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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 - The Underlying Problem

@chibam
There is absolutely no need to apologize. I value and appreciate you feedback and what you call the bleak stuff makes me stop and think. I also have my ups and downs and in the down periods I often just have to put everything aside and wait for the upsurge to carry me a bit further along. It is a bit like being a jelly fish in the surf.

As for clinics etc, for some reason I have never had anything much to do with them so that is a world outside of my experience.

I think all that any of us can do is to look around and do what we can whenever an opportunity appears. That will also depend I think to a large extent on our own area of experience.
When I look around I see a lot of interest in mental health around the world and so it should be. MH impacts a very significant percentage of the worlds population and it is increasing. It looks to me like people are at last starting to figure out why. I don't know if this activity is something new or something I just haven't noticed before but things certainly seem to be happening.
Regards

Willy

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

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

Hi @Willy @chibam @Eve7 @Historylover @Patchworks

I have so much to add - it's late & now is not the best fit.

Quick response:

@Willy I'm sorry for the treatment you have endured. I believe you. I have had one similar experience to exactly what you are describing. I cannot imagine the hell you have been put through. I'm sorry. All I can say is that I'm really thankful you are writing here. I haven't had a chance to read everything previous. I believe in what you are fighting for & standing beside you.

@chibam you melt my heart with your observation that there are those who will need to be given a family. Total genius. ❤️

@Eve7 I'm sorry to read of your recent struggles. Thankyou for sharing that you are feeling fragile. 💚

I have my thoughts on CTOs from perspective of carer & vicariously through the person I care for. It is complex. I won't go into all that now.

Regarding housing I wanted to mention that I think it would change so much more than providing necessary human right. It would blur the distinction between those who have & those without.

By affording everyone the human right to live safely (yes it would ease huge mental strain) we will, as a society become a step closer to understanding what it is to be equal.

If we can provide equal rights in one area of what is a very basic human right - access to shelter- they maybe it is possible that other inequalities would become viewed as obscene & we can have greater chance of exposing these abuses for what they really are.

I have strong suspicion that everything stems from housing.

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:

@chibam you melt my heart with your observation that there are those who will need to be given a family. Total genius. ❤️


Thanks, @maddison !🤗❤️


@Willy wrote:

@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


When I was coming of age, just about the hottest thing going was the TV show "Friends". I never watched it religiously; but I dipped in and out enough to know what was generally going on.

It gave me some lofty expectations of what to expect of my 20s and perhaps early 30s. I just assumed that becoming an adult meant automatically getting to move in with a group of tight-knit housemates your own age, and having a whole heap of wacky misadventures with them. Sharing your life; all your ups & downs, with a real family of loved-ones you wouldn't give away for all the tea in China.

And then, it doesn't happen; and nobody can tell you why. All they do is look down their nose at you, as if having never gotten to move in with your real family - or even meet them - is somehow your fault.


@maddison wrote:

Regarding housing I wanted to mention that I think it would change so much more than providing necessary human right. It would blur the distinction between those who have & those without.

By affording everyone the human right to live safely (yes it would ease huge mental strain) we will, as a society become a step closer to understanding what it is to be equal.

I have strong suspicion that everything stems from housing.


Indeed. It's less about shelter from the rain and snow, and more about the status it affords, isn't it? In many ways, we want the respect much more than the material comforts.

I know I've harped on about this many times before, but when I was in therapy, my therapist told me that no woman would ever want me unless I had more money. My dearest dream has always been to have a loving marriage, so I can't tell you the disheartening impact those words have had on me. I think the reason I gave up on life ultimately stems from that claim.

But there's truth in that, too, isn't there? How many parents would be openly aghast if their son/daughter brought home a fiance who was homeless?

As I think you were implying, the "have nots" don't get any respect in this society. To be a "have not" is to be unworthy of respect, acknowledgement, opportunity, freedom, and most of all, love.

That puts people who don't give a rat's ass about the material goods in a pretty pickle. If you want the respect; the friendship; the loving marriage, you need the bling to be deemed 'worthy' of it all.

Personally, I just hate the indescipherable complexity of it all. If everybody chases the material trappings, how do you tell the ones who really only care about the intangible end-products (i.e. love, respect, ect.) from the shallow people who actually dwell on the material junk?

That's what made my therapist's depiction of the world so sickly to my eyes. Even if I did make a million dollars and get a beautiful woman to fawn over me, how would I ever know if she was in love with me, or just my bank account?

Frankly, I prefer to be broke. At least that way, I'll know that any woman who might give me a second glance must be genuinely interested in me, not my money. Poverty keeps the predators at bay.

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

Re: Mental Health Reform - Call For Action - Legal Action

Hi @Patchworks

Thanks for the link to the article. I have had a look at it and I agree with what you are saying.

I am not sure whether we would be able to use the NZ legal approach but it is something I will definitely look into it. I understand however that there are at least two other approaches we could use to take our concerns to a court of law here in Australia - possibly the high court.
I was speaking about this recently with Craig Wallace, the CEO of the Victorian Mental Illness Awareness Council and his response was if you can get it together, go for it. I believe that there are a lot of people around who would like to see this happen. We just need a few people like ourselves willing to tell our stories. This can probably be done anonymously and with very little individual effort. The problem seems to be that people like ourselves have just been too frightened to speak up and the perpetrators of these atrocities just continue to get away with it.

I believe a discussion about this is starting up on the Schizophrenia Spectrum forum. I think it would be worthwhile for anyone who is an Australian resident who has personally experienced these sorts of things in Australia or anyone who is formally a carer of somebody so affected to join in this discussion.
To join this forum go to www dot discord dot com and open a free anonymous account. Then use that account to access this forum.


Regards Willy

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

Re: Mental Health Reform - Call For Action - Attempting to deal with the problem

@chibam
You said - I know I've harped on about this many times before, but when I was in therapy, my therapist told me that no woman would ever want me unless I had more money. My dearest dream has always been to have a loving marriage, so I can't tell you the disheartening impact those words have had on me. I think the reason I gave up on life ultimately stems from that claim.
If a therapist said that to me I would deliver a few choice words like the following-

"general chibam stop The birds are flying stop pls proceed to Schizophrenia Spectrum to await further orders via www dot discord dot com stop wait at hash triggering dash general for further orders stop" .

Something like that would really confuse the hell out of them and then I would just walk out. Everyone would probably think I was mad but so bloody what.

When It comes to relationships, I am a bit of a disaster but anyone can get lucky. I will share a few relationship war stories with you that may lift your spirits when we both get to the other side where I expect we will be both be freer spirits.

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

@chibam sounds like you have a big heart - like me 💚 Hold on to it forever.

I'm thinking whilst on the surface inequality looks to serve only those at the top - I'm proposing that it doesn't even do that.

I'm thinking they are all running around terrified that they will become a person without. One wrong move & they could fall like any one of us.

It's too much to think about.

You will find a good woman one day. They are rare, but becoming more popular!

I had an online chat on another platform last night. This person mentioned to me that their children are being taught about all sorts of acceptance - that we were never taught in primary school. They said that this generation of kids has way more empathy for people with differences.

The world is changing🤞💚

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

Re: Mental Health Reform - Call For Action - Reform Advocacy Group

Hi @maddison, @chibam

I too believe the world is changing in regards to attitude to mental health. Many people however seem to need bit of a nudge.
According to the World Health Organisation, people with mental health conditions all too often experience severe human rights violations, abuses, coercive practices, discrimination, and stigma from mental health care providers. We know this has been happening to some of our colleagues from this forum.
A new peer-to-peer reform advocacy group has been formed to directly tackle these problems both in Australia and elsewhere and not just talk about it but actually do something. Their manifesto is the World Health Organisation Comprehensive Mental Health Action Plan
World Health Organisation(WHO) Comprehensive Mental Health Action Plan.
I believe that help from people at all levels would be welcome so feel free to indicate you're interest.
Regards
Willy

In response to: Re: Mental Health Reform - Call For Action - Reform Advocacy Group

Re: Mental Health Reform - Call For Action - Reform Advocacy Group

Hi @Willy

"I too believe the world is changing in regards to attitude to mental health."

What is it you want society to do with those with mental health issues? Society wants people to contribute, to not be a cost burden on the rest of us. Does society need to be looking for cures or does it need to be accepting? Should society accept the burden of mental health or should there be an expectation of personal responsibility?

It's a bit of a rhetorical question, but I see the main theme as acceptance vs cure. Cost vs Inclusion. Our own personal needs vs the greater good for society. How do we get society to accept the costs of mental health when it means that people might have to give more and get less?

In response to: Re: Mental Health Reform - Call For Action - Reform Advocacy Group

Re: Mental Health Reform - Call For Action - Reform Advocacy Group

Hi @AussieRecharger

Not directed at me, tho I happened to land here so.. If I can offer my thoughts?

The way I see it - cure & acceptance are one in the same.

We all have to contribute to this world whether we like it or not

The concept that that less conventionally abled people contributions are of less value, is an illusion.

A society that cares about one another, values difference, is ultimately richer - monetary wise & in every other way possible.

What do we do to achieve this?

Conversations like this are good. I believe @Willy might be brainstorming legal avenues? There are lots of things we can do. Talking about people with mh diagnosis, physical disabilities, minority + LGBTQIA groups in a way that is inclusionary helps to break down stigma.

I don't think it is up to one group in particular to have to pay for those less fortunate (& if it is, they are likely not motivated to do so) I think it's up to all of us. Small actions by many ppl over time could potentially create change needed?

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