Mental Health Navigator

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Preface

You know the mental health system is screwed up when you need a book to help you find decent care.

Awareness campaigns make it seem so easy. All will be better if you talk to someone about your mental health concerns. Doesn’t that imply that if you do ask for help, you do talk, that you’ll actually get some help? Just take that first step, and the mental health system will take care of you.

If you’re reading this, chances are you haven’t found the help you’ve been searching for. You may be looking for your own care or you may be supporting a family member or friend. You may even be a healthcare worker trying to help your patient or client. You’ve talked. You’ve asked. Still no help. All is definitely not better.

Your expectation of finding compassionate or humane care has faded. And confidence that someone will be there to take charge of your care? Please. At this point, you may be even more dejected, hopeless, lost, frustrated, and confused than when you started.

You’re not alone in feeling this way. The lofty assurances that you just need to ask for help don’t match the reality of mental health care.

Too Many Questions, Not Enough Answers

Most people find mental illness and its treatment mysterious. Few know what good care even looks like. That’s where this book comes in. We’ll pull back the curtain, put an end to the mystery, and explain what good mental health care is all about. With this insight, you’ll be able to find better care.

Here’s a typical path through the system. Your mental health is impacting your education, work, self-care, or family relationships. Like many people, you go to your family doctor for help. (If you’re helping someone else, encouraging them to talk to their family doctor is also common.)

Your life, which seems to be falling apart, can’t be fixed in the average 5- to 15-minute family doctor’s appointment. Instead, your doctor prescribes an antidepressant and suggests some lifestyle changes, maybe provides a list of counsellors, the names of a few books or websites, and the local crisis line number. They might promise a referral to a psychiatrist. But don’t get your hopes up, because the waiting list is six months long.

You leave your doctor’s office and try to process what happened. If you’re struggling to function, how are you supposed to wait around for half a year? And hope that the person you see can fix everything? You’re confused and skeptical that a pill will help and overwhelmed just thinking about counselling. What do you do now?

Instead of a family doctor, you might start with a counsellor, psychologist, or another mental health professional. They might give you different options, but the gist of their response is pretty much the same.

If you had questions before, you still need answers to most of them:

  • What’s wrong with you?

  • How are you supposed to know what kind of help you need?

  • What are the treatment options? Why so many?

  • How do you choose? What if you choose wrong?

  • Why can’t someone just tell you what to do?

  • Where should you go? Who can help you?

  • Why so many different opinions about what you should do?

  • Will you end up stuck, going in circles, and not improving?

And that’s if things go well. Some people who seek help are cut off and can’t even share their concerns. Patients have told us that professionals answered their questions with, “there’s nothing wrong with you,” or “suck it up,” or “I gave you a pill, what else do you want from me?”

You Can Do Better!

No large piles of money or quick fixes will address the structural flaws in the mental health system. When patients, their supports, and their healthcare providers don’t know where to turn, it’s a problem. When some family doctors recommend you Google local psychiatrists and cold call their offices to find one taking new patients, it’s a problem. While stigma around mental illness is also a problem, for millions whose mental illness dramatically affects their life, being aware of their illness is not their problem. Finding help is their problem.

As a result, making the most of the help you do receive is critical. You’re certainly willing to put the effort in. You want to be informed and involved. But it’s hard when you receive partial and conflicting information. You’re trying to get a sense of what’s going on and how to move forward. You need a foundation to make sense of your options, and it’s not there.

We can’t magically change the system to deliver instant, top-notch care to everyone for every ailment. We can show you how to make the best use of the system we do have. And in mental health, there are many things you can do to dramatically improve care. These aren’t big secrets. But a fragmented mental health system makes them very hard to find. We’ll help you bring it all together to produce these results:

  • You’ll better understand your illness and its treatments.

  • You’ll help your health providers deliver better care.

  • You’ll proactively contribute to your treatment plan and care.

  • You’ll avoid unnecessary delays and wasting time.

  • You’ll stop feeling so confused and hopeless.

  • Ultimately, you’ll have a better chance at becoming well more quickly.

And in the immortal words of author Douglas Adams, don’t panic! You won’t need to read this entire book cover-to-cover. We’ve made it easy to find what you need and skip parts you may not need now. You can learn the essentials or go deeper on some topics. We’ll explain more in the first chapter.

Empowerment Is Key

One of us (Pauline) is a psychiatrist who has been practicing for about fifteen years, spanning three Canadian provinces (Ontario, Alberta, and British Columbia) and various practice settings (public and private hospitals, outpatient mental health clinics, working directly with family doctors, and private practice). The other (Mark) has run Pauline’s front office for several years. Besides (or despite) working together every day, we’re also married.

Firsthand we’ve seen countless patients who had to wait months or years to receive care. All the while, their quality of life deteriorated. We’ve seen waiting lists grow, options for care disappear, and fewer psychiatrists available to help more patients. We’ve had to tell people who could no longer hold a job or keep their family together that we couldn’t help them. We’ve seen newly pregnant women, worried about antidepressants in pregnancy, told to wait six months or longer for an appointment.

We’ve also heard from many people who waited a year or more to see a specialist. They were seen only once, too briefly to even tell their story, then given the wrong diagnosis or treatment. They were sometimes told what medication to take, unaware of the benefits, risks, or the existence of alternatives. Recommendations didn’t help? Get back in line.

We’ve seen strain on the system, not only from a lack of resources. Sometimes resources were used inappropriately or unwisely. People who shouldn’t have been sent to a psychiatrist were. People who should have weren’t. Either someone thought it wasn’t needed or nobody was available. We’ve seen many gaps in the system where people get stuck.

We’ve also seen countless missed opportunities. Simple actions not taken early on. Mistakes that could have been avoided. Well-meaning health professionals who could have done a few things differently but didn’t have the time, expertise, or resources to provide better care.

We’ve also seen so many intelligent, capable, and resourceful people—who also happen to have a mental illness—unable to help themselves. Not because there’s nothing they could have done, but because they couldn’t easily find the information they needed. Most people, along with family and friends, are more than willing to put in some work if it helps and they have the skills. A modest investment in education is all it takes.

Who This Book Is For

Mental health uniquely affects each person. You may have the same mental health diagnosis as someone else, but your experience might be very different. Couple that with the fact that there are hundreds of mental health diagnoses. This makes it difficult to provide advice for everyone.

Illness-Inclusive

This book doesn’t focus on a specific mental illness or diagnosis. While various forms of depression and anxiety are more common, the main issue—why you’re not finding the care you need and not feeling better—is the same regardless of the diagnosis. So are the solutions to the problem. In terms of age, while some of what we discuss may benefit mature teens or parents of children with mental illness, this book deals with adult mental illness.

Moderate Severity

This book is geared toward people whose mental illness significantly interferes with one or more areas of their life but isn’t completely debilitating. In severe illness, treatment options may be more limited, and people may not have the skills or motivation needed to help. They may not appreciate the impact of their illness, or even that they have an illness.

Instead, this book is for people who have an illness of mild to moderate severity. Hopefully, this includes you. If so, you appreciate the impact your illness is having on yourself and those around you. Though you may need help, you’re able to continue in some capacity with several or even most basic activities, e.g., hygiene, getting out of the home, taking care of kids, shopping for groceries, and possibly working or going to school. You can have sensible interactions and conversations with others, though these may be limited. Most people seeking mental health care fit this profile.

High Functioning

You might worry that some days you’re not as sharp as before. You can finish basic tasks, but they may be more difficult. You may have less energy or motivation, forget things more often if you don’t write them down, or need to read things a few times before they stick. You may have more difficulty concentrating, trouble finding the right words to use, or you may become quickly frustrated.

Can you still take an active role in your treatment? Yes. Many people with mental illness experience similar cognitive difficulties. These aren’t the same as you’d see in dementia. These challenges won’t keep you from taking the meaningful steps to improve your mental health care that we’ll cover in this book. You’ll also find these symptoms usually improve as your underlying illness improves.

Friends and Family

Many people with mental illness are fortunate to have people in their life who support them. If you’re one of those supporters, this book is for you, too. You will better appreciate what those close to you are experiencing. You’ll learn how to work the system to better advocate for them. You’ll also be better able to help them as they go to appointments, work with treatment providers, or experience setbacks. Mental health is truly a team sport.

In return, we beg your indulgence on one matter. We’ve chosen to write as if we’re directly addressing people who require help with their mental health. We do not want to exclude you, given the invaluable help you provide, but wanted to save you (and everyone else) from some horribly convoluted writing.

Healthcare Professionals

Many healthcare professionals will also benefit from this book. If you work in healthcare, you’ve seen how mental illness affects all areas of your patients’ lives. You’ve advocated on their behalf, trying to find help for their mental illness, only to face bureaucratic roadblocks and frustration. You may have even borne the brunt of their confusion or suffering, spending more time with them than the mental health specialist they see.

This book will help you better support your patients. If you’re a family doctor, psychiatric nurse, psychologist, social worker or other mental health provider, you’ll find it a good review of many topics and an introduction to areas you’re less familiar with. You may even find some new and updated information. You’ll also gain a fresh appreciation for the decision-making processes of other mental health professionals you work with each day.

As noted above, for clarity, this book speaks directly to those experiencing mental health challenges. We’re not ignoring you!

Location, Location, Location

Finally, a quick note about where you live. While our direct experience is in Canada, we’re mindful of the very significant differences between health systems in various jurisdictions. We draw examples from Canada, the USA, the UK, and elsewhere. The bulk of the book applies equally to people from any location, even if some fine details vary.

(Speaking of location, American readers should note that spelling follows the Canadian variant, e.g., “behaviour” versus “behavior.”)

Except for the minority with an excess of money or influence, most people run into difficulties obtaining the mental health care they need. The reasons may vary based on how health systems are organized, funded, or accessed. Problems include long waiting lists due to a shortage of specialists, inability to pay, or restrictions on what insurance companies will cover. You’ve still got to make the most of what you’ve got.

Besides, while health systems vary, mental illness and how it’s treated is pretty much the same wherever you go.

Let’s get started.

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