We Can Do Better

Urgent Innovations to Improve Mental Health Access and Care

David Goldbloom

• Publisher: Simon & Schuster
• Year: 2021
• ISBN:
  9781501184888
• Topic: Medicine
• Subtopic: Health Care Delivery

A leading psychiatrist and expert reveals important issues in mental health care today and introduces innovations to revolutionize and improve mental health for everyone. Mental health care systems are falling short and the consequences, for individuals and societies, are dire. In this urgent book, celebrated psychiatrist and mental health care advocate Dr. David Goldbloom outlines proven innovations in medicine and health care delivery that we all could benefit from today.Using fictional—but all too real—examples of people suffering from various mental illnesses, from depression to opioid addiction, and drawn from his real-life experiences in this field, Dr. Goldbloom shows barriers to care and other faults in mental health care systems. He then reveals simple, yet startlingly effective tools for improving access and treatment that can help people now—if we only had the will to share, use, and fund these (and more) brilliant innovations: -Self-referrals for faster access to care
-Apps and e-tools for treatment, rehabilitation, and self-monitoring between appointments
-Remote coaching for effectively treating common childhood problems
-Integrated youth services to improve early intervention
-Personalized care to ensure treatments don't fail patients
-Rapid-access housing for the homeless and mentally ill so they can begin a journey of careWhile technologies such as smart phones and genetic testing play a role, these innovations are about people. They address waiting times to see specialists, the lack of coordination between health care institutions, and the stigma that often comes with seeking help—even stigma among health care providers. They broaden the definition of what mental health care can even be, such as providing housing, or low-intensity training for day-to-day life.Smart, candid, personal, and persuasive, this new book is a timely call for better access to and quality of help—a roadmap to better well-being for everyone.

1 ◇◇◇◇◇ PIERRE AND ATTENTION DEFICIT HYPERACTIVITY DISORDER

INNOVATION: REMOTE COACHING

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Hold the Phone

Pierre was a rambunctious young boy, always in motion—a “whirling dervish,” his mother, Eloise, called him. His father, Stephane, recognized himself in Pierre, both with pride and a little bit of dread as he anticipated what school would be like for his son.

By the time Pierre was in grade one, what had seemed like relentless curiosity and exuberance began to clash with rules, schedules, and even learning. He struggled to stay seated in the classroom or to wait his turn when the teacher asked a question. Instead, he often disrupted the class with blurted jokes and laughter, physical restlessness, and a tendency to take things from other children. It meant frequent trips to the hallway and twice to the principal’s office. At times, as the teacher spoke to the students, Pierre seemed a million miles away, staring out the window, seemingly transfixed by a squirrel on a tree branch. When the children were asked to bring something from home for show-and-tell, Pierre frequently forgot or misplaced his items, and he tuned out when reprimanded about it.

Pierre’s teacher and his parents were worried about his ability to succeed in school and to make friends. Keeping him busy was helpful, but it didn’t always translate into keeping him engaged. The teacher suggested that Pierre’s family doctor be involved and that the parents complete one of the common questionnaires used to consider the possibility of attention deficit/hyperactivity disorder (ADHD). “That’s what they said I had,” noted his father, “and so did two of my brothers. They put us all on Ritalin. My parents said it helped.”

Stephane felt guilty that he had passed on to his son a vulnerability to a disorder that wreaked some havoc on Stephane’s own childhood. Like many people with ADHD, Stephane had outgrown the symptoms as an adult—but he had never forgotten them. He suddenly had a new appreciation for his own parents’ struggles in raising him.

The family doctor asked Pierre’s parents and teacher to complete a brief survey. They reviewed the results and noticed the overwhelming number of boxes ticked under the “very much” column describing ADHD symptoms. The doctor decided to prescribe Ritalin for Pierre and encouraged his parents to visit some ADHD websites for further information and support. “I’m afraid that’s all I can do,” she said.

Pierre took Ritalin and the effects were evident both at home and in the classroom within a couple of weeks. Pierre seemed calmer, more able to focus and sit still. He wasn’t sent to the hallway anymore for being disruptive and seemed to enjoy being part of the class more. His symptoms were certainly better, but they weren’t gone, and Eloise and Stephane felt that their son needed more than pills could provide. They wanted strategies that would help them cope better as a family, as well as skills that Pierre could use in situations that brought out the worst of his diagnosis.

But getting in to see the school psychologist or a child psychiatrist would take many months, and seeing a psychologist in private practice was beyond their means. It was hard enough for them to coordinate taking time away from their jobs in the middle of a weekday to meet with the teacher, let alone ongoing sessions with a counsellor.

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ADHD, sometimes shortened to ADD, is one of those sets of initials that people now use casually in everyday conversation as a kind of shorthand—“I’m so ADD today I can’t find my car keys.” It’s much the same with how people refer to obsessive-compulsive disorder (OCD)—“I like to keep my DVDs organized by movie genre; I know it’s so OCD of me.” Some could argue that this represents greater literacy or acceptance of mental illness, but I don’t buy it. To me, it is a trivialization of illness, a self-mocking joke that betrays a lack of awareness of just how debilitating, intrusive, and persistent the symptoms can be.

That being said, ADHD is more recognized, diagnosed, and treated than ever before, especially in adults. While some children outgrow ADHD symptoms, long-term follow-up studies show that symptoms can persist into adulthood. For adults I see who are questioning whether this explains their difficulties, the answer is: sometimes but not always. In adults, there is often a clear history of ADHD symptoms persisting since childhood, corroborated by parents and old report cards. For those adults whose symptoms developed only in their thirties, in my experience it is far more likely that their concentration and focus difficulties are aspects of a depression or anxiety disorder—or sometimes a profound dislike of the task that requires their attention.

According to the Canadian ADHD Resource Alliance (CADDRA) 2018 treatment guidelines, clinical descriptions of the behaviour patterns go back to the late 1700s and the benefits of amphetamine drugs for the symptoms were first observed in the late 1930s. So this is not simply a recent fad, despite growing recognition and treatment.

In 2014, a careful review of the previous three decades found no increase in how commonly ADHD occurred among children in community samples. This is opposed to the rise in the number of children being given the diagnosis by health professionals, which, according to the US National Institutes of Health, increased between 2003 and 2011 by 42 percent. That’s a total increase from 8 percent to 11 percent of all children.

This is a cause for concern for many: from parents to policy makers, philosophers to health care providers, ethicists to educators. People worry about overdiagnosis and overtreatment. However, few people argue that ADHD doesn’t exist. So where is the sweet spot between missing cases and overcalling them?

In Canada, while the number of cases of ADHD increased significantly between 1999 and 2012, most of the diagnoses were made by family physicians. Diagnoses of ADHD were made in 3 to 5 out of every 100 children and youth, with significant variability across provinces. And it is estimated that when the diagnosis is made, stimulant medication follows in the majority of cases.

Without a diagnostic blood or imaging test, ADHD remains a clinical diagnosis, often supported by multi-perspective questionnaires completed by teachers, parents, and the people who may have the disorder. The consequences of missing the diagnosis can include a very negative impact on school performance and in developing a social network—the principal jobs of children. On the other hand, overdiagnosis can lead to labeling that may be stigmatizing, treatment that may not be necessary or helpful, and a blind eye to other factors contributing to the way the child is functioning.

Not every person who clicks his ballpoint pen repeatedly, shifts in his chair, or tunes out has ADHD, in the same way that not everyone who burps has acid reflux and not everyone with chest pain has heart disease. But a recognizable pattern of co-occurring symptoms that are both sustained and having a negative impact on school and social performance are at the heart of the diagnosis of ADHD.

I have to admit that in the first half of my career I never used to think about this diagnosis as an adult psychiatrist. I had seen children with ADHD during my child psychiatry training but hadn’t been sufficiently curious to wonder what happens to them when they grow up. In my own dim way, I wrongly saw age eighteen as some kind of magical transformation point and didn’t ask adults about ADHD symptoms. But as public awareness has grown and online self-assessments provided by Dr. Google have proliferated, more adults are wondering whether this explains how they think and function.

That being said, the primary province of ADHD, where it is most likely to emerge and play havoc, is childhood. That’s where most of the help is needed.

Given how long it will take for Pierre to see a school psychologist or a child psychiatrist outside of the school system, it is easy to assume that simply having more such mental health experts available will solve the problem. That isn’t the case, though. We know from studies of psychiatrist supply conducted in Ontario that the problem of accessing services isn’t any better in regions with higher concentrations of these specialists, such as major urban centres, than it is in rural areas. And it’s not always the case that people need the level of expertise of those professionals—not everyone with a headache needs to see a neurologist and not everyone with high blood pressure needs to see a cardiologist. The result is a mismatch between problems and solutions.

We will never have—nor should we—enough child psychiatrists to see every young person with mental health problems and illnesses, even though we could make better use of a larger contingent of them. What we need is a greater range of services for young people of differing levels of intensity and expertise so we can match level of need with appropriate resources, including the most advanced and specialized, at the right time. In fact, that’s what we need throughout our entire mental health care system.

There is an old New Yorker cartoon of someone flailing in water and, on seeing a faithful collie barking on the banks of the river, yelling to her, “Lassie, get help!” In the next frame of the cartoon, Lassie is on her back on a chaise longue, speaking to a therapist. Funny? Sure. But to me, it says we need to broaden our reality as well as our popular cultural conception of what getting help means.

Even if a greater number of psychiatrists would improve access for people like Pierre, it wouldn’t happen overnight. It can take up to fifteen years of postsecondary education and training to launch a child psychiatrist. It’s not just a question of improving access to existing resources but also of connecting people with appropriate new resources. There are opportunities to diversify the mental health workforce, training up much more quickly people who can deliver evidence-based treatments that can effectively meet people’s needs. It means shaking up how we think about care and care providers. It means leveraging existing knowledge of innovative approaches that work. Innovation is what Pierre needs, as long as it is supported by credible evidence that the approach makes a positive difference. Oxford University Press publishes a series of books called Treatments That Work—a sobering reminder that not everything we think of as treatment has evidence to support its benefits.

Not only are wait lists long, and the costs of ongoing treatment too high for many families, but traditional services are typically available during weekday business hours, often when families have the least flexibility to get together. Children should spend their days in school; it is their ticket to chances for a better life—and better mental health—as an adult. And parents are often themselves busy with work commitments, where taking time off for appointments can be a significant challenge. Mental illnesses like ADHD can be a real barrier to the success of children and families, and so we need alternative approaches.

For Pierre’s family and so many like them, there is a need for available, affordable, accessible, evidence-based services beyond the traditional format of office- or institution-based weekday clinical practices. What many Canadian parents like Eloise and Stephane don’t know is that some of these innovative resources already exist. One such program has incredible potential to provide help for families like theirs: the Strongest Families Institute (SFI).

SFI is the brainchild of Patrick McGrath, an academic and clinical psychologist, and Patricia “Trish” Lingley-Pottie, a PhD nurse in Halifax, Nova Scotia. The origins of SFI go back forty years to when Patrick was in Ottawa dealing with children who suffered from chronic pain. He developed a technique of using coaches to help kids and their families via telephone—an early form of e-health long before smartphones, apps, and the internet. It was an academic success but an innovation failure because there was no significant uptake. Canada is sometimes called the land of pilot projects, where great ideas are generated and validated but not scaled up—whether due to lack of political will, funding, technology, or vision to transform the local to the national.

Nevertheless, Patrick knew that many people lived far away from specialized treatment resources or could not meet the demands of daytime weekday appointments that disrupted school for the child and work for the parents. And many more children struggle with emotional and behavioural problems than with chronic pain. So he shifted his clinical focus from pain to mental health, and not long after, SFI was born.

The goal of SFI, and similar programs that would follow, is to help children with symptoms of ADHD, disruptive behaviour, anxiety disorder, and persistent bedwetting by teaching them, and their families, strategies and skills for dealing with specific situations, thoughts, and feelings that triggered their symptoms. When he designed the program, Patrick carefully reviewed the scientific evidence to support those strategies and created manuals that specially trained coaches could use when speaking with families over the phone.

Coaches encourage parents to pay heed to the times when their child is being attentive, making sure positive behaviours at home and in school are reinforced through reward systems. They can help parents break down tasks into specific, manageable goals. And they can teach parents how to use problem-solving strategies that include the child in the plan, that help the child with focus and emotion regulation. The manuals were effectively scripts, and they included prompts to remind the coaches to use role-playing and problem-solving skills with children and parents. The program also provided handbooks for children and parents and complementary audio and video products that demonstrate the skills in action.

Each session between the coach and the family is conducted over the phone. It starts with a conversation in which the coach uses a series of screening tools to identify what the problem areas are and, more important, how to help deal with them. To minimize bias, screening is done by a separate department—evaluation assistants—using validated scales such as the Brief Child and Family Phone Interview (developed by academics at McMaster University more than a decade ago) and the Strengths and Difficulties Questionnaire (well established internationally as a screening tool). All the resulting data is entered into a care plan page and a problem identification dashboard on a computer program that families can access.

The telephone sessions are held in the evenings, when families are most often available—there are no office visits, no travel, and no delays. Of course, in the context of pandemic isolation (as of this writing), families have become even more available together. Coaches also aim to deliver written results in ways that families will understand, preferring short, graphic-heavy reports over lengthy narratives that too often cause patients’ eyes to glaze over.

It’s important to recognize that SFI does not make formal diagnoses, even though it focuses on clinical problems; in most jurisdictions, providing a formal diagnosis is restricted to physicians and psychologists. But you don’t need an MD or a PhD to spot a problem, and sometimes referral to SFI follows a more formal diagnostic evaluation by a health professional. In essence, SFI is focused on addressing symptoms. And that matches up well with what people want from mental health care in general; people are more distressed by specific symptoms than by the labels that categorize them. Symptoms are what people have, while diagnoses are what professionals make.

SFI goes right to the heart of that, teaching skills for handling those symptoms. The process helps parents learn to deal with a range of common childhood behaviour problems, such as temper outbursts, not listening, verbal and physical aggression, and difficulties with focus—common struggles in children with ADHD. The calls aren’t long—typically only forty-five minutes, once a week. And despite the availability of newer forms of communication like FaceTime, Zoom, or Skype, SFI still advocates for the use of telephones. They found that many families didn’t want to “see” their coach, and the visual anonymity of the phone meant that families often disclosed more. They liken it to the confessional screen of the Catholic Church, and it serves as a reminder that while we are easily attracted by the shiniest technology, it is the substance of what is transmitted that counts more than the vehicle for it.

When I listened to a forty-five-minute phone call used in training between a parent and a coach, I did so as a mental health professional and a parent. I was impressed from both perspectives. The call began with a review of progress since the previous call, and it felt natural and conversational, not a lecture or a scripted dialogue. It was very much rooted in the realities of that particular child and family, both supporting and challenging the parent to consider alternative ways of responding to their child and to reflect on the consequences of rewarding behaviour, bad and good. At one point, the coach role-played the child to get the parent to demonstrate her responses and then consider their impact. At another time, the coach and parent listened to an audio recording of an interaction in order both to appraise how it went and to imagine alternate responses. Throughout, the coach was practical, positive, and supportive. There was a palpable relationship, even on the phone, between the coach and the parent. And it wasn’t just about exploring what went wrong in the past week; there was also discussion of what went well and why. Seamlessly, rating scales were introduced to evaluate both the progress to date since beginning the program and the value of the previous session.

As a mental health professional, I could feel the coach carefully positioning the health-promoting bricks to create a stronger foundation. I heard cognitive behavioural techniques used alongside positive regard for the child and family—but always in the context of the actual experiences of the people on the other end of the line. It never felt generic, stilted, or forced.

As a parent, admittedly through the gauze of distant memory, I could see things I wish I had done differently, even though I have been blessed with two terrific sons. All children challenge us as parents, and all of us as parents can benefit from strategies such as the ones I heard. One of my favourite child-rearing books from almost seventy years ago, by pediatrician and psychiatrist Dr. Hilde Bruch, had a great title: Don’t Be Afraid of Your Child: A Guide for Perplexed Parents. I treasure my vintage copy.

But some children and families really need more intensive help, and that’s where SFI can be an important first step (and sometimes the only step). As a first step, it’s important that it be rapidly accessible. Families are typically contacted within forty-eight hours of receipt of a referral for an initial assessment, and often start treatment within three weeks of that first contact. That’s fast.

Because the SFI coaches are nonclinicians, it is much easier and faster to expand this kind of parent training program to reach more people than it is to train up and distribute more child psychologists and psychiatrists. Coaches tend to be women in their mid-twenties who are experienced in working with children and families in some way, usually with an undergra...

Table of contents

• Cover
• Title Page
• Dedication
• Foreword
• Introduction
• Chapter 1: Pierre and Attention Deficit Hyperactivity Disorder
• Chapter 2: Shobha and Anxiety
• Chapter 3: Elyse and Borderline Personality Disorder
• Chapter 4: Richard and Panic Disorder
• Chapter 5: Martha and Depression
• Chapter 6: Manuel and Schizophrenia
• Chapter 7: Kirk and Opioid Use Disorder
• Chapter 8: Lukas and Homelessness
• Conclusion: We Can Do Better
• Acknowledgments
• About the Author
• Notes
• Index
• Copyright