Reinventing the Wheel – More on Health Standards Organization

By Marvin Ross

Back in November, I wrote a very critical blog about the Health Standards Organizations and their attempt to find a psychiatrist to finish a draft standard on mental health services in Canada. Their efforts had previously been criticized by Susan Inman in the Huffington Post. She then wrote in the Tyee that with these new standards, those with severe mental illness will wind up getting even worse care than they do now.

The president of the Canadian Psychiatric Association (CPA) also complained to them as did another psychiatrist in a blog on the CPA site. All the criticisms are linked in my blog.

That blog did get a number of comments that were also critical of them. One reader in the US stated:

“I got a headache trying to understand what the HSO was, what is it’s authority, and what is it’s driving source of funding and philosophy. Standards of care and accreditation should be a governmental or professional organizational function. The HSO is an enigma.”

Another Canadian reader stated:

Unfortunately, Accreditation Canada https://accreditation.ca/ appears to have SUBCONTRACTED the development of new standards to HSO — which appears to be part of some larger, multinational organization of mysterious origins. In any case, their shoddy work and obvious ignorance is astounding. (When I completed HSO feedback form on draft mental health standards, it asked for my zip code)

 

There was also a reply from Health Standards which can also be seen at the end of that original blog. I did not think it made much sense so I attempted to find their media person but got caught in their voice mail hell and hung up when I could find no human operator. I still have no idea who that person is but I did send an e-mail to them November 17. They responded via twitter on November 19 that they had my e-mail and were preparing answers. On December 12, I reminded them that they had not responded This is what I asked below in bold marked with a Q, their responses sent to me on December 17 marked with an R. My editorial comments to their answers are in italics starting with My comment. Despite my correspondence with them, no one has ever given me their name. The e-mail was not signed and came from “communications”. A robot? A secretary? The person who delivers coffee? I have no idea.

Q. What are the requirements for your committees?

R. The Mental Health and Addiction Technical Committee is made up of 16 voting members and three advisors and will soon include a psychiatrist as a voting member.

Worth highlighting are the two co-chairs of the committee:

Rita Notarandrea, MHSc, CHE, is currently the CEO of the Canadian Centre on Substance Abuse and Addiction and has held several roles during the 21 years she worked at the Royal Ottawa Hospital (Mental Health Care & Research), including 13 years as the COO.

Ed Mantler, Registered Psychiatric Nurse, MSC, is the Vice President of Programs and Priorities at the Mental Health Commission of Canada.

You can see the rest of the committee members on page II of the draft standard at http://healthstandards.org/files/Mental-Health-EN-PR-2018.pdf.

My Comment: Ms Notarandrea has been with substance abuse for many years and when she was with the Royal Ottawa Hospital (a psychiatric facility) she was the chief operating officer and left in 2005. Not, in my opinion, sterling qualities for this role as it does not appear that she has clinical experience.

Mr Mantler is with the Mental Health Commission of Canada which is an organization that I have severely criticized for years. His main focus, it seems, is on reducing stigma and promoting mental health first aid. Again, efforts that I have written critically about for a number of years. Prior to that, he was CEO of physician recruitment in Saskatchewan and senior operating officer at the University of Alberta Hospital. Physician recruitment and operations of a hospital are not clinical roles in mental health.

Both of those agencies were part of an extensive re-evaluation on the usefulness of their role by Health Canada and both were deemed to be expendable. The Globe and Mail reported that “it is also clear that, in all the scenarios, three organizations come out big losers: the Mental Health Commission of Canada, the Canadian Partnership Against Cancer and the Canadian Centre on Substance Abuse and Addiction.”

Q Who are the general interest members and what committee criteria do they posses.

R You can find information on HSO Technical Committees here: https://healthstandards.org/standards/technical-committees/. There is an infographic about halfway down the page that explains the composition and defines each group. If you haven’t already, you can also learn more about the standards development process on this page: https://healthstandards.org/standards/development-process/.

Technical Committee Requirements

Technical Committee members apply on our website at www.healthstandards.org. They find out about us through social media, our partners, existing relationships, conferences, and targeted outreach that we conduct.

We take the following into account when selecting Technical Committee members:

1.Professional/clinical experience as it relates to the scope of the standard

2 Acceptance of agreement with of the role of the patient as a partner in care and a member of the care team

3.Knowledge of standards and familiarity with accreditation

4.Relevant committee/extracurricular participation

5.Unique experience/perspective or contribution that relates to the standard’s topic

6.Commitment and anticipated level of engagement in the technical committee

7.A balance of positions within the health system (for example national versus provincial, acute care, and primary/community-based services)

8. Balanced representation from a geographic perspective (remote, rural, and urban)

Q Who are the policy makers, how big is the committee and how were they solicited and/or accepted?

My comment:  This does not seem to have been answered unless it is part of the answer to the previous question

Q What is a product user?

My comment: This also does not seem to be answered

Q. You stated “Unlike clinical practice guidelines, our standards follow the patient journey through the system by including elements of population health to plan services and identify health inequities, chronic disease prevention and management”

What does this mean? How do you prevent chronic diseases like schizophrenia or bipolar disorder?

My comment  Not answered

Q. You are a not for profit so could you send me your last financial statement?

R Our financial information is made available to the public on Canada Revenue Agency’s website: https://apps.cra-arc.gc.ca/ebci/haip/srch/t3010form23-eng.action?b=852490200RR0001&fpe=2017-12-31.

Unlike many other non-profits, HSO do not receive funds from public entities outside of fees for services performed.

My Comment The stated aim of HSO from their financial reporting is the promotion and protection of health. I am not sure what that means other than maybe they are protecting our health and promoting it. How do they do that?

Their main activity is to provide the international health sector community with leading edge accreditation, education and advisory services to improve health care and patient safety. I am not sure how that translates into programs

To accomplish all this, HSO has 10 full time employees all earning over $120,000 a year and one earning over $350,000. There are also 13 part time employees earning a total of about $142,000. Total salaries comes to a little over $2 million. Total revenue is $4.8 million with Total non tax-receipted revenue from all sources outside Canada (government and non-government) of $1.4 million. Total revenue from sale of goods and services (except to any level of government in Canada) is $3.4 million. Total expenditures are $5.6 million with $1.3 million going to professional and consulting fees.

Q Why do you charge $100 for standards?

R Except in the rare case when another organization works with us to sponsor a standard, we cover 100% of the cost of developing our standards. This cost is recuperated through the sale and licensing of our standards. This model is used by many other Canadian and International Standards Development Organizations, including the CSA Group and ISO.

Q Health Quality Ontario just brought out guidelines/standards for the treatment of schizophrenia and they list all members of the committee. Many of them I know either personally or by reputation and it is a very competent group. Why are your standards needed?

R Clinical practice guidelines focus on a specific illness – for example, schizophrenia – and recommend things like assessment tools, medications, and treatment options. HQO standards provide clinical practice guidelines, specific to Ontario.

HSO quality and safety standards can be applied across Canada and, in many cases, internationally. They focus on providing the best possible patient journey rather than focusing on how to treat a specific illness. This includes topics such as: accessibility and safety of services; health promotion and disease prevention; awareness and early detection of illnesses, including initiation of treatment and continuity of care during transitions in service; and engaging clients and families in service design. HSO standards are based on the HSO Quality Framework, which consists of eight quality dimensions that all play a part in providing safe, high quality care. For more information on the HSO Quality Framework, see page XII of the draft standard.

Both types of documents have a place in the health system. HSO quality and safety standards are intended to be used along with clinical practice guidelines and health care providers’ professional and regulatory requirements; they do not replace or duplicate them.

My Comment I do have to say that in my opinion their rationale for what they are doing is gibberish. When you suffer from an illness, you want the best possible treatment developed using appropriate evidence and recommended by those who actually treat. Those are what clinical practice guidelines are whether we are talking about schizophrenia, hypertension, stroke or whatever. Those are guidelines that apply to everyone everywhere.

The Health Quality Ontario guidelines which they dismiss as being relevant only for Ontario is an absurd contention. Clinical practice guidelines do not know geographic or political boundaries and should not.

Health Standards focuses on “best possible patient journey”. Well, if you or a loved one face a health problem, the best patient journey is to receive timely diagnosis and timely treatment using the best modalities that we have. What else is there or am I missing something?

As always they mention disease prevention and would that not be wonderful if we could prevent many of the illnesses that plague us – cancer, mental illness, whatever. But the truth of the matter is that we cannot prevent unless we know what the cause is. That is certainly the case with most serious mental illnesses. How will their efforts prevent someone from developing schizophrenia or bipolar disorder?

As my US colleague, DJ Jaffe, wrote recently, Serious mental illness is about biology and it CAN NOT be prevented.

If Health Standards is serious about improving the patient experience then all the money they have for staff would be well used in providing more psychiatric hospital beds for those in acute phases, more community programs for those stabilized and more affordable supported housing for those trying to survive in the community. Neither the streets nor jail are suitable therapeutic venues.

 

 

Guest Blog What Goes Through My Head When I Diagnose A Child With Schizophrenia

By  Dr Jennifer Russel, Child and Adolescent Psychiatrist, Vancouver, BC

Reposted from Huffington Post with permission from Dr Russel and for the parents of those with schizophrenia for the Christmas Season.

I know what it’s like for people and families facing harrowing, life-altering illnesses to receive the nourishing support they need from those around them. My husband survived pediatric cancer. At age 14, he developed chest pain, a cough and was eventually diagnosed with Hodgkin’s Disease. After surgery, chemotherapy and radiation, he achieved remission and has been well ever since.

The psychological effects of his cancer still haunt us. His mother has made me promise to call her and wake her up if he is ever in an Emergency Department — she still lives with fear to hear those words again, “Your son has cancer.”

My husband often speaks of the support he received from family, friends and his school during this very difficult time. Unfortunately, these helpful responses aren’t what the families of my patients receive.

As an adolescent psychiatrist, I have spent the last 10 years working on inpatient psychiatric units, where I have diagnosed and treated adolescents with what was initially psychosis, and later diagnosed as schizophrenia. I have had to sit face to face with mothers, fathers, aunts, grannies, brothers and sisters, and tell them that their teenager — the same one that cuddled up to them at night, baked cookies and scored the winning goal in soccer — has schizophrenia, a lifelong chronic condition which has robbed their child of their mind, their ability to differentiate what is real and what is fantasy.

Even once we have treated the frightening positive symptoms (hallucinations and delusions) the vast majority of patients are left with lifelong negative symptoms (apathy, inability to experience pleasure, lack of motivation, decreased or blunted emotion and decreased speech) in addition to significant cognitive decline. By the time these parents have come to me, their child has often been ill for some time. Despite this, for many this diagnosis comes as a surprise.

No one wants to hear, “Your child has schizophrenia.”

I have spent considerable time reflecting on how to deliver this news. Is there a right or best way to tell a parent about their child’s schizophrenia? How can I be supportive, empathic and hopeful, yet honest and direct? I try to imagine — how would I want to be told the news?

What continues to shock and sadden me is what happens after parents leave my office. Too often when they call their families and friends, they discover that they, particularly the mothers, are blamed for their child’s schizophrenia or other psychotic disorder.

All of the mothers of my patients have been blamed (at some time or another) for their child’s illness by people they encounter, and even by health care workers. Yes, this still goes on. It is time that we stop Mother Blaming, and we focus on what we know is true about schizophrenia — that it is a brain disorder, where there is too much dopamine active in the brain.

Although we don’t know the exact cause, scientific evidence does tell us that parenting, even bad parenting, does not cause schizophrenia. We all (myself included) have parenting moments that we would like to take back or “do over.” Although we should take the time to reflect on these moments, and work to do better, we should do so with the knowledge that they do not cause schizophrenia.

I say this because the holidays are coming up. When a child gets diagnosed with cancer, which often has better outcomes than schizophrenia, the family is embraced with love. They are showered with care packages, hampers, food delivery schedules and spa gift cards. Go Fund Me campaigns are even started. When a young person is diagnosed with schizophrenia, the family is often isolated, shamed, ignored and silently shut out of the community. Sometimes I wonder if people think that psychosis is contagious.

What these families need is to be embraced, loved and cared for in the same way we care for parents whose children have other serious illnesses. It’s time to stop blaming, and start caring. This holiday season, as you prepare to celebrate, please take a moment to think about how you can support a loved one who is or has a family member suffering from a serious mental illness. Think about what that parent could be going through, and care in the best way you know how.

 

 

 

 

Baby It’s Cold Outside – Political Correctness Gone too Far

By Dr David Laing Dawson

Like many others (according to Google) I had to check the lyrics to see what the fuss was about.

The male lyrics in this duet are a little 1950’s pushy. It is easy to see Frank Sinatra or Dean Martin in the role.

But there is nothing in the female lyrics that indicate she does not want to stay. Rather she wrestles with what her father, her mother, her brother, the neighbour, and even her stern maiden aunt will say. She is conflicted. She wants to stay but what will people think? He, on the other hand, seems to have no qualms, no conflicts. But then, presumably, he is single; it is his apartment she is visiting; he is not worried about what his mother, father, brother, the neighbours, or a maiden aunt might say. This male may even boast about his conquest with his buddies the next day. But there is no indication from the lyrics that he holds some sort of economic or employment power over her.

So, in some ways, this song is a nice bit of sociological observation of the times. A casual sexual encounter puts the woman at far more social risk than it does the man.

And she wrestles with this. She is portrayed as an adult woman tying to thread her way between her needs and wants and societal values of the time.

To ban this song is not only silly it is very regressive. Banning the song infantilises women. It does imply (not the song, the ban) that adult women are so fragile that they should never be put in a position to decide on their own to stay or not to stay. Such a ban, trying to avoid one denigrating stereotype, promotes an equally denigrating stereotype.

Also Coming in January – Two Years of Trump on the Psychiatrist’s Couch

By Dr David Laing Dawson

To be released January 15, this is a collection of the blogs written in the past two years and a bit about Donald Trump and American politics. The excerpt below is from the introduction.

It is perilous for a psychiatrist to write about a political figure. First it is unethical to analyze or diagnose someone without actually examining that person within the social contract of a doctor/patient relationship. And to make those findings public one needs the consent of the patient.

And our analyses, formulations or diagnoses are context dependent. That is, the purpose of these labels and interpretations is to help (alleviate suffering first) someone who is a patient.

No matter how much science lies behind these formulations and diagnoses they are still words, words that carry implications, much baggage, and interpretation is required.

Let’s take the word “narcissism” for example. We all know what it means, roughly, and how it is derived from a Greek Myth of a beautiful hunter who had so much self-regard that he fell in love with his reflection in a pool and could not leave the pool. Eventually his passion for himself and his reflection consumed him and he turned into a flower.

Curiously that myth also includes devoted followers who commit suicide for him.

Of course narcissism is not a thing. It is a spectrum of implied inner traits (implied by others from observations of behaviour) of self-regard. How much is too little? How much is too much? How much is extreme? We all need a little just to get out of bed in the morning.

Within the social contract of a doctor/patient relationship, this idea of narcissism only arises when we see these implied traits limiting or hurting our patient. When they seem to be the central problem, limiting relationships, limiting vocations, causing harm to self and others, then we might add the words Narcissistic Personality Disorder.

Even then we might argue whether it is a bona fide fixed trait, or an extreme overcompensation for its opposite. And what is an appropriate (or good, functional) level of self-regard for a child, a teenager, a young person, a mature person, especially in an age of “identity politics” and “being the best self you can be.”? At what point for a political leader does narcissism contribute to success, or make someone a wonderful subject for satire, or be dangerous for others?

And when we colloquially call someone “narcissistic” it is never meant as a compliment.

So many caveats.

But, but, we live in a moment of history when the leader of the free world (as the president of the United States is so often called) may hold in his hands the future path of democracy, the fate of millions all over the world, and, ultimately, the fate of our planet.

And that fact, I think, trumps (sorry) all the caveats. It is a time that anyone who can see the dangers posed by this man has a duty to speak up.

I started these blogs before Donald J. Trump was improbably elected. The most popular among them has been my assessment of Donald J. Trump’s mental and emotional age. I arrived at an age simply from observations of his behaviour and his statements, while asking the question, “At what age in development would one expect, or not be too shocked, to observe this behaviour?” I came up with an average of 14. Though occasionally his displays of sibling rivalry and his assessment of his own greatness are definitely pre-pubescent.

We become easily inured, desensitized. The outrageous and abnormal can be made to feel normal. A step at a time. The German government enacted something like 50 laws over a short historical period, starting with restricting Jews from Union Leadership.

Some of the political pundits on television comment regularly on the “abnormal” becoming “normal”. But the very presentation on TV contributes to the desensitization.

These blogs constitute my interpretation of the journey we are on with the Presidency of one Donald J. Trump as it is happening.

 Two Years of Trump on the Psychiatrist’s Couch will be released on January 15 in print and in e-book formats. It is available now for pre-order at Amazon for the kindle version. Visit https://www.amazon.com/dp/B07LCSWKNF

Mind You: The Realities of Mental Illness by Dawson and Ross will also be released on January 15 in print and e-book formats. It is available now for pre-order at Amazon for the kindle version. Please visit https://www.amazon.com/dp/B07LCT2V4V

Dumb as a Rock

By Dr David Laing Dawson

Having lost the centrality and privilege of childhood and now struggling with their own insecurities there is a moment some teens decide, and announce to me, that ALL their peers are stupid, dumb as rocks, and lying. Usually for teens trapped in this moment of narcissistic injury they make one exception. For boys it may be an online friend supporting his complaints in a gaming forum, for girls it is a best friend who goes to a different school.

Usually they grow past this period of developmental disappointment: A combination of time, some success at something, some judicious counselling, the love of a parent, finding a boyfriend or girlfriend, and sometimes taking the right medication for excess anxiety.

The analogy with Donald J. Trump is imperfect. For the teenagers their “dumb as rocks” peers comprise a classroom of 30 or a school of 1000. It is the limit of their experience at this age. New acceptable friends are hard to find.

But Donald, for every friend, associate and peer he decides is “dumb as a rock” there are two new friends waiting in the wings for a role in the play, and a chance to be best of buddies.

But the language he uses is the same:the playground accusations, the remarkable hyperbole, the name calling, the self reference, the projections, and the underlying insecurities.

I suspect the only reason Donald’s tweets sometimes sound more sophisticated than a 15 year old complaining to me is that he is quoting some words and numbers from Fox & Friends, as in “the 245 times James Comey told the investigators he didn’t know.”.

As this drama unfolds over the next few months I hope the adults in the room remember we are dealing with a very narcissistic 14 year old with the moral compass of a peanut.

Perhaps we can resurrect Donald’s parents and have Mueller and Congress hand the whole thing off to family court.

 

Coming in January: Mind You The Realities of Mental Illness A Compilation of Articles from the Blog Mind You

We have decided to publish a book on the best of our mental illness blogs over the past 4 and a bit years. The book will be available in print and e-book formats everywhere in early 2019.

Below is the introduction:

We began this blog in October 2014 in order to provide commentary on the state of mental illness and its treatment for the lay public. What we provide is a viewpoint from that of a psychiatrist with many years of experience (David Laing Dawson) and a family member of someone who does have schizophrenia (Marvin Ross). Aside from his personal experience (or lived experience as it is commonly referred to), he is also a medical writer, advocate and publisher of books that take a unique look at mental illness.

To date, we have had close to 75,000 views and have been read in 151 different countries since 2014.

We also write on other topics but these are the ones on mental illness covering topics like recovery, treatments, suicide, addictions, and alternative treatments (or pseudo science).

When we began, we had this to say of our purpose:

 Welcome to the launch of Mind You. While we intend to post on mental illness,mental health and life, we decided on the name Mind You to reflect that not everything is black and white. There are ideas and opinions but then mind you, on the other hand, one can say…….

And that is what we would like to reflect. Ideas about mental illness,health and life that can be debated and discussed so that we can come to a higher understanding of the issues. And, we have separated out mental illness from mental health because, despite their often interchangeability, they are distinct.

The National Alliance on Mental Illness defines mental illness as a medical condition that disrupts a person’s thinking, feeling, mood, ability to relate to others and daily functioning. Just as diabetes is a disorder of the pancreas, mental illnesses are medical conditions that often result in a  diminished capacity for coping with the ordinary demands of life. Serious mental illnesses include major depression, schizophrenia, bipolar disorder, obsessive compulsive disorder (OCD), panic disorder, post traumatic stress disorder (PTSD) and borderline personality disorder.

On the other hand, the World Health Organization defines mental health as a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community. That is quite different from mental illness.

Unfortunately there is a tendency to confuse these and organizations like the Mental Health Commission of Canada have a tendency to talk about mental health issues and problems which are not the same as mental illnesses.

 Both Dr David Laing Dawson and I (Marvin Ross) will be posting on a regular basis on a variety of topics.

The posts we have selected for this volume are the most widely read over the past 4 years.

Mind You, ISBN 978-1-927637-31-9, 193 pages distributed by Ingram

 

Taking issue with “issue”, again.

By Dr David Laing Dawson

Poets choose words for their rhythm and sound as well as their meaning. And for a poet, that can be a meaning implied or suggested, with the rhythm, sound, and suggested meaning creating a whole that invokes a new thought and feeling, or an old thought expressed more cogently.

If a poet were to choose the word “issue” she might choose it for its vowels and sibilants and its suggestion of movement or controversy.

But when we are trying to convey information in an essay, a news article or a political statement the actual meaning of the word chosen is paramount. But that word can be chosen not as a poet might, but rather to obscure, to obfuscate, to euphemize, to negate, and even to simply shore up the speaker’s credentials.

Unfortunately words get used this way and somehow creep into our regular lexicon for decades at a time. And when used this way for a decade, by politicians, reporters and editors, we are all protected from the truth, from factual information about ourselves and others.

The word “issue” is just one of those words. I am tired of hearing it used to obscure or soften reality.

Recently,  two senior Canadian politicians resigned from their positions in order to seek treatment for “addiction issues.” It turns out that one of them may actually be addicted to alcohol or drugs, but even this was an obfuscation of the real problem of “inappropriate sexual activity”. Now even this is a silliness. “Inappropriate sexual activity” is the couple making out in the back seat of the bus from Toronto to Hamilton. But sexual harassment, intimidation, or assault are more than “inappropriate”.

The other, it turns out, has been sexting and sharing nude pics of himself over the internet and got caught in a blackmail scam.

In one of these cases the word “issue” obscures what might be alcoholism or drug addiction. In both of these cases “having issues” and “seeking treatment” obscures some stupid immature behaviour and does a disservice to people who “seek treatment” for actual illness.

We can forgive both of these men for acting in a stupid, immature fashion, but neither should ever be elected to office again. For both of these men there is no treatment beyond someone shouting at them, “For God’s sake, what were you thinking?”

And this is the real problem with constant use of the term “mental health issues”, as in “has” or “is seeking treatment for”:

On one hand it manages to endlessly widen the scope of human follies, behaviours and struggles to which we do not assign personal responsibility, while at the same time obscuring and denying the existence of true, serious mental illness, and conversely and perversely assigning people who suffer from these illnesses personal responsibility for their illnesses.

Both Terry Fox and I have leg health issues. Mine are a problem of aging joints and lack of exercise. His was, of course, cancer.