Compassion through understanding: A way forward

                       

Presentation to Ontario Select Committee on Mental Health and Addictions

 

Thursday June 18th 2009  

Patricia Forsdyke

  Kingston , Ontario

 

I am not here to praise the system of care for the seriously mentally ill. It is derailing and is in for a big crash. I hope that you, as elected officials, listen carefully to what I have to say, and act upon it. This mess was not created by one party. It was a long time in the making. If you all survive the next election you could help to put in place something that might work for those 3 percent of the population with the most serious mental illnesses. Families and their loved ones will be eternally grateful if you do so.  

For three decades I have seen activists who call themselves consumer survivors aggressively push some very scary agendas. People paid by the system and bureaucrats have supported these agendas often out of self interest. You will hear from these people often. Much of what you hear will be dead wrong and very dangerous for the 3% with brain diseases. Some courageous professionals have spoken out against the nonsense, but have often been side-lined. Compassion through real understanding would be a step in the right direction. Those consumers who deny that schizophrenia and manic depression are not medical illnesses should not speak for those who need medicine to put their lives back on track.

Beware of those who use phrases such as mental health issues, anti-medical model, medicalization of the mentally ill, alternative therapies, and wellness models. These people go on about labels and choice. Some of them even say that stigma is worse than the illness itself! Absolute nonsense!

 I came across the following:  

“Consumers have a personal responsibility for their own self-care and    journeys of recovery. Consumers must strive and give meaning to their experiences  and identify coping strategies and healing processes to promote their own wellness.” Where does this come from? Concept 9 (Mental Health Services Administration. Department of Health and Human Services , USA ). Would they dare say that to someone paralyzed by Multiple Sclerosis or Motor Neuron Disease?   

  As Dr. Sally Satel MD says, “if any psychiatrist followed the ten fundamental principles of recovery elaborated in the statement from NIH to the letter, he/she would be at risk of malpractice.” (See Catalyst, below).  

  Such utterances have displaced more important priorities like careful diagnoses, state-of-the-art medical treatment, and much needed stabilization for those with these serious illnesses. The silly politically-correct talk has so far won the day, and many who have the more serious diagnoses are left to fend for themselves, on the streets, and in our jails. The mess is clearly here to stay unless families have the courage to speak the truth, and professionals and politicians act on   that truth.

 There will likely be many more chronically ill, unless someone heeds these warnings. This will place a bigger burden on families and on the long term care system.  

 Schizophrenia and Manic Depression must be accepted as no-fault illnesses. Those afflicted have lost in genetic roulette. These are physical illnesses just like Multiple Sclerosis. The much touted “recovery movement” clouds the issue. It would be more honest to talk about stabilization and management, as one does with insulin-dependent diabetes. We must counter the discrimination that leads to dollars and services being denied to the seriously mentally ill. Other serious neurological conditions (Multiple sclerosis, Lou Gerig’s disease) are readily accepted as no-fault conditions and do not require us to demonstrate that they need healthcare dollars.

 

FAMILY BLAMING IS STILL GOING ON. It now comes with a new twist. See email in your material. This was written by someone who did a survey for the Canadian Schizophrenia Society. I was stunned and flabbergasted by this one.

   

EVIDENCE OF SYSTEM  FAILURE:

The evidence indicates total system failure. We see more mental health courts, increasing police involvement, and less hospital beds. In droves, the seriously mentally ill are landing in jail instead of in hospitals. The numbers in jail instead of hospital are mind-boggling. (I refer you to the Simon Fraser data on BC incarcerations. This 111 page document comes with a breakdown on diagnoses.)

Those professionals who are trying to do an exemplary job caring for those with the most serious diagnoses – Schizophrenia, Manic Depression – are given little encouragement to do what they were originally trained to do. Many opt out to look after the more frequent milder psychiatric conditions. The currant mantra is that 1 in 4 people have a mental illness. Using statistics in such a way is bound to eventually backfire. Do we give service to the common cold or do we treat pneumonia? Both are important, but the question is which takes precedence? Ignoring those with Schizophrenia and allied disorders places a very heavy burden on society, families and taxpayers. For make no mistake, the public pays one way or another.

 

My Expertise

Someone, knowing a bit of my training, drafted me to participate on a Canadian Mental Health Association (CMHA) committee in 1980. They were just getting going here in Kingston . The money was rolling in. I attended the committee for about six months, then left out of sheer frustration. The organization seemed to know little about psychoses. Book marks were passed around – have a daisy for your mental health! I then looked up the newly-founded Friends of Schizophrenics (FOS).  Bill Jefferies founded FOS in 1979 and he stayed focused. He said that if anyone ever needed a friend it was a schizophrenic – hence the name. Later it became the Schizophrenia Society (SS). Families were crying out for help for their loved ones. My involvement has lasted almost three decades. I knew that what the CMHA was talking about had little to do with the most serious mental illnesses. The CMHA was driven by ideology and was astonishingly naïve. This continues to this day! Just taking a look at who ends up on committees illustrates where the power is and the direction that the government has gone. Those connected to CMHA have garnered most of the funds and the power.  

Prior to having children I had been a State Registered Nurse (SRN) in England and then a registered psychiatric nurse. In addition I had background in neurology. I did my psychiatric training in a private hospital, but worked later in a State Mental hospital . Fraudulent Freud held a lot of sway in those days. I can tell you that psychosis has little to do with which station in life one is born to, or what your family did to you. It is the disease itself that inflicts the wounds.

 I have sat on multiple focus groups and committees, both at Queen’s Park and here in Kingston . I served for years on the Executive of the SS in Ontario (SSO). I was the chapter president here for many years. We helped families navigate the system. Many of their loved ones were rescued from crippling delusional symptoms. Some are now lovingly attending to the needs of their elderly parents – driving them to appointments, etc; But initially it took years to get treatment for them.

 I left the SSO this year with some sadness because I believe that it has strayed from its original purpose. Initially it was grassroots up. In my view it is now top-heavy and muddled in its thinking. Family members once had some power to affect things (see attachments by H Lamb: Family Movement in Jeopardy).

[N.B. Bill Jefferies had two brothers with the illness and one of his four children was also afflicted. One of my four children is afflicted with a serious mood disorder. Alas this did not become evident until 5 years ago. Again there is some family history in generations past.]

 

ABOUT THE MENTAL HEATH COMMISSION OF CANADA (MHCC)

It seems to have little sense of direction and its priorities are questionable. Please see my response to their recent draft. Appendix A

A quick online trip to a recent British Mental Health Commission will show that if the MHCC follows in those footsteps they will end up with exactly the same mess (see One day survey by British Mental Health Act CommissionFew hospital staff and extremely ill people being looked after by too few.  Appendix B ). Note that recently the British have allocated 18 million pounds to battle stigma! Rather the money should have been allocated to address the most pressing problems.   

Yes, there is stigma but decreasing it should not be overplayed as a cure-all. There is a naive assumption that removing stigma would take people to treatment.  Lack of insight (anosognosia) is the biggest problem in terms of accepting treatment. If you do not think that you are ill, why would you agree to treatment? Stigma is not part of this equation. As for anti-stigma campaigns, one beheading on a bus will reverse any public gains they are attempting to make.

 

WAIT TIMES

Prompt treatment seldom happens. Michael Wilson co-chaired an enquiry which stated that only 25% get the treatment that they needed. It would be lovely to reduce wait times, but if the system is clogged with the ever-revolving door and lack of trained staff, what can anyone expect?

Those who cannot speak for themselves are at the mercy of those who can. Those calling themselves “consumer and sometimes survivors” are taking over the system. This other population will continue to hold the high ground along with those professionals who have a vested interest in following along with such agendas. Those with very serious forms of these illnesses are often let go by the very teams that are supposed to look after them.

Much remains to be known about these devastating diseases, but enough is already known to tell us that these sufferers have been unlucky in genetic roulette. Yet, the MHCC goes on about prevention! Since we do not understand the mechanism of these disorders, how can we possibly prevent them? But we should be able to put services in place that will minimize collateral damage.

Society has a lot to answer for, but one’s personal biochemistry is not one of them.  It should be stated and understood by those planning services that these are no-fault diseases. The commission should stop going on about primary prevention. It could, however, argue for adopting better and more truthful strategies and promote better outcomes by proposing realistic services that put  beds back into the system. Repairing the Mental Health Acts must be a top priority.

 

PLANNERS AND MENTAL HEALTH LEGISLATORS often fail to  appreciate that people who are in the throws of an acute psychosis lack insight to make decisions that are in their best interests. Families have been denied any right to aid their loved one in getting the care they so desperately need.

Eg. Scott Starson, Vincent Li.The recent case here in Kingston of Toni Rossato.   Anyone who saw him on the stand knew that he was a time-bomb waiting to go off.  A handful of lawyers were fired by this very sick man and many judges were involved before he finally went to hospital. He spent nearly two years in jail.  He was not made N.C.R because the defence lawyer argued that the patient would not be able to work in the United States if this were done. Anyone listening to the patient on the stand would know that work was not a priority, but danger to family and society clearly was.

An untreated psychosis is always potentially dangerous. (Elevated life time risk for suicide in schizophrenia 10-15%). Families suffer the brunt of aggression if the condition is not stabilized. The danger is often played down but its about time someone told the truth. June Conway Beeby knows a lot about danger. Mathew, her young delusional son, drove two ordinary dinner knives through his eyes. June will tell you about danger. She is here today. When he was released from hospital she was told never to be alone with him when he was released from hospital because he was dangerous! Mathew was not taking his medication.

Major mental illnesses run in families. Their medical care must be state of the art care and it must be a top priority. Those who say that stigma is worse than the disease itself do not know what they are talking about. Yet it is true that there is discrimination to those with these brain diseases by some in the healthcare system even from healthcare professionals. But stigma has become a weasel word. Spending too much money trying to eradicate it will lead nowhere. One beheading on a bus will do more to stir up stigma than any big campaign will do to get rid of it. Compassion through understanding would be a step in the right direction and repairing some of the nonsense that has been peddled. If one suggested to an insulin dependant diabetic that he did not need insulin, malpractice suites and culpability would follow.    

 

REPORTS GALORE!

Hasseltine (a good report) but was put on the back burner.

The Graham Report paid lip service to the top priority group but predictably strayed from its lip service because it had another agenda. The local Crisis Centre in Kingston over a decade ago illustrated this well enough. Fortunately it was closed after spending a fortune. It often refused to allow people with schizophrenia across the threshold.

Putting People First, Striking A Balance, and so on, were just more paper And now we have:

Moving in the right direction put out by mostly the foxes watching the chicken coop. Its  report is a waste of expensive paper, yet even it could not ignore the growing numbers of people involved with the courts and the shortage of beds. I suspect the presenters of this report really believe that if only there was more community care funding all would be well. As for safe non-hospital beds …! Will these patients be observed by trained staff, or is it just a step up from a hostel bed?

Whatever happened to the report by the Conservatives

This report was co-chaired by Canadian Ambassador to the U.S Michael Wilson. It disappeared with the new Government! We have had enough reports. We need action.

 

HOSPITAL BEDS. What should be the correct number of acute and long term beds?  Some have suggested 100 beds per hundred thousand. A few years ago 32 beds per hundred thousand was the aimed-for benchmark.in Ontario . Recently in Kingston bed reductions were threatened. It was staved off.  

To get a handle on what is needed one has to look outside the country as well as from Province to Province.  Look at the prison population. These are the current beds. The only place where I have uncovered serious data is in a report from Simon Fraser about the mentally ill in prisons and jails in B.C.

Corrections, Health and Human Services. CARMA (Centre for Applied research in mental  health and Addiction). This hundred page report has a lot of data. Diagnoses within this prison population in B.C are well documented. This tells precisely what happens when you take out too many beds. Someone should pay attention to the fact that HIV, hepatitis and TB are serious risks to the mentally ill who have slipped into poor life styles as a result of their illness.

Recommendations to turn the mess around when we have stopped these make-work studies. A great deal is already known and it should be acted upon: 

1. Take a serious look at what happens if there are not enough acute and long term beds. (Look at what the Simon Fraser data tells us about the BC Corrections System and how many are in the corrections systems with serious diagnoses.)   

2. Accept the fact that there is no way to prevent these illnesses. Science will no doubt eventually lead to a better understanding of the failed chemistry that causes them. Proper medical care can minimize damage.

3. Make top-notch medical care the first priority. Community care can only do so much. It is not the whole picture.

4. Accept that access to the full range of psychiatric medication is cost-effective.    When drugs have been tested they should be made available. But one size does not fit all. These are powerful drugs and patients need close monitoring.

5. Revise the Mental Health Act in Ontario . It must be made to work and this can only happen if there is acknowledgment that lack of insight (anosgnosia) makes it impossible for a person to make a really informed choice in his/her best interest. Families MUST be allowed to act in their loved ones’ best interest.

6. Along with community treatment orders, we should fund a treatment advocate to put some balance back into the system. Example: Professor Starson (a.k.a Shultzman), Vincent Li, and the trial of Toni Rosato. The latter fired six or so lawyers, and got through several judges, before he finally reached hospital. Months later he commenced treatment. Those who protest that serious untreated psychosis is not dangerous are not telling the truth.          

7. DO something about O.D.S.P.

 

Society may have a lot to answer for, but it is not responsible for the personal biochemistry which predisposes someone to major mental illnesses like Manic Depression and Schizophrenia. The walking wounded are quite different from those with brain diseases. To muddle these two groups up does disservice to both.   

    

I leave you with the following astonishing quote from an email sent to Marvin Ross by the sadly mistaken person who did the Quality of Life Study for the Canadian Schizophrenia Society

“Framing mental illness, and schizophrenia in particular, as genetically based biologically driven diseases of a broken brain is actually increasing discrimination and social distance. The unintended consequences of emphasizing the disabilities and deficiencies of the illness and the pain …”

She goes on to say:

"I know that no one in the Schizophrenia Societies believes that they may be contributing to the worsening of stigma and discrimination, but that, in fact, may be happening."  

 And she closes with:

"I think we need to dramatically reframe how we talk about schizophrenia if we are to achieve truly transformative change."       !!!

Can you imagine saying this to families of Diabetics or of those afflicted with Multiple Sclerosis? The full quote is attached.
 
Families have often lost friends when a loved one is stricken, but this kind of statement is insulting beyond measure. They neither caused their relative’s illness, nor stigmatized their relative, but sometimes they have had to keep quiet for obvious reasons. I would say that the author of the quality of life report is adding to family stress?

ENCLOSURES:

When There are Almost No Beds Left. H. Lamb MD et al.

A Family Movement in Jeopardy. Lamb MD and Hoffmans

My response to the draft commission document.

One day survey of Psychiatric Hospitals. England and Wales .

Email to Marvin Ross from Neasa Martin

To Fight Stigma, Start with Treatment.

 

RECOMMENDED READING LIST:

Schizophrenia: Medicine’s Mystery Society’s Shame. $10 dollars a week by    Marvin Ross.

Madness in the Streets: How Psychiatry and the Law Abandoned the Mentally Ill by Rael J. Isaac & Virginia C. Armat.
The Insanity Offence by E Fuller Torrey …and anything else by him.

The Catalyst. The Treatment Advocacy Centre.

A Statement of Madness: The new guidelines for treating mental illness need      help by Dr Satel.

Budgeting People to Death by Dr Jeffrey Gella

Schizophrenia. Breaking the Silence by Patricia Forsdyke

http://post.queensu.ca/~forsdyke/schizoph.htm

 

For transcript of P. Forsdyke's presentation to Ontario Legislature Committee Click Here


Back to: Schizophrenia Page (Click Here)

Back to: Home-Page  (Click Here)


This page was established in June 2009 and was last edited on 19 Sep 2010 by Patricia Forsdyke