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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

69 replies

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

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

@Historylover

Hi @chibam
I understand what you are saying . It often feels like I’m taking one step forward and two backwards. This mental health journey certainly seems to be a slow and often frustrating one for all of us.

My experience has been that good peer-to-peer support can make a big difference and this seems to be increasingly recognised despite the efforts of some to dismiss it as irrelevant. Simply put, it is easier and faster to travel together than alone.

One of my frustrations is that in my opinion, this forum doesn’t support the sort of relationships that I believe are necessary and/or most useful. I have been learning lots from other online forums that do this much better than Sane. I will try and pass some of this experience onto the upcoming Accreditation meeting if anyone is interested in listening.

If you want to talk about some of the things that have been happening for you recently I am happy to listen and maybe offer feedback if and where appropriate.

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

Just sending thoughts and best wishes, @Willy. I'm a little snowed under at the moment, but I'm not complaining.

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

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

Good to hear from you @chibam. Sorry to hear you've been going through a bit of turmoil. I hope it all gets put behind you quickly. Tough going here at the moment, too. Such emotional turmoil in our lives sometimes. Just better to stay indoors for me, and out of trouble as best I can. As long as you're well. Take care.

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, @Historylover 🙂. Sorry to hear about your own troubles. 🙁 Hope things are getting better, there.


@Willy wrote:

If you want to talk about some of the things that have been happening for you recently I am happy to listen and maybe offer feedback if and where appropriate.


Well it started with me sending a query off to Lifeline about their procedures, and being told in response that their too busy to answer any questions about their procedures, as they are only a charity with limited resources.

While I can't fault them for doing the best they have with the little they have, this response set off all sorts of alarm bells for me. We are talking about the great safety net that Australia relies upon to save it's suicidal citizens; and they are not open to scrutiny, because they don't have the resources to acommodate scrutiny? How can a system that important not be open to scrutiny? What if they were doing things wrong? What if they were causing more harm then good? (n.b. I'm not alleging that they are doing anything wrong, I'm merely posing an important hyperthetical question)

With the role they play in the suicide/mental health landscape, I think Australia needs to be able to understand what they are doing and how well they are doing it. The fact that they are opperating under a haze of such (understandable) uncertainty, hidden from our view, concerns me deeply.

Then, I got a newsletter from "Lived Experiance Australia", which raised concerns harkening back to my earlier discussion with you re: people like us mistakenly leaning upon supposed "lived experiance" advocacy orgs that don't truly speak for us at all.

There were a couple of worrying items in said newsletter; one was about promoting a new set of "image usage guidelines" which I found to be pretty backwards, and anchored in underlying principals I don't agree with.

The other was an endorsement of a new campaign, from a suicide prevention organization I can't say I'd ever heard of before. The campaign itself, I found to be quite appalling; recruiting "friends" and "families" of suicidal people into constantly badgering/guilt-tripping suicidal people into abstaining from suicide. The prisoner/prison guard relationship between the suicidal and non-suicidal will be thriving for many year to come under this sort of culture. 😞

Then, delving deeper into the philosophy of said organization, their entire attitude seems to be grounded in the notion that suicidalness is a physiological brain malfunction, meaning that doctors and medical literature are the go-to sources of expertise on how to percieve and handle it.

And, as I said, these people - and their campaign - were being endorsed by this "lived experiance" organization! So if the "lived experiance" reps are now siding with the traditional medical establishment in promoting this tired attitude that our brains are wonky, then who the hell is going to speak for us?

We can only speak for ourselves, it seems.

But the trouble there is, because we lack the clout and prestige of being an official organization, nobody's ever going to listen to our tiny, insignificant little voices.

I'm used to having to speak my own mind in official arenas. But having that illusion of an organization that was on the side of people like myself pulled out from under me was nonetheless quite stomach-churning. Getting hurled back to square one is a really bad trip.

Here endeth the rant. For now, at least.

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

@chibam . @Historylover

Hi chibam,

I can empathise with your experiences. At the beginning of this year, shortly after my run in with the Victorian Mental Health authorities I decided to try and do something about the abusive practices I had experienced. My agenda at that stage was simply to challenge the excessive use of unnecessary Involuntary Treatment Orders (ITO) and Involuntary Confinement Orders (ICO).

That simple vision has escalated into what for me has become a frightening insight into a massive global battle for control over the lives, minds and wallets of those deemed to be suffering from mental illness.

As each new scenario unfolded I went through periods of despair and hopelessness feeling that the task I had gotten involved in was too big and way beyond my capabilities.

But then I would encounter other people already out there fighting for MH reform.

One person who has inspired me in recent days is a Canadian medical doctor by the name of Gabor Mate. He is a couple of years older than me and has obviously been through the rough and tumble of life. He very recently published a book called “The Myth Of Normal” Trauma, Illness and Healing in a Toxic Culture.

I have read the book. I found it a heavy and dark read but I strongly recommend it to anyone interested in mental health and healing.

It took Mate more than 10 years to write this book and he said that he nearly gave up on a number of occasions because he became overwhelmed by the task. I’m so glad he didn’t give up. For me his book and life’s work answers many questions and provides direction for me to move on in my own mental health journey as well as becoming an effective activist in this MH reform project.

Mental health reform is not going to be an easy or trivial task but there appear to be a growing number of disenfranchised and often angry people supporting it. There are also unfortunately many opportunists which is what I think is some of what you are encountering and becoming frustrated with. Obviously these are further issues that need to be dealt with.

I believe that each of us who are willing to do so can make a difference and that every little bit helps. I also believe that even a very small group can have a much louder voice on any particular issue than any of us can individually muster and I have what I believe is a simple viable plan to achieve this.

I would like to talk more with you and others who in the recent past have indicated interest in mental health reform. Unfortunately the Sane forum moderators keep blocking my communications on this topic.

Please get back to me with your thoughts.

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

Thank you for the message, @Willy. I'm just not up to anything at the moment. Cheers.

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 @Willy I have read Gabor Mate's other book about the physical manifestation of illness in our bodies from emotional trauma, it's called When the body says no.

It was full of case examples of his practice as a doctor and so interesting. I'm keen to read the book you've mentioned too.

I don't understand the reasons for sane blocking us being able to communicate anonymously via another online channel. It would be helpful if a moderator could explain this.

I am interested to find out your plans and how we may be able to make a difference.

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

I understand the problem, there is often so little energy left after dealing or trying to deal with the MH stuff that there is nothing much left for anything else. I too have to pick my days. Many people just don't appreciate how hard it can be.
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

@Patchworks
I haven't read any of Mate's other books. The Myth Of Normal has only been out a couple of months. Mate and others are saying that his previous books only deal with specific issues where as this one attempts to define the "whole picture". I have the e-book version which I am happy to share if you are interested (azw3, mobi, epub pdf format etc)

I am working on trying to find a way for those of us who wish to do so to anonymously communicate off forum about mental health advocacy initiatives. A few emails have gone back and forth between myself and the Sane forum management. Hopefully some arrangement can be worked out in the not too distant future.

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

I support what your aspiring to do, @Willy , but my inner pessimist doesn't like your odds of being able to outshine the visibility of the major organizations in either of our lifetimes. Maybe the best we can hope for is to lay a foundation that might bear fruit for the next generation.

More concerning, however is the prospect of building unity amongst a group that is largely ideologically divided. As you say, there are countless people who are frustrated with mental healthcare as it currantly stands (and that number is growing). But within that cluster of unhappy patients, there is a stark divide amongst those who wish for the system to keep addressing their brains as the problems that need to be corrected, and those who want the system to shift instead towards providing real-life help, and leave our brains/personalities alone.

And that is just one of the many key rifts that make us a devided people. Another one is the appropriateness of suicide, and consequently, the appropriateness of inforcing anti-suicide dogma upon those who don't believe in it.

I can't see how any organized gathering of disgruntled patients would ever be able to rally as a unified voice (and thereby gain the clout and recognition of a sizable organization) when we are so opposed on many key issues. I think you'd need to first lay out a specific charter of the values and aspirations of whatever organization you intend on forming, and in doing so, you'll almost certainly alienate a sizable portion of the disgruntled patient community.

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