Barbara Howard's* daughter is in the psychiatric unit at Vancouver General Hospital again.
It doesn't make sense since her daughter's schizoaffective disorder responds well to anti-psychotic medication; the problem is that she has never had any insight into her illness.
After years of chaos following the onset of her illness, the family finally realized their daughter might be able to be part of BC's Extended Release program, a program designed for situations just like this -- people with no insight into their illness, who keep recycling back into psychosis and into expensive acute psychiatric beds, and who are released with the stipulation that they go to their local mental health service provider to receive the anti-psychotic medications they need.
This program, which involved receiving an injectable anti-psychotic medication every two weeks, worked so well for the daughter for several years that she built up a full life and functioned comfortably. She was able to maintain the condo her parents bought for her, had a full-time job as a legal assistant, and made the art she loves.
Unfortunately, she deeply resented the meds she was sure she didn't need. For several years, the mental health review panel that looked at her annual request to be removed from the Extended Release program considered the six earlier hospitalizations that occurred when she had stopped taking medications, and rejected her request.
These review panels consist of a medical practitioner, a lawyer, and a member of the community and usually help ensure that ill people get the treatment they need. However, in June 2010, the beautiful, articulate young woman, with evidence of her high-functioning life, won her case to be removed from Extended Release. The strong warnings submitted from her parents and the treating psychiatrist were ignored. They had let the panel know that the daughter had never been willing to take oral medication.
Her desperate mother, a retired news reporter with considerable knowledge of the mental health system, persevered until she was able to find out the reasoning behind the panel's decision. The panel had decided that, since her parents are so supportive, they could help out if anything went wrong. Besides, they argued, the daughter had "presented well" and assured the panel that she planned to continue taking her medication.
And maybe the daughter did take her medication for a few weeks, but soon the old pattern re-emerged. Work became too difficult, and she stopped going. She saw the family, whose support she'd previously enjoyed, as having sinister plots, and she stopped speaking to them. It would have been hard to hear them anyway because her numerous voices once again seized control, keeping her locked in her apartment, gradually starving herself.
The family had no choice, since they didn't want their daughter to die, so they called in emergency services. A traumatic intervention with police and ambulance attendants ensued forcing their deeply paranoid daughter to do what she didn't want. Fortunately, after a few weeks in the hospital she was restabilized on the medications she still didn't understand she needed.
Their daughter returned to her condo and began to slowly rebuild the life that had fallen apart. The parents, furious at the ineptitude of the mental health system, could at least know that everyone involved had learned an important lesson, even if it had to be at their daughter's expense.
They were very surprised last year when they learned that, after a year of stability, her community mental health team had decided, without consulting them, to once again release their daughter from mandatory treatment.
Once again, the parents were helpless as they watched their daughter slowly descend into the horrors of her madness over a period of months. With this current hospitalization, however, the medication, as can happen, isn't producing the same effect. After nine weeks of being hospitalized, the daughter is still severely mentally ill. The parents now wonder where their daughter should live when she is eventually released. It's not clear that she'll be able to live independently. The parents fear that their daughter may not be able to work again. After the 2010 hospitalization, the daughter was unable to return to work and has been on disability benefits ever since; these were set up with the assistance of her parents.
Numerous groups of psychiatric-survivors and their supporters in academia adamantly oppose any involuntary treatment for people experiencing psychosis, arguing that people should always be free to choose whether or not they wish to be treated. They are working hard to spread their perspectives.
If they are successful, the Howard's daughter might not have a chance to resume the life her medications allowed her to live.
*Name changed
Please understand that I am skeptical of it for the reasons that I have given.
Please respect my right and ability to give my own reasons for thinking as I do.
Oh, and you're welcome for the academic citations.
Also you will see that I did not ask why Open Dialogue did not make front page news in North America. I did not even refer to Open Dialogue.
What I did ask was why the reduction of the occurance of schizophrenia by 90% would not have been widely publicized. Up here in Canada, same as in the USA and Britain, we have a free press in a free country and there are lots of journalists who would have been eager to publish such an amazing advancement.
And you did say the DIAGNOSIS of schizophrenia was reduced by 90%, not the OCCURANCE - which is an extremely important difference.
If the OCCURANCE has been reduced by 90%, I would like to see the particulars of that and I look forward to reading the papers to which you have provided links.
Thank you for sending the links.
I just want to clarify a couple of things:
> If you check below, I was able to let the first commenter know that I hadn't written the earlier title of this article. As soon as I saw it, I asked huffpo staff to change it. It didn't represent my ideas. t did select the current title which I think represents the focus of the article.
> The article actually isn't about my situation but about that of a friend. My daughter, as I mention in another response, has a great understanding and acceptance of her disorder; and she does want to ensure that she is never left to flounder in an untreated psychosis in the event of a future relapse. She often expresses that she is very glad to live in a time when a medication has been invented that has let her recover her mental clarity and enjoy her life again.
> It may be surprising, but my daughter is very eager for me to write the articles I write.
> My daughter is part of a community of young adults living with psychotic illnesses; this group has very good relationships with their families and know that they can count on their families for support when they need it.
Susan
Should we have a discussion about the necessity of involuntary treatment in the case of SMI? Yes, absolutely. But it should primarily be done by the people it affects, not by bystanders. And it should never include sweeping generalizations that are made to apply to all people with mental illness. Because for every mentally ill person whose life depends on medication, there is someone whose life has been ruined by medication. Therefore, those who speak out against medication and involuntary treatment should not be criticized for preventing progress. They are an important and necessary part of the conversation.
And thank you very much for changing the title of this piece. The original one -- "Why the Mentally Ill Should be Medicated -- is in and of itself a very good example of why the mental health system doesn't work. The mentally ill are not clones of each other, and one story of mental illness should not be regarded as a guidebook for how mental illness should be addressed.
There's not one quote from your daughter. It's all about you.
If someone "deeply resented" her medications, there's a reason. You don't "resent" (such an odd choice of a word) a medication just out of the blue. You never say if the medications made her feel worse (they often do, but people who are inconvenienced by "the mentally ill" rarely listen and make excuses).
In the end, it SHOULD be your daughter's choice. Until she gives her reasons why she doesn't want to take the medications, your story is full of holes. It's so obviously all about you, and there isn't one ounce of compassion towards your daughter.
Need I state the obvious?
Yes - I agree that a balance is necessary. People should not receive medications they clearly don't need.
However, I fear that the balance is disappearing. My daughter, who has a lot of knowledge about psychotic illnesses, knows that her insight can vanish during a relapse. She counts on us to not leave her in an untreated psychosis but, even in cases like this, it's not certain that she'll receive the treatment she needs.
Families are the natural allies of people living with such difficult disorders. Unfortunately, they constanty confront a mental health system that puts up endless barriers to their involvement. It's good to read that you understand how families can help.
Susan
Medication is one tool in a system of many -- enforcing it upon someone should be seen as a last resort option; I don't know the magic number, but those 6 previous incidents mentioned in the article seem like a good indicator that this particular situation called for continued use of medication, and certainly the one relapse after that was more than an adequate indication that the trial run without the injections was not successful. We are all different and our chemical make-up is not the same as the guy sitting next to us on the bus -- but we are all human and we do deserve a say in our medical treatment. Finding the balance between self-care and self-harm is not easy from an outside perspective, but I have high hopes for the future.
Keep advocating, parents, your (even adult!) kids need you!
In 30-years of advocacy, I witnessed the fractured 'theories' of bureaucrats, managers and professionals' personal beliefs that were a conglomeration of social presumptions/myths that captured our imaginations before we were able to scientifically study human brains.
When I first read the latest brain research findings it suddenly cleared away the brambles that hid the truth.I thought as Leonard Cohen wrote this science was the "crack that let the light get in" on schizophrenia and related psychoses. (see The Treatment Advocacy Center).
New knowledge could not save my 20-year-old schizophrenic son who killed himself after refusing to continue his medication, leaving met with the question if appropriate and timely treatment could have saved him-- it was never available to him, no matter how often we went back for help.
Let's insist on more scientific brain research. A cure plus improved medication can only be found in labs so scientists can then replace unsuccessful treatments with science-based ones.
Science taught us that microbes caused small pox, measles, tuberculosis, Black Death plague,typhoid fever, leprosy and many other microbial diseases. It's time to put brain diseases under the same microscope.
I recommend Beasts of the Earth, co-authored by Dr.F.Torrey to learn more about human disease. There are many research possibilities.
Likewise, there is no evidence that madness is caused by "brain disease." However, there is plenty of evidence that it is often caused by societal failure.
I completely agree. I didn't pick this title and quickly alerted the staff at huffpo about the problem; they will be changing it very soon.
Susan
It of course is not an accurate portrayal for we are as diverse a demographic as "women," once also caricatured. We earn to the millions, hold every university degree, and every professional, white and blue collar job. "The" indeed.
Harold A. Maio