks that have come under critical review are the manuals used to diagnose mental illness. The two main ones are the Diagnostic and Statistical Manual of Mental Disorders (DSM) and the International Classification of Diseases (ICD). DSM5-TR is the current and probably the most frequently quoted manual. It has come under intense criticism.

A comprehensive study, by researchers from the University of Liverpool in the UK , involved a detailed analysis of five key chapters of DSM, on ‘schizophrenia’, ‘bipolar disorder’, ‘depressive disorders’, ‘anxiety disorders’ and ‘trauma-related disorders (Ref 😎 .

Lead researcher Dr Kate Allsopp, University of Liverpool, said: “Although diagnostic labels create the illusion of an explanation they are scientifically meaningless and can create stigma and prejudice. I hope these findings will encourage mental health professionals to think beyond diagnoses and consider other explanations of mental distress, such as trauma and other adverse life experiences.”

Professor Peter Kinderman, University of Liverpool, said: “This study provides yet more evidence that the biomedical diagnostic approach in psychiatry is not fit for purpose. Diagnoses frequently and uncritically reported as ‘real illnesses’ are in fact made on the basis of internally inconsistent, confused and contradictory patterns of largely arbitrary criteria. The diagnostic system wrongly assumes that all distress results from disorder, and relies heavily on subjective judgements about what is normal.”

Professor John Read, University of East London, said: “Perhaps it is time we stopped pretending that medical-sounding labels contribute anything to our understanding of the complex causes of human distress or of what kind of help we need when distressed.”

Allen Frances, MD was the chairman of the group that created the DSM-4 manual. If anyone could be expected to understand the problems and limitations of the DSM approach, you would expect it to be him. Writing in the Annals of Internal Medicine journal he had, among other criticisms. this to say. (Ref 9)

"Drug companies take marketing advantage of the loose DSM definitions by promoting the misleading idea that everyday life problems are actually un-diagnosed psychiatric illness caused by a chemical imbalance and requiring a solution in pill form."

Despite widespread criticism and evidence against its use, the mental health diagnostic system and manuals continue to be used world wide. They form the predominant basis for understanding and treating mental health by both medical practitioners and government services. This approach is commonly referred to as the Biomedical model.

The drug companies and psychiatric fraternity did not take the criticism of their precious and lucrative system kindly. Here is just one example of how they attempted to counter it.

Around 2006, concerns started being raised about neuroleptics, otherwise known as anti psychotics, having a negative impact on the life expectancy of users . Shortly after, Finnish investigators concluded that neuroleptics actually increased the life expectancy of people diagnosed with schizophrenia. These investigators led by Jari Tiihonen have published a number of studies with claims to that effect. Tiihonen has admitted that he has ties with numerous pharmaceutical companies and manufacturers of anti-psychotics as a consultant.

These Finnish research efforts soon led to headlines like the following appearing in pop science publications.

“Use of Antipsychotic Drugs Improves Life Expectancy for Individuals with Schizophrenia”

Evidence from multiple sources indicates the opposite to be true and there is substantial evidence that the research process was seriously flawed. (Ref 10)

Today the “official” view about the affect of anti-psychotics on mortality is that it is a “controversial” subject. This view is not based on research but on which side has the most money and influence to generate media headlines. It is often possible to draw invalid headline conclusions from obscure academic reports. (Ref 11 a typical example). Most people read headlines, not research reports.

It is no secret that since the introduction of The Unmentionable Drug in the 1950’s, pharmaceutical companies have spent billions of dollars “educating” both consumers and mental health professionals.

By contrast all new genuine mental health research is published almost exclusively in academic journals which are difficult to read and often difficult to even get hold of if you don't have academic connections to a university. It is also interesting that a lot of the research seems to have come out of the UK where the drug companies probably have less financial and political leverage over the universities than they do elsewhere such as in the US. There has also been some credible mental health research from some Australian universities.

For the last few months I have been talking to people online around the world with mental health issues ranging from trivial to very serious.

The majority appear to believe that mental illness is a brain disease that needs to be diagnosed and treated with drugs. The discussions on the online forums that I visit is inevitably about medication diagnosis and symptoms together with a fair bit of venting and frustration. Even those who have had experience with psychological therapies and claim that it has helped them still seem to be firmly attached to these beliefs. I have found very little interest from most people in even talking about alternative views of mental health. Most seem unable to conceive of any other explanation or approach.

Most of these people that I have been talking to are quite young. They are typically under 30 and have grown up with the biomedical model. Many, but not all of them are Americans where consumer advertising of psychiatric medication is legal and inevitably supports this view. My experience of talking to older Australians with a significant amount of lived experience has been somewhat more positive in recognising the limitations and problems of this current approach. (Ref 12)

A Proposed Solution

Tackling deep seated beliefs like those just mentioned is not a trivial job. People tend to hold on tenaciously to their beliefs.

At the moment people are running around talking about new legislation and spending public money on more or new facilities. While better facilities and resources would undoubtedly be worthwhile and welcome they cost money and are subject to budget constraints. Given the economic state of Australia and the world at the moment it is difficult to see a lot happening in the near future.

My more immediate concern is the new legislation proposals. From what I have seen so far, these efforts appear to mostly be going around in circles. I would suggest that one of the main reasons for this is that a lot of the thinking seems to be based on the flawed foundation of the Biomedical model of mental health. As far as I can see, all this will produce is an even bigger mess than the one we currently have.

The World Health Organisation (WHO) support the BioPsychoSocial model of mental health which is substantially more accommodating of the reforms that I believe many of us are looking for. (Ref 13,14)

Unfortunately these reforms seem likely to be aggressively opposed by vested interests including some influential individuals within government mental health authorities. (Ref 15,16)

As chibam suggested, we need a group of people with lived experience who are willing to stand up and be counted. What I am envisaging at the moment is a lean and keen group who can easily communicate with each other, probably through social media, and judiciously make use of media, legal and political means to try and achieve the reforms that we all seem to want.

There is a lot more that can and needs to be said about all this but I think this is enough for the time being.

Perhaps a “show of hands” from interested parties would be a good next step.

Regards

Willy

References

1. Royal Commission into Victoria’s Mental Health system. Final Report. Summary and recommendations. ISBN 978-1-925789-63-8 (Print) Published February 2021

2. Daya I, Hamilton B, Roper C. Authentic Engagement :A conceptual model for welcoming diverse and challenging consumer and survivor views in mental health research policy and practice. International Journal of Mental Health Nursing 29, 299–311 2020.

3. Coid J, Ullrich S, Kallis C, Keers R, Barker D, Cowden F, Stamps R. The Relationship Between Delusions and Violence. JAMA Psychiatry. 2013;70(5):465-471.

4. Fazel S, Gulati G, Linsell L, Geddes JR, Grann M. Schizophrenia and Violence: Systematic Review and Meta-Analysis. McGrath J, ed. PLoS Medicine. Volume 6(8) 2009.

5. Moncreif J. Magic Bullets for Mental Disorders: The Emergence of the Concept of an “Antipsychotic” Drug - - Journal of the History of the Neurosciences, 22:30–46, 2013

6. Johannessen 0, Joa I. Modern understanding of psychosis: from brain disease to stress disorder. And some other important aspects of psychosis. Psychosis, 13:4, 289-301, DOI: 10.1080/17522439.2021.1985162

7. McGrath J etc ; Psychotic Experiences in the General Population. A Cross-National Analysis Based on 31 261 Respondents From 18 Countries Queensland Brain Institute University Of Queensland May 2015

8. Alsopp K, Read J, Corcoran R, Kinderman P. Heterogeneity in psychiatric diagnostic classification. Psychiatry Research 279 (2019) 15–22

9. Frances A. The new crisis of confidence in psychiatric diagnosis. Annual Internal Medicine 2013:720.

10.Whitaker R. Viewpoint: do antipsychotics protect against early death? A critical view. Psychological Medicine , Volume 50 , Issue 16 , December 2020 , pp. 2643 - 2652

11. Chen Y etc, Antipsychotics and risk of natural death in patients with schizophrenia: Neuropsychiatric Disease and Treatment. Sichuan University, Chengdu, People’s

Republic of China (2019)

12. Deacon, B. The biomedical model of mental disorder: A critical analysis of its

validity, utility, and effects on psychotherapy research. Clinical Psychology Review 33 (2013)

13. Carey T , Mansell W, Tai S. A biopsychosocial model based on negative feedback and control. Frontiers in Human Neurosciemce, 28 February 2014. Sec. Cognitive Neuroscience.

14. By Lila P. Vrklevski, Kathy Eljiz, and David Greenfield : The Evolution and Devolution of Mental Health Services in Australia. University Of Tasmania Inquiries Journal, 2017, VOL. 9

15. Beder S, Gosdon R. Pig Pharma:Psychiatric Agenda Setting by Drug Companies. Universality Of Woolongong 2003.

16. Palmer M, Ross D. Tracing the maddening effects of abuses of authority: Rationalities gone violent in mental health services and universities; Edith Cowan University Western Australia 2014

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In response to: Mental Health Reform - Call For Action - Part 2

Re: Mental Health Reform - Call For Action - Part 2

I've pondered this further, @Willy. I know you would like to make things that confound us and the disreputable system go away, but, to be honest, I can't see that there is a cure-all for this situation.

We all come from different situations, and unless we want to constantly re-visit and compare our conditions and abuses, it all leads nowhere. You would like the people who keep us 'here' to help us when they are profiting from not doing so? I tried that, and it was a dismal failure. They prefer the bird-in-their-hand to trying something new; and letting the downtrodden give them a run for their money would be too risky for them. They may not survive in a world where integrity is key.

For me, I have no desire to do any reading on the matter. Never have. Never will. It is all just a mess. They are all just guessing, experimenting, finding that their book-learning is inappropriate in a real-world setting, and are doing untold harm while they peddle their incompetence and self-importance, enriching themselves while impoverishing us and wasting government funds.

There's an enormous world out there, and I'm just trying to find a way that I can be part of it. I don't think it is healthy to dwell on the world of so-called 'mental illness' as it narrows our world view. I'm not 'mentally ill', I'm psychologically abused, have been all my life, and expecting my abusers to back off when it is all that keeps them going was a dream I gave up on some time ago.

As I see it, we have to clean up the mess our own lives are in and, for me, I just don't know how that can be done. There is no magic wand, or individual who can do that for me – except the people who did this to me. And they are having too much fun.

Maybe I'm wrong, but that's how I see it.

In response to: Re: Mental Health Reform - Call For Action - Part 2

Re: Mental Health Reform - Call For Action - Part 2

@Historylover
I guess the difference between us is that I believe I have at least partially found my way out of the similar mess to you that I was in not all that long ago and I am willing to share my insights and experiences. I am also well aware that many, perhaps most people with so called MH concerns, are simply not interested for various reasons including the very real emotional pain that these issues bring up for many of us when confronted. It seems to me that the effort involved in dealing with our own pain makes us exceptionally vulnerable to the abuse that some others knowingly or unknowingly inflict on us.

Imo, the current attempts at MH reform in Victoria where I live are not working. A survey taken not that long ago showed that many people believe the system has got worse since the Victorian Royal Commission report into mental health was released in 2021. There is also plenty of evidence to show that the claim that people like ourselves with genuine lived experience are being consulted about proposed reforms is a farce. As you point out, the whole game has been taken over by vested interests and we are left holding the short straw.

What I believe needs to happen is that we need to tell our story to Australia and possibly the world in a way that gets heard and understood. I am not allowed in this forum to even type some of the words I would use to describe this story which is one of the reasons it is necessary to move this discussion away from this forum.

I don't know how successful this will be or if it will bring about any significant change but the other option is to do nothing which will probably just allow things to get progressively worse.

I am inviting others to join with me in this attempted effort. At this stage I expect a few will do so but most won't.
So be it.


Regards

Willy

In response to: Mental Health Reform - Call For Action - Part 2

Re: Mental Health Reform - Call For Action - Defining the term BioPsychoSocial etc


@Former-Member wrote:

thank you so much for sharing your perspectives and experiences on this @chibam. I know we always have to be aware of how power plays out in MH and be aware of the needs of everyone. I'm wondering what kind of things have you done to cope over the years when the MH system hasn't met your needs?


With all due respect, @Former-Member , the widespread fixation on getting people to "cope" is one of the biggest problems of all. Because while we're wasting time talking about "coping", we aren't talking about fixing the problems.

I'm a good little soldier. I'm not prone to making a fuss. So "coping" comes as second nature to me. I just sit politely and wait for the good times (which we are promised are inevitable) to come around. All this has done for me is to make me old, ugly, bitter, and no better off then when I started.

In all honesty, I wish I hadn't been able to cope. I wish I'd been born far weaker in body, and that the distress I felt when my problems first began had finished me there and then. It would've been a far more humane and favorable outcome. "Coping" has only brought me 2 decades of senseless misery.

In response to: Re: Mental Health Reform - Call For Action - Part 2

Re: Mental Health Reform - Call For Action - Part 2

@Willy, if you get the site up and running, I will have a look to see if it can be taken anywhere. Who knows? I just don't want to immerse myself in the life I am trying to leave behind. I'm trying to re-build in a real world that isn't dog-eat-dog. Haven't sighted anything closely resembling it at this stage.

@Willy, no-one but the people who inflicted this mess on me can get me out of it. We'd have just needed to work as a team and respect each other. I thought it quite simple, but vested interests abound in every walk of life. There's always someone trying to better themselves at someone else's expense. I wish I was born with this knowledge. I was very naive and trusting, but they've cured me of that. Perhaps I was also a dreamer.

As for Commissions, surveys, investigations...it just keeps some people busy and looking like they know what they are doing, like they actually understand and care. They don't.

The only way to clean up the mental health industry is for the people who have made this mess to clean it up themselves.

I'll watch your progress with this idea with interest.

In response to: Mental Health Reform - Call For Action - Part 2

Re: Mental Health Reform - Call For Action - Defining the term BioPsychoSocial etc


@Former-Member wrote:

And I would LOVE a bureaucracy support service. I have ADHD and the differences in my brain mean I really struggle with admin even though I know it's important. It's cost me THOUSANDS of dollars over my life. I know it's something I would benefit from.


TBH, @Former-Member , I am amazed that we are still talking about this, all these years after the robodebt fiasco, and still no such service has been constructed. Surely the robodebt fiasco highlighted for the government, in no uncertain terms, that we need therapists to handle these sorts of crisises for their patients? People kiIIed themselves over that debacle! Ergo, this service must obviously be woven in to our national suicide prevention strategy. Because if they don't fix the beaurocratic grief, how on earth do they expect their gonna prevent the suicides it causes?

And also, just to clarify, beaurocratic grief is just one of the multitude of real-life problems that we need the mental health system to be prepared to resolve for its patients. We either need to redesign the system so that it actually fixes this stuff, or build an alternative "real life problem"-solving system that fixes this sort of stuff.

In response to: Re: Mental Health Reform - Call For Action - Defining the term BioPsychoSocial etc

Re: Mental Health Reform - Call For Action - Defining the term BioPsychoSocial etc

Thanks for the tag @Willy

There is no one size fits all. You can have someone with all the right knowledge and wisdom, but you just don't gel with them and don't want them to help you.

You can have someone you bond with to help you but they have no experience in how to help you in the right way. The personality part of therapy is just as important as knowledge. First impressions.

In response to: Re: Mental Health Reform - Call For Action - Defining the term BioPsychoSocial etc

Re: Mental Health Reform - Call For Action - Defining the term BioPsychoSocial etc

@AussieRecharger
I fully agree with you

In response to: Re: Mental Health Reform - Call For Action - Defining the term BioPsychoSocial etc

Re: Mental Health Reform - Call For Action - Defining the term BioPsychoSocial etc

Just wondering how you're doing, @chibam and joining in on a post from a time ago is the only way I know to contact you. All good out your way?

In response to: Re: Mental Health Reform - Call For Action - Defining the term BioPsychoSocial etc

Re: Mental Health Reform - Call For Action - Defining the term BioPsychoSocial etc

Hi @Historylover @chibam
I'm doing OK. The usual ups and downs but nothing too problematic.

I've been spending a lot of time researching the whole mental health services issue in Australia and talking to people on various forums etc around the world. I'm learning a lot including that the problems we have here in Australia are very much global ones in one form or another.
Some of what I am finding out is rather distressing. Countries like the UK that have tried to implement MH reforms seem to find that they are often taken over by new autocratic interests while the people with MH problems remain at the bottom of the pile and continue to be subjected to malpractice and abuse albeit in sometimes new and different forms.

Here is a recent discussion from a private facebook group that deals with problems about Dialectical Behavioural Therapy (DBT). Some problems obviously can't be readily fixed just by issuing new laws or spending more public money.
Question : Does anyone here know anything about RO-DBT? Apparently developed by a British psychologist and specially for people who are ‘overcontrolled’ as opposed to ‘undercontrolled’. They use it for those with anorexia or chronic depression or OCD type behaviours, apparently. They say that ’overcontrolled’ people don’t do well with standard DBT, suggesting they do better with this one. I am sceptical. Presumably it’s still behavioural.

Response: The problem I see with DBT, RO-DBT and all these related therapies is that they are merely techniques which are all to easily used in a mindless, mechanical cookie cutter way to try and reshape peoples lives. People are not roles of pastry waiting to be stamped into a socially acceptable shape and then shipped off as an economically viable packaged person. At best these therapies provide a template that a wise, sensitive and empathetic guide may be able to use to help someone move forward a little on their life journey in search of wholeness. At worst they are a cruel and brutal process for chopping people up and creating even further fragmentation of an already damaged psyche.

I have also been looking at alternative ways to facilitate online discussions outside of this forum about advocating change. As you say, there is not even an easy way to contact another member, let alone have a fluid ongoing discussion about an issue with an individual or group.
Here are three possible approaches.

1. Set up a discord server. Look up www dot discord dot com for further information. This is free and quick and easy to do. I have a little bit of experience with setting up and using discord servers. Two public discord MH support servers that I currently participate in are Schizophrenic Spectrum and You Are Not Alone. Discord servers can also be set up as private invitation only. Unlike facebook groups etc, discord servers can be anonymous.
2. Set up an ordinary wordpress blog website and add a community discussion backend to it with free plugins. The advantage of this approach is that it would provide some public presence for reform advocacy views which you don't get with the discord server. It would also be easy enough to provide a facility where anyone could lodge a complaint about MH services is Australia. What is done with these complaints is another issue but there are certainly things that can be done and that would probably be one of the first tasks of an advocacy discussion group. This arrangement is not free. It would cost approximately $AU250 per year to set up and run. I am prepared to pick up the initial cost for the first year and hopefully there would be enough public donations to cover operating costs after that. Again I have some experience setting up this sort of thing. I just don't want to turn it into another MH advocacy "business".

3. There is an American journalist and author named Robert Whitaker who writes on science, medical and MH reform. He has a web site set up called MadInAmerica dot com. There are a number of affiliate sites in other countries like MadInTheUK dot com. As far as I can see there is no MadInAustralia yet. It may be possible to pick up the affiliate ship for Australia. I haven’t looked into this in any depth yet.

Please feel free to share this information with anyone else you think may be interested.

Regards

Willy

In response to: Re: Mental Health Reform - Call For Action - Defining the term BioPsychoSocial etc

Re: Mental Health Reform - Call For Action - Defining the term BioPsychoSocial etc


@Historylover wrote:

Just wondering how you're doing, @chibam and joining in on a post from a time ago is the only way I know to contact you. All good out your way?


More or less, @Historylover .

I took some hits last week that are still smarting, to be honest. A bunch of unrelated things that have made me feel like things haven't gotten any better at all, and all the progress I thought we'd made has all just been a deception.

Otherwise, things are pretty much as usual for me. 🙂 Thanks for asking.

@WillyI haven't read your post yet, but I'll try to tomorrow. I just popped in quickly to reply to @Historylover .

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