By a Nova Scotia Mother

As a parent to an adult child with psychotic illness, I found the recent Globe and Mail offering “Schizophrenia: Out of the shadows with a new emphasis on recovery and individuals reaching their potential”, incredibly misleading and disappointing. For me and other parents like me, we are keenly aware of the limitations of some of the brightly heralded triumphs enthusiastically proclaimed within this article by Schizophrenia Society of Canada CEO, Dr. Chris Summerville. The general public – not so much, and therein lies the problem.

This disappointment stems from the reality that Chris has a responsibility and obligation to speak truth to power. He has missed, or rather, thrown away, an incredible opportunity to educate Canadians with little exposure or understanding of psychotic illnesses, to the intensive challenges and impacts that they create for those who suffer with them as well as their families.

He appropriately acknowledges the early history of the Schizophrenia Society of Canada (SSC) and the families who worked incredibly hard to create a national organization that could advocate for the rights of those family members with severe mental illnesses. At one time it used to be families who advocated for their loved one’s care and treatment which made sense because it was most often the families who would help care for and support their loved ones with these illnesses. Families still retain similar caregiving roles today, but now their voices have largely been diminished and extinguished by the “family blaming” tendencies of the psychiatric and consumer survivor movements.

The reality is that while Chris has heaped glowing praise on these families within the article, historically he has treated families who support loved ones with psychotic illnesses quite differently.

For example, in 2012 Chris was responsible for planning a Mental Health Commission of Canada Conference (MHCC). This conference hosted various speakers who throughout the course of several different presentations, engaged in family blaming; a commonly held view within the psychiatric and consumer survivor movements. In an unrelated instance, and taken from Susan Inman’s article “The New Mental Illness Stigma? Offering Support” : “In an interview in Canadian Christianity, he (Chris) spoke of families being the obstacle to people getting treatment because they don’t want to let out the “family secret.”

Taken from the Globe and Mail article, Chris goes on to say: “The growth of peer-support networks for families and individuals with mental illnesses and the strengthening of the person-centred, recovery-oriented model of treatment have helped drive positive change in mental health services.”

When he says a “person centred recovery orientated model of treatment” he’s referring to patient-led and directed treatment. It encourages patients to choose what they think works best for them. It seems an increasingly popular cultural norm to reject the medical model in favour of holistic, social, and spiritually based models, AKA the anti-psychiatry movement.

I would argue that the person-centred recovery-oriented model of treatment has helped drive positive change in mental health services. It would depend on who you ask, I suppose? It also very much depends on whether the individual with psychotic illness has a “lack of insight”, because in that instance, treatment is almost always refused. “Lack of insight” is the inability for an individual to understand that they are ill. “It is estimated that 50-90% of patients with schizophrenia and 40% of patients with bipolar disorder demonstrate anosognosia or severe lack of insight.” It is caused by cognitive damage in the frontal parietal lobe and for some, it is a feature of their illness.

Ask any family member with a loved one who is severely mentally ill, has lack of insight and remains untreated, how much they like the “person centred recovery-orientated model of treatment” and I’m pretty sure you’ll end up with a very different answer.

It used to be the case that those who met the criteria of a province’s mental health legislation and who were a threat to self or others would be involuntarily hospitalized, and in some provinces, treated. This was done to keep the individual or others safe until such time that they could attain stability and be released.

In today’s climate of reduced psychiatric inpatient treatment beds, individuals who meet those criteria are not guaranteed to be involuntarily admitted if there isn’t a bed to put them in. Only the sickest get care. This leads to those who are still significantly ill being released into homelessness. Increased rates of incarceration as a direct result of not being able to “choose care” due to illness and lack of insight is also a very real consequence of the person-centered recovery orientated model of care. Still a fan?

As for peer support? What Chris neglects to mention, is far more relevant than what he does mention. Like the fact that the peer support networks for individuals with mental illnesses he’s referring to have no formalized training for severe mental illnesses (SMIs) like schizophrenia, bipolar disorder, or major depressive disorder. Although Peer Supporters need to be in recovery from a mental illness themselves to be peer supporters, there -are no mechanisms in place to keep them safe in the event they are triggered on one of their many calls. Additionally, there is no way of knowing if a peer supporter who may have had a negative experience in their own mental health treatment may let that colour their own biases and responses about medication and hospitalization to those who may really need that type of support.

Of course, peer support is not inherently all good or all bad. Like most things in life – it depends on the context. Peer supporters can be embedded in ACT teams (assertive community treatment) where they work alongside mental health professionals in a team environment. In this environment their assistance and experience can be invaluable. More than that, peer supporters have the potential of being a fantastic support and resource within the mental health system – IF they have current and relevant training on psychotic illnesses.

I agree with Chris’ thoughts on early psychosis treatment, IE: “the earlier you identify early psychosis, and the earlier you intervene and provide treatment, the less likely the individual will develop full-blown schizophrenia. The result is you have better outcomes because if you can prevent future psychotic breaks, there will be less damage to the brain and its functions.” But again, this message is delivered in a way that provides the reader with only part of the picture, and that is my main problem with it.

For instance, does it matter that we increase our access to, or numbers of early intervention spaces if people are not going to choose care? Remember a little something called the “person centred recovery orientated model of treatment” and “lack of insight”?

Also, since teenagers are the demographic most likely to suffer from early psychosis there is the “mature minor” designation most provinces have in place that must be taken into consideration. Each province has different criteria but here in Nova Scotia, a mature minor is deemed as: “a minor who can understand and appreciate the nature and consequences of his/her decision and its alternatives is able to give a valid consent regardless of age. In most cases, children entitled to make personal decisions in Nova Scotia will have reached adolescence. As, in Nova Scotia there is no set age a child must reach before he/she is able to provide consent for treatment, assessment or release of information, the psychologist must thus determine, on a case-by-case basis, whether a child is capable of making decisions in his/her best interest.”

This means a young teenager who may present to a family DR or ER physician (who may not be well versed in treating or diagnosing mental illness, AND who may miss key indicators that signify them), can potentially, if they meet the mature minor criteria, refuse treatment or to share any medical information with their parents.

This, I might add, can happen at times when it is crucial for early intervention and treatment. Delaying, or not treating can mean chronic severe mental illness down the road that is medication resistant. How would you like “person centred recovery orientated model of treatment”, if it were your teen presenting to an ER, meeting the criteria of a mature minor, having undetected “lack of awareness” (doesn’t believe they are ill or need treatment), refusing treatment and who insists that their parents not be notified? Not so much now, I’m guessing.

Fast forward ten years and you may have a loved one with a severely entrenched chronic mental illness that they are unaware of (lack of insight) and that wreaks havoc within their own life and the lives of everyone who loves them. It continues to be a sad reality for many families – mine included, because it is very avoidable, with early access to treatment and care.