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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 - The Underlying Problem

@Historylover
@chibam

@Zoe7

@Appleblossom
@wellwellwellnez
@FloatingFeather
@hanami

@moxi
@tyme

@Jynx
@Gwynn

@Shaz

@Itsjustme

@Patchworks

@Former-Member

@Anastasia
@AussieRecharger

@BPDSurvivor

@Faith-and-Hope

@HenryX

@jem80

@Judi9877

@NatureLover

@outlander

@Shaz51

@ShiningStar

@Snowie

@MDT

@Boo13

@maddison

@pinklollipop15

@Eve7

I have marked this post to the attention of all those that I am aware of who I think are interested in this topic

chibam,
I have thought long and hard about the issues you raise and I agree in general with what you say.

I have said right from the beginning that my reform agenda was not to try and dictate to people what MH treatments or practices they should or shouldn’t embrace. That would be totally opposed to my philosophy.
My initial objective was and still is to try and minimise the use of Involuntary Treatment Orders (ITO’s) and Involuntary Confinement Orders (ICO’s). I have personally been subjected to this sort of treatment throughout my adult life including a traumatising experience less than 12 months ago. I am aware of other people on this forum who have had similar recent experiences and the Victorian Royal Commission into Mental Health (2021) reported that these sorts of abusive practices were very wide spread. (ref 1). I feel confident in saying that there are at least a few people on this forum who would agree with me that enough is enough.

You have asked for a charter of values and aspirations. I believe the obvious and appropriate one is the World Health Organisation (WHO) comprehensive Mental Health Action Plan (2013 -2030) (ref 2)

Unfortunately my investigations around the world have shown that the problem is far greater than I originally envisaged. In Australia you have a significant number of people running around talking about new or updated legislation and government spending on new programs and infrastructure who appear to have very little if any understanding of what I believe is the underlying problem. There also appears to be quite a few people ever willing to try and take financial advantage of the situation at a cost to those us who are trying to cope with our mental health problems.(ref 3)

At the moment it appears that more than 80% of the world still perceive the biomedical model of psychiatric diagnosis and medication as the best or only solution to all mental health problems for everybody. It would be naive to think that any individual or group could initiate the massive underlying social changes required to alter those perceptions but given the huge and growing number of people affected by MH problems this movement is just as important as any other marginalised group struggling against oppression. These changes can and do happen albeit slowly. (ref 4)

Another problem is that as a group, people with mental heath problems appear to be very submissive and often greatly underrate their own power.

The first time I was committed to a psychiatric hospital in 1971 was a painful and traumatic experience. If you wanted to avoid physical and mental abuse or worse you quickly learnt how to kowtow to your abusers. In that place subservient obedience was equated with sanity. Since they had the power to do what they wanted and keep you there as long as they wished, you had to “prove” your sanity by being consistently subservient no matter what. It took me several months of faking sanity according to their absurd standards to get discharged. Very shortly after I left hospital and for the first time in my life, I started experiencing psychotic episodes.

While the large state psychiatric hospitals and their coercive malpractices are gone the attitude and culture have remained. It appears to have seeped into the entire fabric of the global mental health movement including of course the institutions and organisations here in Australia.

I am suggesting that over a very long period of time, the stigma of a mental health diagnosis has been used to strip us of our self esteem and dignity. This then makes it very easy for those in control to continue to use and abuse us in any way they see fit.

I believe that before any significant reform to mental health services can be achieved, this intolerant, authoritarian attitude towards those of us who experience mental illness has to change. People are already talking about it and in many cases even acknowledging what should be happening but at this stage the talk is not the walk In far too many situations, those of us who suffer from various forms of mental illness are still being treated as some sort of brain damaged incompetent subspecies instead of valid human beings who have been forced by circumstances largely beyond our control to explore and deal with issues that society, on the whole, still don’t understand and mostly don’t want to know about. We are the pioneers who have been pushed out to the edges of reality to explore the psychic landscape while the rest of humanity look on. Far too often they do so with judgement and contempt.

On a brighter note, as I talk to people around the world I am seeing more and more small groups of people stepping up, speaking up and having an impact.

As I see it, the immediate problem is to try and come up with some arrangement for people on this forum who wish to anonymously discuss mental health reform in an open, productive and ongoing way to do so.

In my opinion the existing format of the SANE forum does not adequately support this type of discussion so we need to arrange some other suitable means of doing so.

Setting up a facebook group is one easy and obvious answer but it is not anonymous.

Unfortunately I feel that the SANE management are not being co-operative or supportive towards this endeavour.

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. World Health Organisation -Comprehensive Mental Health Action Plan 2013-2030 21 Sep 2021 download- https://www.who.int/publications/i/item/9789240031029
  3. 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, 299311 2020. 16. Palmer M,
  4. United Nations Human Rights Council
    Right of everyone to the enjoyment of the highest attainable standard of physical and mental health 44th session 15 June 3 July 2020

Regards

Willy

In response to: Re: Mental Health Reform - Call For Action - The Underlying Problem

Re: Mental Health Reform - Call For Action - The Underlying Problem

Hi @Willy

Thanks for including me. You will have to excuse my reply, as I don't have any where near the skills in expressing myself & writing, as you do.

I am encouraged by your stance. I strongly believe in many, if not all the issues you raise.

I'm not sure if you intimated this within your post - I have a strong sense that many who work in MH, make decisions on the basis of 'this is what the protocol always is.'

It is difficult for me to express, sorry.

I am optimistic in the sense that I believe many professionals actually have a desire to help others - not all.

My thoughts on the issue are that if or when, offered an alternative 'protocol' changes appear.

I do believe there can be dramatic changes in how MH operates within my lifetime. As you said - it must occur, we are at crisis point. This cannot continue.

I believe many professionals are unfortunately stuck within an 'industry' mindset. I believe many professionals - know as well, or perhaps more than we do - this current model we are relying on is broken. I believe many MH workers want change too.

In a way, they are trapped within a system more than we are. We are fighting them. They are fighting an unchallenged system from inside. Everyday they see how their position is failing to support those in crisis. And ecsaserbating. Everyday they must challenge their colleagues & the system, whilst concurrently standing alongside it.

It is very confusing & I'm not entirely sure I'm making sense

I see the potential for change coming in the form of creating a new inertia.

I am having difficulties expressing myself at the moment. Perhaps you can try to read my reply from an overall perspective, instead of specific s - & please overlook things I have failed to express adequately.

I'm trying to offer a general sense of my thinking.

Whether I am overly optimistic, or naive? Change must occur.

In response to: Re: Mental Health Reform - Call For Action - The Underlying Problem

Re: Mental Health Reform - Call For Action - The Underlying Problem

Hi @maddison
You are expressing yourself perfectly.
I fully understand where you are coming from and agree with you 100%.

Thanks for making the effort to respond.
I love real people.

Regards

Willy

In response to: Re: Mental Health Reform - Call For Action - The Underlying Problem

Re: Mental Health Reform - Call For Action - The Underlying Problem

@Willy

Safe, affordable, easily accessible housing.

Mental health crisis would be solved overnight.

Thankyou - so much - I love real people too.

In response to: Re: Mental Health Reform - Call For Action - The Underlying Problem

Re: Mental Health Reform - Call For Action - The Underlying Problem

@maddison
Housing is certainly a factor, especially for young people in the 15-25 age group who often need supervised accommodation, not hospital or being left to "couch surf ".
The housing issue doesn't however explain the prolific administrative abuse problems that are happening to many people who are in no way a "danger to society". Many people are being given forced medication treatment against their consent and some are being subjected to confinent, often for resisting or not complying with the forced treatment. This is what nearly happened to me recently. I could very easily have been locked up for the rest of my life because I refused to comply with the idiotic and irresponsible demands of incompetent bureaucrats.
And I live in a perfectly good, comfortable, clean, well kept home. I even manage to pay my bills on time (lol).

Regards

Willy

In response to: Re: Mental Health Reform - Call For Action - The Underlying Problem

Re: Mental Health Reform - Call For Action - The Underlying Problem

Thanks for the tag @Willy but having been on an ITO as recently as last week I am too fragile to even begin to process your proposal.

In response to: Re: Mental Health Reform - Call For Action - The Underlying Problem

Re: Mental Health Reform - Call For Action - The Underlying Problem

Hi and thanks for the tag @Willy

In NZ your question is about to be tested by the law in a court case (sorry for the long link):

https://theconversation.com/were-taking-the-government-to-court-to-challenge-new-zealands-outdated-mental-health-act-heres-why-191166?utm_medium=email&utm_campaign=Latest%20from%20The%20Conversation%20for%20November%2014%202022%20-%202464024675&utm_content=Latest%20from%20The%20Conversation%20for%20November%2014%202022%20-%202464024675+CID_ac79a5afe66ef3243bd68eaf0660ee97&utm_source=campaign_monitor&utm_term=Were%20taking%20the%20government%20to%20court%20to%20challenge%20New%20Zealands%20outdated%20Mental%20Health%20Act%20%20heres%20why

I've been a voluntary patient in a psychiatric unit and had the mental health act slammed down on me so then I can't leave. My latest inpatient experience was an example of that. I don't begin to understand why the drs think they can hold us against our will. I'm sure there's arguments for and against but as the article linked says, it's a human rights issue. People with disabilities still have rights. Your statement about our being stripped of our self esteem was interesting and challenging. I agree with you it's the stigma and the way we get treated that combined leave us feeling less. Somehow we've ended up highly stigmatised especially us with schizophrenia spectrum disorders.

I'm tired of it, the illness is difficult enough without all that additional burden. Having something to do about all this sounds like a good idea. I'm not sure what we can do but even if we reduce the stigma a bit, it's progress

In response to: Re: Mental Health Reform - Call For Action - The Underlying Problem

Re: Mental Health Reform - Call For Action - The Underlying Problem

@WillyI meant to come back and apologize for the bleak cynicism in my last post which seemed, for a while, to have stopped this conversation dead in its tracks. You've probably realized by now that I have trouble telling when I'm supposed to keep bleak perspectives to myself.

I'm glad to see that things have gotten rolling again, however. 🙂

From yours and others' recent posts, along with the documentation you provide (especially that WHO plan), this topic seems to mostly be focussed on the evils of the psych ward, and the ways those evils have begun to seem out into the broader community, e.g. through the stripping of rights, ect. .

That's (thankfully) an area I don't have any personal experiance in; so I don't know what I could contribute to that conversation.

My personal focus has always been the considderably 'tamer' evils that go on in the small, everyday therapy clinics, which although less grievous then the matters you're talking about, still ruin peoples' lives on a daily basis.

Obviously, the inhumane conduct you (and others here) talk about needs to be stopped. And I've always supported those who have been fighting to put a stop to it. But I've always had this ongoing niggling concern that, in the course of remedying those evils, the lesser evils that afflicted me, and still afflicts many others, may get neglected, and be aloud to persist. Because they aren't as visable; they aren't as shocking to people who discover them; and, IMHO, there is much less noise being made about them. Perhaps rightfully so. But it's hard to not have a sore spot for the wrongs you've personally endured, you know?

In response to: Re: Mental Health Reform - Call For Action - The Underlying Problem

Re: Mental Health Reform - Call For Action - The Underlying Problem


@maddison wrote:

@Willy

Safe, affordable, easily accessible housing.

Mental health crisis would be solved overnight.


Quite so, @maddison .

But, to reiterate some stuff I said on one of the group chats did come weeks/months ago, for some people, a home is made out of bricks and mortar, for others it's made out of people.

So I think there needs to be a keen awareness, and constant public acknowledgement from our leaders that, in the interest of addressing the homelessness crisis, some people might need to be given a building; others will need to be given a family.

In response to: Re: Mental Health Reform - Call For Action - The Underlying Problem

Re: Mental Health Reform - Call For Action - The Underlying Problem

@chibam
@maddison

For me personally I would rather live in a hovel with friends and family than in a mansion alone.

Friends and family in reasonable accommodation seems like a good, almost idyllic compromise.

Regards

Willy

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