A series of articles from the Kingston Whig Standard by Patricia A. Forsdyke the past
president of the Kingston and Napanee Chapter of the Schizophrenia Society of Ontario
An editorial by Steve Lukits editor of The Kingston Whig-Standard.
[With copyright permission from the Kingston Whig Standard. Click title to go to article]
1.When Madness Comes
2.A terrible brain disease
3.Violence a real danger if disease not treated
4.Fads and myths cloud understanding
5.We must stop blaming families
6.Give disease's victims a human face
7.Fix Kingston's mental health system
Do not forsake the mentally ill by Steve Lukits
When Madness Comes 5th December 1998
Einstein's son had it. The daughters of James Joyce and Bertrand
Russell had it. President John F. Kennedy's sister had it. Van Gogh certainly had it. All
of them had schizophrenia.
So do our neighbours, the children our children went to school with, the
children of doctors and lawyers. So did my Aunt Evelyn, a coal miner's daughter. Some were
brilliant scholars, some gifted athletes. My aunt was musical. Often they were uncannily
talented at some things. Then madness came and changed everything.
I count many schizophrenia sufferers among my friends, and I respect
them for their strength of character. A warm smile coming out of an otherwise emotionless
face reveals their great humanity. They are very sensitive individuals. For their heroic
battles, they deserve a row of medals. When they themselves are improved, they feel deeply
about those who are still extremely psychotic and anguished. Sometimes when they are
actually the sickest person on the hospital ward, they think they are well and should not
be among all these mentally ill people. The farther into an episode they get, the less
insight they have. The death of a schizophrenic or harm done by a schizophrenic disturbs
them deeply. After an episode, most often patients remember their bizarre actions. That is
the curse of schizophrenia.
Even when they are fighting not to have treatment because they
have no insight into their illness, one has a sneaking admiration for their fight to do
battle with the world. We find them so frustrating during such times, because we cannot
even budge them from their false beliefs and mad schemes. We must remind ourselves that
their minds have been hijacked by the delusions or hallucinations that are products of
When I was 22, my father took me to see my Aunt Evelyn in the
Warwick Mental Hospital in England. She had been there for a quarter of a century. Though
he introduced me as his daughter, she believed that I was the Queen of England, and began
to act accordingly. She curtsied and smiled in a conspiratorial way. Dad was not exactly
amused. He looked very sad and embarrassed. He asked her if she knew who he was. He could
not distract her. Suddenly, she scoffed at his silly question and called him by his
childhood name, Teddy. She had been his favourite, among five sisters. Dad could never
quite accept that Evelyn's husband had not been the reason for her descent into madness.
There were no medications that had worked when she had her first psychotic break in 1934.
Until the end she could always play the piano for the other patients,
but she was seldom in touch with reality. My grandmother raised Evelyn's child. When I was
a child, Dad and his sisters would descend on the mental hospital several times a year
bearing hampers of food. Little was said to us children about these visits, but I could
tell when it had been a bad one. Sometimes she would be in the padded cell, other times
they would be allowed to see her. On such occasions, they would be amazed at how she
wolfed down all the food they had brought in one go.
Sometimes she would appear almost like her old self. She had one
brief spell at home after her first admission, but she pulled a knife on her mother and
was returned to the asylum. She would require protection forever.
The street has its hazards too. Remember Andre, the Kingston man who
used to walk up and down Princess Street a decade ago? His matted hair and tirades against
his demons, ensured that he was someone most people avoided. A truck ran into Andre on
Highway 401, killing him. It was almost certainly not a suicide, for people who have
untreated schizophrenia are often tricked into thinking that they have special powers.
Andre probably stepped out with his hand up, commanding the truck to stop. His fate could
have been different.
Andre had once been taken from the street. He responded to treatment.
He was hardly recognizable, quietly reading in the library. His hair was well cut. He was
clean and composed. But again, Andre slipped out of care and descended into madness. His
long hair and scalp became one, glued together with a green, oozing discharge. It was not
Andre, nor the truck driver, who were responsible for his death. It was his disease and an
inadequate health-care system. We
failed to meet his needs.
When schizophrenia is in your face on the street in its untreated form,
most of the public fail to recognize it, or tend to overlook those who have it, thinking
of them as lazy, as drug addicts or simply as the victims of poverty. We all instinctively
avoid someone who is wild and unpredictable.
While chatting recently with a very nice British pediatrician
outside a Toronto hotel, a person with obvious schizophrenia pan-handled a few dollars
from our pockets. He probably had a family who could do nothing about his plight. The
doctor was quite surprised when I said: "Another homeless person with
schizophrenia." She, like many others, did not recognize the tell-tale signs of
this dreadful illness.
Those who have schizophrenia often live on the margins of
society, even when they are relatively well. The fact is that roughly one in 100 of our
fellow mortals throughout the world are afflicted with this most devastating of brain
diseases. It is much more common than Huntington's disease, multiple sclerosis or
Parkinson's disease, and so why is it so forgotten?
Schizophrenia favours no sex, culture or social class, but once you get
schizophrenia, poverty quickly sets in. But money alone does not solve the problem. I know
of a sufferer who lives in his small Toyota and who has half a million dollars. I know of
an extremely wealthy family who occasionally catch a glimpse of their homeless son on the
corner of Yonge Street in Toronto. They are quite unable to rescue their son from his
illness. The young student or professional who starts
to hear voices no longer can concentrate and must often lower his or her expectations.
Schizophrenia is a forgotten illness until someone is pushed in front of a subway train or
a prominent sportscaster is killed because of a schizophrenic's bizarre delusions.
Medical research will eventually bring a brighter future. In the meantime, those afflicted
need your compassion and help.
A terrible brain disease 7th December 1998
I began my psychiatric nursing training in 1961, just after the first
effective psychiatric medications were introduced. The older nurses were still wondrous at
the results. They had little doubt about the nature of mental illnesses. Before
their eyes, broken brains started to work again. People who had been mad for years were
now sane. My Aunt Evelyn was not quite so lucky.
Those were the days of tea dances in the private asylums. When patients
were well enough they would whirl around the great ballroom. On one occasion, I remember a
fashion parade that had been arranged by Maureen, a former inpatient.
Maureen was a model, and she strode down the catwalk in the Victorian ballroom with great
style. Her beautiful clothes had been loaned from a posh London store. An elderly
psychiatrist sitting next to me said, "You would never guess that her head was full
of such terrifying delusions just eight weeks ago." I was to reflect on this in
future years. We all saw the bizarre behaviour, but often only the
psychiatrist and the family were privy to the secret delusions.
Then there was beautiful Mary, who was a few years older than
myself. She was on her way back to sanity. She was then an involuntary patient. Her first
breakdown found her unkempt, withdrawn and very delusional, secluded in her London
apartment. When I met her she was incredibly well-dressed and groomed, as though she
feared that any sign of dirt would prolong her imprisonment in the asylum.
Her efforts were heroic. On good days, she would go to occupational therapy to practice
her typing. Each morning early, like Cinderella, she would polish her room. The floor
would be turned into an ice rink. Then she would emerge for breakfast, dressed like Audrey
Hepburn. She never spoke to other patients. She deigned to speak to me, probably because I
had trained at the same hospital as her father, who was a doctor.
Once, in a frenzy, she intercepted me at the railway station, begging
me to aid her escape to London. Fortunately, I had no spare money. As a result of
medication, Mary was soon to be on the mend. Today, Mary would almost certainly be
untreated, filthy, petrified and holed up in a flat, or more likely, she would be on the
streets. Without a doubt, she would have been unable to cope with today's hostels.
Schizophrenia can now be treated successfully. Untreated, it
creates havoc and destroys lives. The earlier that schizophrenia is treated the better the
The average age of onset in all countries is about 18 for men and 24 for women. Though the
illness presents itself late in an individual's development, it now seems likely that the
disease has its origins in the early stages of life, probably before birth. Women have a
slight advantage because of a later first psychotic break. They may have completed more
education and be more mature before they have their first break with reality. But for all,
the disease derails lives full of promise, and it seems to strike most often when brains
are beginning to do adult work.
Brain scans reveal reduced frontal lobe activity in afflicted
individuals. Medication seems to thrust the brain back into more normal activity. Many
parts of the brain are compromised and the executive function of the brain does not quite
measure up. We've all seen a person wearing Arctic clothing in the middle of the summer,
or people in shirt sleeves and no socks or shoes when it's 20 degrees below. Canada is not
California. Some lose limbs to frost bite. Some schizophrenics have heart attacks
and don't respond to the pain. Schizophrenics are often
out of touch with their bodies until they receive treatment.
The person may have been a great student before things came unglued.
There is much scientific evidence that there is different circuitry in the brains of
affected individuals. The brain transmitters misspeak. A large sample British study of
children born in 1940 found that those individuals who went on to develop schizophrenia
showed some neurological differences early on in life. They
were later (on average) at milestones (sitting, standing, speaking, etc.) There is a
strong indication that something had gone wrong in the development of the brain in the
second term of pregnancy.
So often we hear people separate mind and body, but the mind is a
function of the brain. A human brain weighs about a couple of pounds. A broken one is very
disabling. Just because you can't see a wheelchair, do not doubt that mental illness is
disabling. The government must be sensitive to the needs of the mentally ill as it
implements workfare. Government forms are a nightmare even for healthy minds. Imagine how
stressful they must be for those battling mental illness.
Like the engine of a car, our brains can misfire. With schizophrenia,
the main organ is in trouble. The only fix that can realign the brain's circuits is
medication. As with Multiple Sclerosis, talk won't do it.
Modern brain scans can actually show where the brain is active during
an hallucination. Post mortems performed on brains of chronic schizophrenics show that
there are abnormalities in various regions. In severe forms of schizophrenia there
is a loss of tissue in crucial areas of the brain and the ventricles are larger. As with
many illnesses, there is currently no cure, but schizophrenia can be
The exact causes of schizophrenia are not yet known. A viral assault is
one suspect. Certainly there seems to be a genetic pre-disposition. Often those
afflicted have a family history of mental illness: an aunt, uncle or grandfather who was
whispered about, did strange things, never came out of their room, hid in the attic, or
died by suicide.
In 1961, my peers and I were into all the latest psychiatric fads. The
old nurses and doctors knew better: they were dealing with broken brains. They were
often more humane. They would give sedative medicine to rest the patient from their
tormenting symptoms when little else was working. Today, hospitals release, or won't
admit, patients who are in torment.
An American psychiatrist, on our ward in 1961, was heavily into intensive
psychotherapy on very disturbed patients. With hindsight it was terrible to have let this
happen. His talk therapy was like putting sophisticated software into a time-warped
computer. The effect was sometimes fatal. Two patients committed suicide around that time.
Soon, I would change my understanding of serious
mental illness. I became a staff nurse on a neurological ward and it struck me that
schizophrenia could be nothing other than a brain disease. Despite the evidence, a
few professionals are still not grasping that fact.
Violence a real danger if disease not treated 8th December 1998
My Aunt Evelyn, who suffered from schizophrenia, was strangled by
another inpatient at the age of 65. My dad had to identify her body. Forty years of
grieving came to an end. He was deeply upset and ridden with guilt. He explained how they
had tried to have her home at the beginning of her illness, but her episodes were too
violent. She pulled a knife on my grandmother. They could not be both a home and a
hospital. My grandmother was also caring for Evelyn's child.
No doubt Evelyn, during the long course of her illness, had been
violent towards patients and staff, but she was never charged for any of her assaults.
Nowadays she would be. Sixty years later, she would probably be in a prison rather than a
hospital. My father always felt ashamed that she had been institutionalized. I can only
imagine what he would have felt if she had been in jail. One thing
he knew for certain: She was mad, not bad.
The public sometimes suffers as a result of a schizophrenic's
preoccupations. In the United States, Theodore Kaczynski, the Unabomber, produced many
victims. His family had searched for help but to no avail. When his manifesto appeared in
The New York Times, his family immediately recognized it as that of their relative. They
had the onerous task of leading the authorities to the Montana cabin where Kaczynski had
led a solitary existence. After the trial, they turned over the
reward money to help the mentally ill. Their pain continues; Kaczynski remains without
insight and refuses treatment in prison. In the case of the man who shot Ottawa
sportscaster Brian Smith, there was ample warning that he was a time-bomb waiting to go
Sheila Deighton's family got help only after her mentally ill
spouse shot their mentally ill son. Her husband Alistair's paranoid schizophrenia had
never been diagnosed, though the family had cried out for help. I have met Alistair. He is
now quite sane, as he responded well to medication. After this preventable disaster, the
family now has all the help they need, but they have unfortunately lost
People are driven to having a mentally ill relative charged with a
crime to get help. Imagine how dangerous this can be if attempting to get help by this
route fails. Out of concern for the public and their loved one, families gamble on their
own safety. And there is another risk: Their loved one may take off and wander the
country, whereabouts unknown.
Some schizophrenics get the help they need after being charged with a
crime, and they usually respond well to treatment. Schizophrenics who have gone this route
often end up with a stabilized illness and a much better quality of life. But help is not
quick by this method. Many wait months in jail before a hospital bed can be made
It is a myth that the seriously mentally ill are no more dangerous than
the general public. Untreated schizophrenia and manic depression are often dangerous when
the illness is untreated, or when the patient is in the height of an episode. In addition,
schizophrenia combined with street drugs or alcohol can be explosive.
Those who argue that schizophrenia is not dangerous are simply trying to reduce the stigma
towards the mentally ill. In doing so, they are in cahoots with the civil libertarians who
believe that you wait for a violent event before intervening.
Patients do not forget what went on when they were sick. They
must live with the results of their actions. Most of their violence comes out of their
paranoia or from hallucinations. Families are often the victims. Yet we are beginning to
hear planners talk about the concept of managing a psychosis in the home. Proper
professional care must be demanded. The "home hospital" concept is ludicrous. In
reality, families would be further imprisoned in their own homes.
Forty per cent of schizophrenics attempt suicide at some
time, and about 10 per cent succeed. One wonders whether the death certificates record:
"Died as a result of untreated schizophrenia." I suspect that this is another
area of silence.
Talking about violence risks increasing discrimination towards the
mentally ill, but not talking about violence minimizes their special needs when their
illness forces them out of control. This is a classic "Catch 22." By
hiding schizophrenia, we become accomplices. We make it a crime to be ill.
Fads and myths cloud understanding 9th December 1998
Schizophrenia is the same disease the world over, yet developing
countries cope with it differently. I learned a lot about this at the World Psycho-Social
Conference in Germany this year. In India, the family is not blamed for causing the
illness. It is considered a matter of fate. The extended family system in India helps
families share the burden, but as India moves rapidly towards a smaller family structure,
it is feared that the mentally ill will suffer the same plight as in the West.
In China, there is the problem of saving face. Much is done by barter,
but shame prevents families from bartering care for their relatives. A few more privileged
families manage to get relief from caregiving by bartering goods.
Unlike in the West, however, China and India have not had to correct
the legacies left by fads that have had such a destructive influence on Western psychiatry
in the middle of this century. Terms such as the "schizophrogenic" mother (the
refrigerator mother) were coined, suggesting that mothers were to blame for their children
"going mad." This was a terrible period for mothers of the seriously mentally
ill. It was the unkindest cut of all.
This was the period in which I worked as a nurse. I remember one
wretched mother visiting her daughter who was so ill she spent most of her time in the
padded room. How could we be so insensitive and naive to even think that her mother would
have the power to cause such a terrible illness?
Freud and his colleagues added to the confusion. Although Freud never
actually claimed that psychoanalysis could cure schizophrenia, psychoanalysts nevertheless
got into the act. Using psychoanalysis to "handle" schizophrenia is like hitting
an already wounded family with a 10-ton truck.
Germany is still heavily influenced by therapy of the Jungian school. At a
recent conference in Hamburg, a German whose wife had schizophrenia told me how annoyed he
had been when a family new to his support group and new to the illness was referred to a
Jungian analyst. The family had taken it as a good sign that their teenager had at last
shown some emotion. He had burst into tears. The young man was probably totally
overwhelmed by the therapy. A more destructive approach to his illness I can't imagine.
Medicine and gentle encouragement was what were needed.
Though most doctors have accepted intellectually that
schizophrenia is indeed a brain disease, old ideas die hard. Fingers are still pointed at
families. How else can one explain why physicians fail to serve patients in an emergency?
Where else in medicine do you hear the words "family therapy?" The family's
members are not ill. They are simply in need of information. With diabetes, it would
instead be more appropriately termed: "family education."
To make matters worse, we have had medical people such as Dr. Thomas
Szasz, who has had much influence for decades, claiming that mental illness does not
exist. Another confused physician, Dr. R.D Laing, insisted that schizophrenia was simply a
healthy reaction to a mad world. Despite their profoundly dangerous views, they were both
guest speakers at Queen's University.
Szasz, now an elderly man, was invited by the medical students four
years ago. A huge crowd turned out to hear him. Szasz must have made millions out of his
book The Myth of Mental Illness. I myself bought a copy in 1962. In 1994, I
challenged Szasz as he played word games with a somewhat captive, but supposedly
open-minded, university audience. A student yelled at me: "Sit down lady. Do you have
a problem?" There was a big problem. I was utterly dismayed that Szasz held such sway
with the crowd, given that the verdict on schizophrenia was clearly in. Medical science
has shown that schizophrenia is a brain disease.
Szasz holds that schizophrenics really know what they are doing and
that they are simply acting. He views them as deviant and believes that they should have
liberty until they engage in criminal activity, and then they must be punished. But
prison, of course, does not make them well. He refuses to acknowledge that flawed biology
is the culprit.
Perhaps the most painful moment for families during the lecture was
when Szasz ridiculed a fraternal twin whose brother was very ill with schizophrenia by
arrogantly employing more word games. A junior member of the Department of Psychiatry
challenged Szasz, only to receive the same treatment.
Dr. R.D. Laing came to Queen's around 1980 to explain how
schizophrenia was really an adaptive process in reaction to a perplexing world. He packed
Grant Hall, whereupon he railed against the mad world. He appeared flushed by his own
success. A classic case of denial perhaps: Laing had a child suffering from schizophrenia.
In the West, we have easier access to the tools for treating
mental illness, yet we have more impediments to treatment: quackery, the libertarian
influence, the present Mental Health Act, inadequate follow-up care, too few psychiatrists
tending the seriously mentally ill, and a critical reduction in properly trained
We must stop blaming families 10th December 1998
There is relief from anguish in action. But what is a family to do when there
is so much silence surrounding schizophrenia? It is often a year or more into the illness
before a family seeks help. Sometimes the doctor won't give a diagnosis and often won't
allow the family to give information.
Families almost always bear most of the responsibility, but are
given little information. Some families have been scolded about using the word
"schizophrenia." "Don't you go putting labels on your relative," say
some doctors. How can families possibly gain access to honest help with such attitudes?
Would a physician say to families, "Don't use the word 'diabetes'?" Families
need to know what they are dealing with.
Most of the families that seek help from the Schizophrenia Society have
nowhere else to turn. They need help fast. Many have already tried other avenues. Some
feel that they are at their wit's end. But as families care the most for their loved one,
with support they can move mountains. Many families have been deeply hurt by professional
health-care workers, and valuable time is lost when families are directed towards the
wrong kind of help.
Despite the hurdles, few families give up the struggle to get help. Families
are often surprised when they find themselves among very normal families coping with the
same illness and its bizarre symptoms.
In general, the higher the professional status of the family, the
slower they are to reach out for help. This is a pity because these families have more
clout, but they may also have more to lose. Some families stay in denial longer and try to
rationalize the behaviour of their ill relative. Families often feel guilt for their
Families with money can sometimes hide schizophrenia longer. A case in
point was Rosemary Kennedy, President John F. Kennedy's sister. After Rosemary's lobotomy
for her mental illness, her family rallied to the cause of mental retardation (not to that
of schizophrenia). But high-profile families seldom hide when they have dealt with
schizophrenia before. They get help fast.
But all families are faced with same symptoms of the disease. The rich
can, of course, purchase the very best medicines, if they can access a well-informed
doctor. There are some excellent physicians working with the seriously mentally ill, but
they are all too few.
There are reasons to hide the illness. Families lose their network of
friends and sometimes can't tell their extended family. There is so much pain. And yet the
quicker they get everybody on board, the better it is for the patient.
But there is the treatment catch:
1) Everyone has the right to refuse treatment.
2) The more seriously ill people are with schizophrenia, the less they are aware that they
are ill, so if they are very ill, they refuse treatment for an illness that they do not
believe they have.
3) Schizophrenics who are willing to be treated are aware of their illness and are
therefore considered less ill and not yet in need of treatment. As a result, they become
more ill and eventually refuse treatment.
This is a terrible Catch-22.
We must stop blaming families because often they are constrained
by the sick person's wishes. They are powerless to get their relative off the street.
Inadequate mental-health legislation ties their hands. Community treatment orders that
would help patients stay on their medicine do not exist in Ontario.
More public education does benefit families. Hopefully, in the future
families will not lose half their friends when they reveal that a loved one has
schizophrenia. In the past, there have been enormous drawbacks to being open about
schizophrenia. The stigma associated with schizophrenia has engulfed the whole family,
including the patient.
There are other reasons for keeping quiet. Families fear their
loved one when the illness is not treated. In addition, siblings fear that they will
become ill. Sometimes they confuse the behaviour of their ill teenage brother or sister as
acting out. In particular, a twin who is not ill will be anxious about becoming ill. For
identical twins, this is a real concern. Well children of a parent who has schizophrenia
are often very traumatized. Some have actually done the parenting for their younger
Schizophrenia is the most serious of the mental illnesses.
Schizophrenics have been robbed of so much. I frequently marvel at their ability to smile
and joke on their better days when their illness is under control and their brains are
allowing them to express themselves. Schizophrenics are demanding when they are ill. We
might behave much worse in their circumstances. Unless we have schizophrenia, it is
impossible to put ourselves in their shoes.
Doctors and allied healthcare workers who suggest that the family
administer tough love should be asked: "Would you?" Remind them that the system
may allow the seriously mentally ill to slip through the ever-widening cracks, but that
families will fight not to let that happen.
About 15 years ago, a kind man visiting from England gave the Ontario
Friends of Schizophrenics good advice. He was completely deaf and relayed his message
using a sophisticated hearing aid. His son was working in Europe for the Common Market
when he became psychotic. He was thrown into hospital and then abruptly released with
little clothing. He then walked over the mountains in the middle of winter and was
The man said: "Don't let professionals order you to let go. My son
is alive because of my wife and me. Until professionals do what is humane for
schizophrenics, you must be there for them." Later, his son went on to live a
fairly independent life and was a contributing member of society despite his disability.
His other son, a medical doctor, told him that he must begin to educate the professionals
and that was what he then did. And so must you. Schizophrenia is no myth. It is
real. Let any family or patient show you.
Give disease's victims a human face 11th December 1998
More and more of the mentally ill are ending up on our streets. Many
families do not even know where their ill relatives are. Many schizophrenics sleep on the
streets or in doorways. They have slipped through the ever-widening cracks of a poorly
co-ordinated system. They receive no medical care whatsoever.
This is a common occurrence in the big cities, but it also
happens in Kingston. Living rough or in crowded hostels and eating poorly are sure recipes
for contracting tuberculosis. Schizophrenics are often taken advantage of. They may easily
be seduced into using street drugs. There are many serious public health risks for them.
The Schizophrenia Society has rescued many ill people, only to see them slip out of the
system again. We have seen families burn out trying to access care.
A person who suffers from schizophrenia needs a lot more than a roof
over his or her head. In fact, many have been given a roof over their heads but later get
evicted because their untreated symptoms and bizarre behaviours make them difficult
neighbours. Some have screamed all night or have pinned threatening messages to public
notice boards. The ill person cannot be blamed for his or her behaviour. Some who actually
have insight but are undergoing an episode have appealed to be admitted into hospital, but
have been turned away.
Ryandale, Kingston's home for the homeless, will not take a
person who is in a state of psychosis. It is too disruptive for their other clients. It is
easy to understand why they would not take those who are psychotic, but what is an
untreated mentally ill person to do in winter?
Crisis services in Kingston respond only to the wishes of the client.
Though they will take calls from families seeking help, they are still reluctant to step
in when the client is refusing help. They say it is a matter of choice. This is very
strange behaviour on the part of the crisis service if it truly understands that a person
can be trapped inside the symptoms of his or her illness. Only the Salvation Army will
step into the breach, and its resources are limited.
Persons in a diabetic crisis can be quite obstreperous and
antagonistic to treatment, but it is recognized that their behaviour is a result of an
insulin imbalance. The helping professions immediately step in with life-saving treatment,
to prevent further deterioration. But with schizophrenia, the same principles seem not to
apply. Publicly funded services that claim to serve the seriously mentally ill should be
required to help in a crisis. Schizophrenics are in crisis because of a neuro-transmitter
We hear talk of two mental health acts, one mythical and one
real. But, however well the present act is interpreted and implemented, it still fails to
meet the needs of some of the seriously mentally ill. Many professionals blame the Mental
Health Act for not being able to provide needed care for seriously mentally ill people,
but the bottom line is that governments feel that they can cut hospitalization time for
the seriously mentally ill by promising to redirect funding to the community. The service
providers are sold a bill of goods that suggests that programs in the community will
effectively replace most hospital services. Beds then are cut gradually but brutally. Ill
people are forced out of hospital earlier than is good for them in order to make room for
There's another twist. Some difficult-to-handle patients are
rediagnosed as suffering from behaviour disorders, even though their problem is, and has
been, primarily schizophrenia, according to years of hospital notes. By rediagnosing
patients in this way, health care workers can blame the victim for being awkward.
Some doctors get upset when a psychotic patient fires them. They
should remember that the family is always being fired and rehired. Families often receive
middle-of-the-night phone calls from another province. They are asked to send money to an
ill family member, but when the parent or sibling asks where the son or sister is, the son
or sister is too ill, paranoid and fearful to say where he or she is. These phone calls
give a glimpse of how helpless the sufferer is.
Psychiatrists can avoid serving the most seriously mentally ill
if they blame the lawmakers. Doctors are blaming the lawyers, while the lawyers are
blaming the doctors. The family grapples for help between the two and the patient fails to
get early interventions. Everyone is blaming everyone else and the families are left to
put up with these meaningless squabbles. Meanwhile, the patient deteriorates because no
one will take responsibility.
While it is recognized as unethical to send away people who have broken
limbs or are bleeding to death, those with broken brains seldom are given the same degree
of respect. In 1998, it is known that schizophrenia is one of the worst medical
conditions, yet time and time again, seriously mentally ill people in crisis are released
from hospital emergency rooms and psychiatric wards without help.
For the most part, doctors who have respect for their patients beyond
their illnesses work wonders. They have empathy and take the rough with the smooth. They
earn the trust of their patients. Finding the right medication takes time, knowledge and
patience. Many of these doctors do not have access to hospital beds. Unfortunately,
revolving-door patients never stay with the same doctor long enough to get help.
Not only is it cost-effective to act promptly, it is above all a matter
of ethics that seriously mentally ill people be given the health care that they need. To
hide behind a bunch of excuses is not humane. (Our pets get more help.) We should
recognize that schizophrenics need a lot of health care dollars up front in order to
succeed against their illness. All the burden of caring should not be left to families.
Family members want to be involved, but they should not have to be the case manager, the
druggist, the housekeeper, the landlord and the crisis worker. Many family members
continue in these demanding roles until they die.
A diagnosis of schizophrenia still brings with it a lot of
discrimination. So once did AIDS, epilepsy and numerous other afflictions. Cancer used to
be whispered about and diabetes was never mentioned because, before insulin was
discovered, this disease meant certain death. And so what is it that turns schizophrenics
into such pariahs? It is fear.
It is time to break the conspiracy of silence surrounding schizophrenia
and give its victims a human face. Its time to make sure that those who suffer from
schizophrenia have somewhere to go to get the health care that they deserve and need.
Fix Kingston's mental health system 12th December 1998
If I were to grade the Kingston system of care for the seriously
mentally ill, it would get a failing grade. Some individual professionals would get an A,
but the system is a mess.
The major problems are quite evident when one helps a family try
to gain admission for their loved one through hospital emergency departments. Some wait
long hours to be seen or referred to a psychiatrist. Some are refused admission without
ever having seen a psychiatrist or without information having been taken from the family.
Many patients and families have told me appalling stories of what has
been said to them by emergency room staff members. I believe them; I've been there.
Patients in a psychotic state are not deaf: they can hear callous and glib remarks.
Emergency room staff must be better trained to serve the seriously mental ill.
A major psychiatric emergency is every bit as serious as a cardiac one.
But broken brains seem not to count. When a family doctor refers a patient on a Form 1
under the Mental Health Act, or a family proceeds to hospital under a Justice of Peace
Order, this is an emergency. The patient must be taken to hospital, either by the police
or the family, for a 72-hour assessment. Sometimes it is the only chance that the family
has to begin to turn the illness around.
Every practising physician should witness a family proceeding under a
Justice of Peace Order. It is the most agonizing thing that a family is called upon to do
and, if the hospital fails the patient, it is devastating. A man I know was not admitted
on the first attempt. Ten years later, a subsequent Form 1 was successful; the disease was
much more chronic by then. Some doctors say they don't do Form 1 patients. That is like a
surgeon saying he doesn't do sutures.
The mental health system is now a disaster zone for those in the early
phases of a major mental illness. New hospital buildings and services in the community are
only as good as the people who work in them. Queen's University's medical school has an
obligation to teach the finest skills and up-to-date knowledge about schizophrenia.
Too few psychiatrists are caring for the seriously mentally ill.
Psychiatrists drift off to administer to the "worried well." There has been much
confusion in the past between the demands of the mental health movement and the needs of
those who suffer from neurobiological diseases of the brain. For the last two decades,
government reports have stated clearly that major mental illness should
be the first priority. It has just not happened.
Job stress, marital problems, grief and other painful traumas cannot be
compared to the horrendous turmoil that is brought about by a major mental illness.
Services drift towards the worried well because they are able to ask for help. Life's
troubles often put us in need of support, but for the most part our troubles pass and do
not require the expensive services of psychiatrists. Major mental illness does not go away
by itself. It requires treatment.
General hospital psychiatric wards have often failed schizophrenics
abysmally. Whether schizophrenia is in a very chronic stage, or whether it is newly
diagnosed, it is serious. The system does not scrimp on serving those with leukemia. It
should not scrimp for those with schizophrenia. Of course, if the system avoids
doing assessments and making proper diagnoses, it can delude itself that it can manage
without hospitals altogether.
The rush to push the mentally ill out of hospitals is already proving to be a
disaster. More and more of them are ending up, by default, in our jails. When major
mental illness goes untreated, there are major consequences. There must be
transitional funding to develop services being placed in the community, in order not to
neglect those who need hospitalization now. There is a paradox: we are making people
sicker with our present policies. What is more, if we gave the care and dollars at the
beginning of the illness, there would be less demand for chronic care later.
Psychiatry has come a long way from the days of insulin coma
treatments, exposure to extreme temperatures, lobotomies, ice picks through eye sockets,
and other questionable forms of treatment (including psychoanalysis), but there is still
much room for improvement. It is high time for psychiatrists to speak out together and
declare what is "best practice" for the treatment for schizophrenia. It is
essential that they speak out about the current problems. Heart surgeons are quick to
demand cardiac "cath labs." Psychiatrists must take a leaf out of their book.
Grumbling about the failures of the Mental Health Act is no substitute
for action. Psychiatrists must insist on proper lengths of stay for their sick patients.
If they do not immediately speak out, there will be many people who will be too
chronically ill to avail themselves of better treatments in the future. The Health
Services Restructuring Commission's bed proposal for Kingston (74 chronic mental illness
beds, down from 225, and 35 acute care beds, down from 47) is sheer lunacy.
Muddling through while more people slip through the cracks is irresponsible.
With the closure of the Kingston Psychiatric Hospital, mental illness
may not continue to have its protected funding envelope from the Ministry of Health.
Kingston is now short of psychiatrists. If the Alternative Funding Plan for Queen's
medical school physicians is problematic in terms of allowing the medical school to
recruit new psychiatrists, then Queen's must review that plan. This may be crucial, given
that KPH will no longer exist, and that what was once a government recruiting system for
psychiatrists will now be left to the two local governing bodies, St. Mary's of the Lake
and Kingston General hospitals.
A decade ago, a Kingston psychiatrist told the Ontario Friends of
Schizophrenics: "We don't need more research. We know how to treat
schizophrenia." With all due respect to the good doctor, schizophrenics deserve
to have better treatments.
People with other kinds of diseases can expect continual innovation. Kingston's medical
school must attract basic scientists and clinicians who are interested in neurobiological
research to advance the cause of schizophrenia. Not all psychiatrists must be researchers,
but they must be able to deliver state-of-the-art treatments. Virtual brain slice
technologists should not, however, supplant psychiatrists who have a good doctor-patient
The Ontario Mental Health Act must be revised. In addition to this, the
government must address the issue of community treatment orders for those who are unable
to appreciate the nature of their illness and so go off their medication. Some mental
health groups (well funded by governments) have used loaded words to refer to this
community legislation. They say they are "leash laws," whereas the legislation
would really be a lifeline. Legislators must recognize the excruciating
suffering that goes with untreated major mental illness and act.
The Health Services Restructuring Commission's site proposal could be a
good thing for sufferersof major mental illness. As the hospital system moves onto the
King Street West site in the next century, we could have the most superlative
neuro-psychiatric facility in Ontario. Kingston must be in a position to innovate.
New diagnostic tests will be inevitable as science unlocks the secrets of biological
psychiatric disorders. In the future, it may well be possible to diagnose and treat
earlier, thus avoiding the damaging effects of the psychotic breakdown. Neuropsychiatry
and neurology would be the ideal first inpatient units on a new site.
There is a golden opportunity to get it right for the seriously
mentally ill, but will it happen? It might, if there is a serious commitment by the
provincial government, by Kingston's Healthcare 2000, and by local planners. Schizophrenia
could receive the finest calibre of care, on a par with other health care areas.
Heart surgery and care are not done on the kitchen table. Psychiatrists must demand a
designed treatment facility to assist recovery. A safe, quiet environment, privacy and
room to pace and run tests, will be essential.
Two per cent of the population suffers from schizophrenia and
manic depression. They do not have a monopoly on pain, but it is high time for them to
have their fair share of the fiscal pie.
- Ian Chovil's Story, http://www.mgl.ca/~chovil/
- Madness in the Streets: How Psychiatry and the Law Abandoned the Mentally Ill, by Rael
Isaac and Virginia Armat
- Surviving Schizophrenia: A Manual for Families, Consumers and Providers, by Dr. E.
- Nowhere to go, by Dr. E. Fuller Torrey
- Schizophrenia Society of Ontario's Family to Family Series. 549-2485 or (416) 449- 6830
- World Schizophrenia Fellowship, wsf@.inforamp.net
- Sanetalk U.K., Cityside House, 40 Adler St., London E1, England
- Schizophrenia Straight Talk for Families and Friends, by Maryellen Walsh
- Conquering Schizophrenia: A Father, His Son, and a Medical Breakthrough, by Peter Wyden
Editorial by Steve Lukits 11th December 1998
Do not forsake the mentally ill
Crushed by feelings and thoughts he fears he cannot bear, an old man
"O! let me not be mad, not mad, sweet heaven; Keep me in temper; I would not be
This agonizing by Shakespeare's King Lear strikes a chord in every person heavily beset by
life's troubles, people who fear losing it, going crazy, becoming mad.
After surviving these traumas and regaining confidence in our
sanity, the terrible fiction of madness is bearable and, staged as a great drama, yields
insights into our human condition. Lear recovers and learns about himself and his world,
even if that tragic knowledge leads to his death. We leave the theatre and go home sadder
When people suffer from an actual mental illness, it cannot be
left behind at the theatre's door. A brain disease like schizophrenia is the daily reality
of the sufferer's life, of the person's family and within the community where they live.
None of us can hide from the reality that people with mental illnesses live among us. That
is the message in Patricia Forsdyke's brave and eloquent series of articles,
Schizophrenia: Breaking the Silence, published on our Forum page throughout this week.
Forsdyke has broken the silence about a mental illness people are
afraid to talk about. She also has a special message for us in Kingston. We have a host of
public medical and social organizations in our community focusing on mental illness. With
the re-organization of our hospitals and local health care services, we have a special
opportunity to re-evaluate care for the mentally ill. What we as a community, and
particularly our health care leaders, must do to make that happen is the subject of
Forsdyke's final article on tomorrow's Forum page [see above].
Helping the mentally ill people is not only a matter of social conscience and
compassion, but of public safety. Just this week, Herbert Cheong, who was suffering from
schizophrenia, pleaded guilty and was convicted of second-degree murder in Toronto for
pushing a young woman in front of a subway train.
In Kingston on May 31, David Schlaht, who was afflicted by the same mental
illness, went crazy, hijacked a cab and died when city police tried to defuse the
dangerous situation. Schlaht had led a quiet and invisible life in Kingston for 10 years.
He had no known friends, lived alone in his apartment and attended a weekly out-patient
support group provided by Kingston Psychiatric Hospital. On the day he died, he was
desperately trying to get help because he feared his
medication was not working.
The demons of schizophrenia tormented him and led to his death. Police were
cleared of responsibility by the province's Special Investigation Unit. But we have yet to
debate our community's responsibility for helping mentally ill people like David Schlaht.
To begin, we must demand that police and other emergency response
professionals be properly trained. When Kingston Psychiatric Hospital closes, we must
insist that adequate hospital and community services are in place. That will only happen
if we heed advocates for the mentally ill, like Patricia Forsdyke, as well as we do groups
asking for improvements to other areas of health care.
We must break the silence about mental illness by pledging to make
Kingston the best place in Ontario for helping people afflicted with this disease. We must
do all we can to keep them from going mad.