5. Taking an Active Role

The first part of this book explains how difficult it can be to find the mental health care you need in a timely manner. In this second part, you’ll learn what you can do about it. You’ll discover practical tools, strategies, tips, and techniques to avoid the pitfalls of the system. You’ll create new opportunities and learn to maximize each one.

Some approaches we’ll describe were impossible ten years ago. Others were once heretical to the medical establishment. Maybe if you’re the kind of person who has already researched your symptoms and treatments, what you learn here will be a natural progression. However, if you’ve instead assumed a more traditional or passive role in your health care, what you learn may represent a far greater change.

We’ll begin by introducing the concept of patient navigation, which is critical to getting the best mental health care possible.

Managing the Big Picture

Simple problems often have simple solutions, even in a field as complex as medicine. You develop an infection, you see your family doctor. They order a blood test that confirms an elevated white blood cell count. They prescribe an antibiotic that you take for several days. If you’re better after that, you’re all done.

Mental illness is rarely that simple. Diagnosis is difficult, sometimes taking months or years. Finding the right treatment takes more time and much trial and error. You might need monitoring and ongoing adjustments to your treatment. This long-term or chronic approach to care is very different than dealing with a simple infection.

Managing chronic illness is not easy. There are many moving pieces. Often, certain tasks (and people!) fall through the cracks. One doctor doesn’t order a test because they assume another doctor already did. The second assumes the first ordered it. Both wait on the test results before proceeding. If you cancel an appointment, does someone ensure it’s rescheduled? Does anyone check that a treatment is working, one, two, or six months later? If symptoms worsen, is that brought to the right person’s attention and dealt with promptly? Or, more typically, are problems forgotten until you remember to ask at your appointment—six months later?

In the past, your family doctor kept an eye on this process. They’d notice if things went south, pick up the pieces, and get everything back on track. They can’t do this anymore. It takes all their attention to focus on the complex problems in front of them right now. Medicine today is more complicated, and doctors can’t keep up. You need new ways to monitor your overall progress.

Mental illness may be the most challenging chronic illness to manage. It can involve many professionals in very different fields. People with the same diagnosis and symptoms can all react very differently to the same treatment. While the science behind mental health is progressing, it’s decades behind other areas of medicine.

No one can fix the problem by just throwing more money at it. Even if the money were there—which it isn’t—to add more doctors, counsellors, etc., the complexity remains. Improving your mental health care needs a new way of thinking.

Patient Navigators

There is a helpful model in some other areas of medicine called patient navigation. We’ll show you how it’s used in cancer care, and then see how it could be adapted to mental health.

In cancer care, many professionals work together to help each patient. These include family doctors, medical oncologists, radiation oncologists, surgeons, nurses, pharmacists, dieticians, social workers, and others. Each has a role to play that depends on what happens when patients see others in the system. If tests are delayed or lost, or if patients don’t see the right doctors at the right time, it can mean the difference between life and death.

Cancer treatment is complex, confusing, and stressful. To help manage this, dedicated cancer centres are created where the many different care providers can work closely together. Each patient is assigned a patient navigator. Their only job is to ensure that everything that patient needs gets done, and nothing falls through the cracks. They know the system, the players, and what happens at what time during treatment. They’ll book appointments and tests, and make sure the results get to the right people. They’ll help you with any questions, chasing down answers on your behalf.

Patient navigation is not entirely new. It has existed informally for decades. People often bring family members and friends to medical appointments or case conferences. They discuss their care with them, ask for advice, and entrust them with day-to-day organization involving their care. Family and friends may ask other medical people they know for help from time to time. Yet, having a dedicated person responsible for all this is a recent phenomenon.

Even more recent are third-party, privately-paid patient navigators. They are neither hired by the healthcare institution, nor are they friends or family. Instead, you or your family hire them the same way you’d hire a lawyer or accountant.1 This is an area of the healthcare industry still in its infancy but poised for growth.2

Could mental health use this model? It’s obvious that the current fragmented and short-term approach to care is failing many people. But is anyone in the system ready to pay for patient navigators? Definitely not.

So, is that the end of the story? We believe the answer to that question is a clear no. As we turn again to informal and unpaid patient navigation, keep in mind the roles and responsibilities of dedicated patient navigators. Can family, friends, and patients themselves accomplish the same things? Most definitely, particularly when it comes to the management and process of mental health care. These are shaky aspects of the system now, and ripe for improvement.

As we’ve said before, this is not something that applies to all patients or all areas of mental health care. If you’re having a major psychotic episode or extreme depression, you may not be able to manage much of your care. However, if you’re one of the high-functioning majority with mild to moderate mental illness, you’ve got the skills and capabilities. Assisting with the management of your care is entirely within reach.

Changing Attitudes and Opportunities

The capacity for patients to help with management, coordination, and advocacy in their own mental health is new. In the past, doctors held all the medical knowledge, gathered from their long training and the dusty books and journals on their shelves. Anyone else seeking such knowledge would trek to a medical library and spend hours in the stacks trying to decipher arcane tomes of technical jargon. From that, they might gain a basic understanding of a topic. Now, this seems archaic.

Today, we have an overabundance of information available to anyone. Much of it doesn’t presume formal medical training, though a lot of it is also of dubious quality. The internet has levelled the playing field. Even many doctors find “Dr. Google” faster than digging up that one journal article in their overflowing filing cabinets.

Attitudes toward patient involvement in medical care are also—slowly—changing. In the past, doctors’ proclamations were gospel. Today, patients download their own lab results. They bring their own research and treatment alternatives to appointments. They expect to learn about the relative merits of different options and participate in treatment decisions. Medical students today learn the soft skills of collaborative problem solving and team-based care.

Modern mental health care offers many opportunities for patients to contribute and play a more active role in their care. For example, measuring symptoms and severity is time-consuming. Much of it is based on subjective self-reporting. Patients can track many of these at home without their doctor’s direct involvement. A doctor asking the same set of questions each appointment is often a poor use of limited time. When it comes to learning about and engaging in discussions about treatment, the complexity of the underlying science doesn’t need to be an obstacle. Patients can use simpler mental models without having advanced neuroscience degrees.

Active Collaboration

You should have options beyond the traditional paternalistic model of medical care where doctors always know best and patients don’t question them. Why shouldn’t you be an active member of your treatment team, making decisions in collaboration with your care providers?

For this to work, both patients and providers must recognize what each brings to the table, including their limitations. Doctors have broad medical knowledge, experience treating mental illness, access to medical tests, and resources. They know the many causes of symptoms and consequences of treatments. You have first-hand knowledge of your own experiences. You can learn about your illness, track its progress, and manage your day-to-day care. You can weigh the benefits and risks of different treatments. You have far more time to spend on your own care than your doctor.

Not everyone can or wants to take on these responsibilities. But, in our experience, countless people are able and very willing.

Better care can be a reality. What it takes is learning a specific set of skills and how to apply them. By doing so, you help not just yourself, but the whole system, in effect adding much-needed capacity, without asking for the impossible: more investment of public funds.

Let’s now turn to the skills you’ll need.