In This Chapter
Recognizing the importance of finding the right mental health professionals
Choosing a psychiatrist
Meeting the rest of the team
Fixing a team that’s not working effectively
If you’ve ever had to find a doctor in an emergency, you may have experienced the unsettling feeling of having to pick a name out of that proverbial hat, with no other options. Although this situation may be unavoidable under certain circumstances, for a chronic medical condition like schizophrenia, you need to — and will have the time to — carefully assemble a well-versed, experienced team of professionals who know you and your loved one well (and vice versa). Odds are, you’re going to be spending a lot of time with these people over the years, so you need to be comfortable with each other.
In this chapter, we help you find the professional help your loved one needs. We tell you what kind of mental-health professionals are involved with treating schizophrenia, how to check out credentials, and how to ensure that your team will work well together. We also help you through the trying times when the team isn’t working out — how to approach the problem and how to improve a stressful situation.
Putting Together a Healthcare Team
Just as a baseball team needs a skilled pitcher, catcher, batters, and various other team members in the right positions — as well as a skilled manager to pull them all together — you and your loved one need a variety of professionals to help you handle different aspects of your journey.
Finding the right group of mental-health professionals to help you and your loved one can be a lot of work, and can be a draining experience involving phone calls, research, and sometimes money spent to interview different people. So why should you make the effort to assemble a team of professionals? Being able to choose people you and your loved one like and understand — and who like and understand the two of you — is important because any type of mental-health treatment requires close collaboration between a patient, a therapist, and, to some extent, the family. Things go much more smoothly when you’re working with a group of people you trust and respect.
Many people feel that even seeing a mental-health professional is an admission of weakness. The terms shrink (derived from head-shrinker) and head doctor are widely used disparaging terms applied to psychiatrists, psychologists, and social workers by the media and the public. Some people fear that these professionals can read and control their minds — which is far from the truth! (Honestly, most healthcare professionals would be delighted if Mind Reading 101 could actually be added to their medical-school classes.)
Mental-health professionals are ordinary people who are trained to understand the mind and behavior — and to use that knowledge to improve mental health or diagnose and treat mental disorders. Any healthcare professional who comes across as knowing all the answers — or as someone who’s condescending — is a person to delete from your healthcare team roster permanently.
In the next sections, we describe the different types of mental-health professionals, starting with the person who’ll be your team manager — your psychiatrist.
Your First Priority: Finding and Interviewing a Good Psychiatrist
Finding the right psychiatrist is essential to the management of schizophrenia. Not only is your psychiatrist the coordinator of all your team members; he’s also the person who makes most of the medical decisions relating to treatments and medications. You want someone you feel comfortable with, whose judgment you trust, and whose reputation in the medical community is stellar. Where do you find such a paragon? Not to worry — many wonderful psychiatrists are practicing today. This section is all about finding the right one for your loved one and you.
Who’s on first?
You probably already know the answer to this question — your psychiatrist is. She’s your first line of defense against schizophrenia, and part of the reason is because she knows and prescribes the drugs used to control the most troubling symptoms of the disorder. Research shows that medication is the single most essential element of treatment for schizophrenia and that identifying the right medications for your loved one is vital to recovery. For this reason, your first priority should be finding the right psychiatrist.
Be sure to invest as much time as necessary to identify an expert who’s knowledgeable about psychopharmacology (the medications used to treat mental disorders) and about your loved one’s disorder (schizophrenia).
Psychiatrists are physicians whose training enables them to diagnose and treat mental disorders. After medical school, they complete an additional four years of residency in psychiatry and some take written and oral examinations to become board-certified. Some go on for additional specialty training in fields such as geriatric psychiatry (specializing in the care of older persons) or child and adolescent psychiatry (specializing in the care of younger ones).
The large majority of them have an MD (Doctor of Medicine) degree after their name, although some psychiatrists are trained as osteopathic physicians and have a DO after their name (for Doctor of Osteopathy). Psychiatrists who are Doctors of Osteopathy have also completed psychiatric residencies.
There are many excellent mental-health practitioners, but psychiatrists have the medical training to understand the complex relationships between the mind and body — and are best trained to rule out or make sure that there is no underlying medical basis for the psychological symptoms a person is experiencing. The amount of training a psychiatrist has in conducting various types of psychological therapies (for example, psychotherapy or cognitive behavioral therapy; see Chapter 9) varies based on where and how he was trained.
In most states, only a physician can involuntarily hospitalize an individual, although he need not be trained as a psychiatrist (see Chapter 6).
Looking for a specialist in serious mental illness
A psychiatrist is a psychiatrist is a psychiatrist? Not at all. Because only about 1 out of 20 individuals diagnosed with a mental disorder is likely to have what is considered a “serious mental illness” like schizophrenia, it makes sense that the majority of psychiatrists maintain practices that are geared toward patients with less severe mental-health problems. For example, many psychiatrists focus on treating people with less severe symptoms of depression and anxiety, or on counseling couples with marital problems.
You want to make sure that the doctor you select is experienced and comfortable working with individuals with schizophrenia. You also want to find out about the doctor’s educational background and training, whether he’s certified by the American Board of Psychiatry and Neurology (meaning, he has passed a national examination), and whether he sees a large number of people with serious mental disorders in his practice.
You wouldn’t want to choose a surgeon for an operation that rarely does the procedure you need to undergo, and the same logic applies to choosing clinicians for treatment of a complex disorder like schizophrenia.
Starting your search
Whether you’re looking for an auto mechanic or a baby sitter, the best way to find a reputable referral is usually through word of mouth. The same thing can be said about finding a psychiatrist or any other mental-health professional. Although there are places where you can find names and directories of individuals, vetting a clinician by checking him out with other families, trusted friends, or relatives who’ve used him and were satisfied is always prudent.
Compiling a short list
The vast majority of psychiatrists practice in larger cities; if you live in a small city or town, you may have to travel to a larger city or an academic medical center. Either way, you want to first compile a list of possibilities. Here are some suggestions for doing that:
If you’re being referred for help by a physician or another mental-health professional (for example, a psychiatrist you met in an emergency room), ask the doctor to provide you with the names of several psychiatrists she would recommend.
Speak to your primary-care doctor, internist, family doctor, pediatrician, or gynecologist, and see if one of them can recommend one or more psychiatrists for you to consider.
Check with your local or state medical or psychiatric societies and ask them for names of doctors who are convenient to your home. For a complete list of district branches of the American Psychiatric Association (a professional specialty organization of psychiatrists), go to http://online-apa.psych.org/listing/.
If you have health insurance that covers mental-health and substance-abuse (sometimes called behavioral health) treatment, find out the names of doctors who participate with your private insurance plan or accept Medicaid or Medicare.
Contact public mental health clinics or other outpatient programs in your community. Many of them may function under the umbrella of the state mental-health authority or county/city mental-health department.
Contact your state mental-health authority or state department of education to find out the names of licensed practitioners in your area.
A number of sites on the Internet provide different types of information on doctors. For example, the American Medical Association (AMA) has a Doctor Finder service (http://webapps.ama-assn.org/doctorfinder/ home.html), which allows you to search for a doctor by name and location or by specialty and zip code. Unfortunately, this site, like most others, has its limitations: It only includes doctors who are members of the AMA, and the information provided is too limited to use in selecting a psychiatrist. (For example, it may say that the doctor has an office-based practice, without providing information about the types of patients she sees or her knowledge of psychiatric medications).
An increasing number of Web sites — including Health Grades (www.health grades.com) and Revolution Health (www.revolutionhealth.com), among others — also offer directories of psychiatrists and other physicians, some free and some at cost. But these sites only enable you to build a list of possibilities — they don’t provide specific advice on how to narrow your list to make an informed choice. See the appendix for other suggestions on finding mental-health providers on the Web.
Google Maps (http://maps.google.com) can be useful for pinpointing the location of various mental-health professionals after you have their names (and may even help you with directions for getting to your first appointment).
Making a selection
After you’ve compiled a short list, your best bet is always to go with a psychiatrist who comes recommended as knowledgeable and trustworthy by someone you trust and who has your interests in mind. Check with trusted
friends or relatives to see if they can suggest names and are willing to tell you about their own experiences.
Call the office of a local affiliate of the National Alliance on Mental Illness (NAMI), and ask to speak with consumers or family members who have experience with psychiatrists in your community and who can share their opinions with you. They can help you figure out who’s good, better, and best where you live on the basis of their own experiences. (To find your local NAMI affiliate, go to www.nami.org/Template.cfm?section=your_ local_NAMl — or go to www.nami.org and, under the “Find Support” section click on “State & Local NAMIs.”)
Having preferences concerning age, gender, religion, race, or language is perfectly acceptable, if that makes you or your loved one feel more comfortable. However, because experienced psychiatrists are in short supply, you may have to set priorities about what characteristics are most important to you and your loved one.
A picture is worth a thousand words: If you can’t find an online bio for the person, sometimes you can be your own investigator and use Google Images (http://images.google.com) to find the person’s picture. Just looking at the doctor’s photo may give you a sense of gender, age, or other considerations that are important to you but that you might be reluctant to ask about.
If you or your loved one has special needs, you’ll want to find someone with the appropriate specialty. For example, if you’re seeking care for an elderly parent, you may want to look for a geriatric psychiatrist. If your teenage son is abusing drugs and has signs of a mental disorder, you may want to look for a psychiatrist who has a specialty in addiction psychiatry or experience treating people who have both mental health disorders and substance abuse problems.
Preparing for the first meeting: Questions to ask
We always tell families that, whenever possible, they should either speak to a psychiatrist before their loved one does or meet with the psychiatrist in person to make sure that he’s the type of person your loved one is likely to feel comfortable with. This advice is particularly relevant with children and adolescents — you don’t want to expose your child to someone you don’t respect and trust.
After you talk to or meet with the psychiatrist, your loved one may want to have a no-obligation, first-time meeting with the psychiatrist to make sure that she feels comfortable with the individual’s style and approach.
We can’t overstate the importance of doing everything you can to enhance the odds of making the first visit work. Many families tell us about loved ones who had bad initial experiences that turned them off from getting help for a long time afterward. Finding someone who is respectful to your loved one as well as to family and friends is essential.
If a person’s first experience with a psychiatrist is negative, it can turn him off from treatment, a situation that can be very hard to undo. You want to avoid this scenario, if at all possible.
The following is a list of questions that your loved one (depending on her condition) or you can ask to find out more about the doctor:
What are your hours for seeing patients? If you’re working, it may be difficult for you to take your loved one to see a psychiatrist who only sees patients during the day. Try to find someone whose hours work with your schedule.
What are your fees and what kind of insurance do you accept? If she doesn’t accept insurance, ask whether she has a sliding fee based on income.
Where is your office located? Some doctors practice in multiple locations and one may be more convenient than another. (The importance of having a place to park if you drive or being close to a bus route if you don’t shouldn’t be overlooked.)
What’s your philosophy and approach toward treatment? Is he a biological, psychosocial, psychoanalytic (see Chapter 2), or biopsychosocial (someone who combines biological, psychosocial, and social concerns) psychiatrist?
Ideally, it would be nice to find someone who can both prescribe medication and provide supportive therapy. Often, a doctor will only do medication management, and you will need to see another individual for therapy. This is perfectly acceptable if the care is coordinated.
Psychoanalysis is generally not the treatment of choice for people with serious mental disorders like schizophrenia or bipolar disorder. If someone recommends psychoanalysis for the treatment of schizophrenia, leave the office as quickly (but politely) as you can.
What types of patients are you most comfortable working with? Some psychiatrists specialize in certain disorders (for example, schizophrenia, mood disorders, anxiety, marital problems, and so on) or in working
with special groups (such as older people, children, or adolescents). Ideally, you want your loved one to have a psychiatrist who specializes in people like him! The fit doesn’t need to be perfect, but if someone rarely sees people with schizophrenia, the psychiatrist probably has less experience in using antipyschotic medications.
How long will it be before I can schedule an appointment with you?
Many good psychiatrists balance clinical responsibilities with teaching or other commitments so they have tight schedules. But most doctors have the flexibility in their schedules to see people within a day or two if it’s an emergency. (This may be more difficult in the case of a new patient.) If the wait is too long for you, you might ask the doctor to recommend another psychiatrist who can see you sooner.
What arrangements do you have in place to handle overnight or weekend emergencies? There should always be someone on call in the event of an after-hours emergency (either a covering doctor or an answering service that can reach the doctor).
Unless you’re in an emergency situation, invest your time upfront to avoid disappointments. Of course, if your loved one needs to see someone right away, you’ll need to streamline the process for the time being.
You can always change doctors when you have more time to do so. Your need may be so urgent that an emergency-room doctor is your only recourse in the short run, but after the crisis is over, you can evaluate whether you want to make that relationship permanent or look elsewhere.
Meeting a psychiatrist: What to expect
At this first meeting, the psychiatrist is likely to speak to your loved one alone at first and then probably will ask to speak to both of you together (either at this meeting or a subsequent one). The doctor will be trying to learn about her (see Chapter 2) and may ask you to provide additional information. It may take one, two, or perhaps a few meetings for the doctor to have enough information to decide on a working diagnosis and on an approach to treatment. With your loved one’s permission, the psychiatrist may want to gather records from other physicians or mental-health professionals.
When this evaluation is completed, the doctor will share his ideas about diagnosis and treatment. The doctor will play an ongoing role in monitoring your loved one’s medication and in determining if she ever needs hospitalization or an alternative to hospitalization. If your loved one is very psychotic (out-of-contact with reality), you may need to be more involved in treatment decisions.
Some of the questions your loved one needs to ask if they still remain unanswered include:
How often do you expect to be seeing me? How long will each session last?
Will you be prescribing medication for me and supervising it? Will you be providing supportive therapy as well?
What are the potential benefits, risks, and side effects of any therapies you’re prescribing for me?
What other mental-health professionals do you think need to be on my team? How will you communicate with each other?
Will my confidentiality be protected? (See Chapter 6 for more information.)
Do you need me to sign releases for any other additional information that would assist you in my treatment?
What role do you expect my family to play in my treatment? How can they communicate with you?
How would you handle my care if I had a psychotic break? Are you affiliated with a particular hospital?
If things seem to be going well up to this point, your loved one should be able to make a commitment to treatment.
It takes time to get to know someone, and many people are uncomfortable during the first few months of treatment. But if your loved one continues to feel extremely uncomfortable with the psychiatrist, it may be appropriate to try someone else on your list to see what another clinician would be like. If you live in a small town, your options may be limited unless you’re willing to travel, which may not be practical.
If no one seems to please you or your loved one, you both need to seriously consider the possibility that you’re actively avoiding getting help.
Identifying Other Members of the Team
You can use the same method to find other professionals you’ll need on your team as you used to find a psychiatrist (see the preceding sections).
The bad news: The process is just as tedious, except that your psychiatrist may be another person who can now help you with referrals.
If you or your relative participates in a program like an outpatient psycho-social rehabilitation program or a clubhouse (see Chapter 9 for more about these programs), the composition of your team (both in terms of individuals and their specialties) may be dictated by the staffing of the program.
An array of other mental-health professionals can play different roles in your care. We introduce you to them in the following sections.
Psychologists
Although psychiatrists and psychologists (with doctoral degrees) are both called “doctors,” psychologists have graduate training in psychology that leads either to a PhD (Doctor of Philosophy) or PsyD (Doctor of Psychology). Some psychologists only have master’s-level training.
After graduate school, depending on the state where you live, most psychologists complete a one- or two-year internship before they can get a license from the state. An essential distinction between psychiatrists and psychologists is that, in most states (except Louisiana and New Mexico), only psychiatrists are able to prescribe medications. Often psychologists practice collaboratively with psychiatrists, who supervise medications, while the psychologist provides psychotherapy.
The title psychologist can only be used by an individual who has completed this education, training, and state licensure. Informal titles such as counselor or therapist or psychotherapist are often used as well, but other mental-health professionals with far less training also use these same titles.
Psychologists often provide psychotherapy to individuals or groups. Many have particular specialties (for example, working with special populations like children, adolescents, or victims of abuse) or using particular methods (such as psychodynamic, cognitive behavioral, or supportive therapy; see Chapter 9).
Most states have no special educational or training requirements to call yourself a therapist or psychotherapist. Anyone with a PhD (doctoral degree) in English literature or political science can call himself a “doctor.” Some people hang out a shingle or advertise in the local newspaper without any specialized training. It’s essential to ask and check into a professional’s background if you aren’t sure of her training or licensure.
Social Workers
Social workers, also called clinical social workers, either have MSW (Master of Social Work) or DSW (Doctor of Social Work) degrees. After their training, many sit for a licensing test and become accredited by their respective states as LCSWs or ACSWs.
Like other mental-health professionals, social workers can work in private practice or as part of a mental-health facility, such as a hospital, clinic, or rehabilitation program. They can’t prescribe medications, but if they have experience working with people with mental illness, they often help oversee the use of medications, working closely with a psychiatrist.
Many clinical social workers are trained to serve as advocates for patients and their families. They can assist with referrals, help you obtain benefits and entitlements, and help you navigate the mental-health system. They also can provide support and help educate families and consumers. In fact, many case managers (see “Coordinating Treatment and Care,” later in this chapter) are trained as or are supervised by social workers.
The National Association of Social Workers (NASW) has an online directory of social workers at www.helpstartshere.org.
Psychiatric nurses
Generally, a psychiatric nurse is an RN with a bachelor’s, master’s, or doctoral degree who has specialized experience and training in working with people with mental-health problems. Psychiatric nurses also may work with individuals or groups in private practice, clinic, or hospital settings.
Because of their nursing background, psychiatric nurses are often attentive to many of the health problems experienced by people with serious mental disorders (see Chapter 15) and are alert to the side effects of psychiatric medications. Some nurse practitioners (RNs who are licensed to practice medicine in collaboration with a physician), depending on the state where they practice, are allowed to prescribe medications.
Some additional members of the team
A number of other professionals, including occupational therapists, vocational therapists, recreation therapists, rehabilitation specialists, and peer
counselors are called upon to work with people with schizophrenia who have broad needs that transcend treatment alone — which is usually the case. Some of these professionals may be part of your loved one’s treatment for only a short time; others may work with them longer.
Licensed professional counselors
Counselors can either have a master’s degree in counseling, pastoral counseling, or psychology — or a PhD in counseling psychology. They can provide diagnosis and counseling to individuals or groups and work under a professional license obtained from their respective state. They may also be certified by the National Academy of Certified Clinical Mental Health Counselors. You need to ask.
Although most counselors tend to focus on people with less serious problems, many are experienced in working with people with serious mental disorders like schizophrenia.
Marriage and family therapists
Marriage and family therapists (MFTs) bring a family-oriented perspective to care. They’re graduates of master’s or doctoral programs or study MFT after earning another mental-health-related graduate degree. Currently 46 states license or certify MFTs.
MFTs work with couples and families and can be helpful in providing consultation, education, and support to families.
Occupational therapists
Depending on the age of onset of their illness, some people with schizophrenia never learned to manage the activities of daily living or, after a long period of illness, lost the skills they once had. The goal of occupational therapy, performed by individuals with OT degrees, is to help restore the skills a person needs to socialize and function appropriately at home, at school, or in work settings.
Vocational therapists
So many people define themselves by what they do. Nothing feels worse than seeing yourself — or being seen — only as a patient; no one wants his primary identification to be that of a person with mental illness or with schizophrenia. Vocational rehabilitation (VR) is a set of services offered by vocational therapists to people with disabilities — mental or physical — to help them secure and maintain meaningful employment.
VR is a state program that is often free to people who meet the established criteria of need. Generally, clients have a long-term disability that is a barrier to employment and that can be overcome with the help of a vocational therapy or rehabilitation. (See Chapter 7 for more on VR.)
Vocational therapists also work privately, paid for by insurers. If you’re able to choose a vocational therapist, you want to look for someone who’s oriented toward the needs of the individual, who builds upon natural supports like peers and family, and who’s oriented toward real work as opposed to make-work (repetitive tasks that are boring and offer little opportunity to enhance self-worth).
One specialized type of vocational therapist is a job coach, an individual who works side by side with a disabled person to help that person acclimate to the workplace and the tasks that a particular job entails. Job developers work with programs to identify real work opportunities in the community for people with schizophrenia.
Recreation therapists
Recreation therapists are trained, certified, and registered and/or licensed to develop recreation resources and opportunities (also referred to as therapeutic recreation) for people with illnesses or disabilities. The goal is to restore, remediate, and rehabilitate the patient’s functioning. As part of the team, a recreation therapist designs individualized interventions that will contribute to the health and overall well-being of the person with schizophrenia, and that will help her cope with such common symptoms as boredom, depression, and anxiety.
The recreation therapist prescribes activities to meet people’s specific social, emotional, cognitive, and/or physical needs. These activities run the gamut and include fitness programs, photography, woodworking, horticulture, stress-management training, computer training, pottery-making, arts and crafts, games, relaxation training, working with animals, and more.
Rehabilitation therapists
Rehabilitation therapists include a broad range of mental-health professionals who work to assist people with vocational skills, job training, social skills training, and money management.
Some rehabilitation therapists (as well as psychologists) specialize in cognitive remediation, a teaching technique that tries to restore an individual’s ability to learn and function based on neuropsychological evaluation and intervention. (See Chapter 9 for more on cognitive remediation.)
Peer counselors
People who have experience living with various serious mental illnesses and who are in recovery can help by sharing their experience and serving as role models. Many municipalities and voluntary organizations have developed peer-counseling programs to provide support and inspiration, and many states train and/or certify peer counselors. These counselors generally work as members of a professional team and are respected for the unique perspective they bring to treatment and rehabilitation.
Sometimes mental-health peer counselors work in a group setting with multiple individuals. This is one type of self-help group (see Chapter 9).
Coordinating Treatment and Care
Most people with schizophrenia require a range of health, mental-health, and supportive services (including appropriate housing, decent medical care, access to entitlement benefits, and so on). These services need to be in place for an individual to live in the community with independence and dignity. Unfortunately, the service system is so complex and fragmented — and the symptoms of schizophrenia create so many barriers — that people with schizophrenia may not always have the ability or insight to recognize, access, and use the services they need.
Having one person to coordinate all needed care and services is an ideal solution to a disease that can seem to sprout new complications and dragon heads at every turn. Case management assigns responsibility to either an individual or team to coordinate all these services on behalf of one individual so that services are accessible and accountable.
The terms case management and clinical case management are generic ones, referring to a variety of different models. Some case managers work individually; others work as part of interdisciplinary teams. Some case managers link clients to services; others provide services directly (usually as a team). A case manager may or may not serve as the patient’s primary clinician.
One of the most popular and well-known models of case management is the Assertive Community Treatment (ACT) program. The first ACT program, called PACT (Program for Assertive Community Treatment) started in Madison, Wisconsin, in the late 1960s. At the time, it was referred to as a “hospital without walls.”
The defining characteristics of ACT programs include:
Use of multidisciplinary teams (which draw upon several areas of medicine and practice) rather than individual case managers
24/7 availability, 365 days a year, with a high frequency of contact
Low client-to-staff ratios (10:1 rather than 30:1 or more)
Assertive outreach to meet clients wherever they are in the community rather than in a clinic setting
Providing direct services (including emotional support and crisis intervention, as necessary) rather than brokering services only
Using peer counselors and family members as outreach workers
Promoting self-management skills, so the client can assume responsibility for her illness
A practical orientation that includes providing assistance with activities of daily living (ADLs) and linking to social-service benefits and entitlements
Some consumers find the use of the term case management derogatory. Rightly so, they preferred to be viewed as individuals rather than “cases.”
The results of empirical studies over more than three decades have shown that ACT programs reduce hospitalization, homelessness, and inappropriate housing; increase housing stability; control psychiatric symptoms; and improve quality of life. Most of the studies took place in urban areas and focused on the most severely ill subset of people with schizophrenia.
In fact, the ACT program model has been proven to work so well that it’s been implemented in most states, but not in the numbers necessary to serve all the people who could benefit from these intensive services. State and local programs often establish narrow eligibility criteria to meet the needs of those who are most disabled rather than all those who may benefit from such services.
Those who qualify for ACT programs generally include people who:
Have a history of multiple hospitalizations
Have been dually diagnosed with co-occurring mental health and substance use/abuse problems
Have mental illness and are involved with the criminal justice system Have severe mental illness and are homeless
Because of high demand and limited availability, most case management programs do not advertise or look for new clients. You need to contact your public mental-health authority at the state or local level to find out how you or your loved one can obtain these services. Be persistent — and if that doesn’t pan out, contact patient, family, or citizen advocacy organizations in your community to learn about these programs (see the appendix).
When families are case managers
One of the unfortunate legacies of deinstitutionalization (see Chapter 15) is that, by not providing funding for high-quality, coordinated resources for community care at federal, state, or local levels, families of people with serious mental illness have become de facto case managers of last resort, trying to patch together different resources for their family members.
Families assume the de facto roles of housing and case management providers, performing a host of critical functions in support of their loved ones, including:
Monitoring therapeutic and adverse effects of medications
Providing companionship to fill empty hours
Offering housing, money, or other crisis assistance to avoid disruption and dislocation
Securing psychiatric hospitalization (when necessary)
Serving as individual advocates for their family members (by helping them access high-quality mental healthcare)
Serving as systems advocates, trying to improve the overall mental-health system to assure availability, access, adequacy, and coordination of health, mental-health, and social-welfare services
These overwhelming responsibilities leave caregivers little time for work, outside interests, or their own social relationships, and it can exacerbate their feelings of loss. This is an emotionally exhausting and difficult role for any parent, sibling, spouse, or friend to assume. Aside from their having to help the patient with day-to-day tasks, they have to learn about the range of resources available in the community. When family members are placed in this role, it often adds another layer of complications to the already strained dynamics between them and their loved ones.
Bottom line: You and your loved one will be fortunate if you can find a case manager who can assist you.
Although case-management programs are costly, multiple studies have shown that they reduce the utilization of more expensive services such as hospitalization, emergency-room use, and incarceration in jails. Equally important, the programs improve quality of life for both the person with schizophrenia and his family.
Redrafting the Team: When Things Aren’t Working
If your team is floundering, you or your loved one are likely to be floundering, too. Schizophrenia is a complex disease that requires integrated (coordinated) treatment and that takes the input and cooperation of many people.
About one-third of cases of schizophrenia are more complex and difficult to treat than most. If your loved one has treatment-resistant schizophrenia (schizophrenia whose positive symptoms don’t respond to currently available medications), it may seem like your team isn’t working well, when in reality the seriousness of the disease and the limitations of treatment are the problems, not the team members and certainly not the individual.
On the other hand, things may be going badly because you have the wrong team members, or because they’re not working together. You’re the one most likely to recognize problems, and you’ll probably also be the one who has to figure out how to fix them.
Treatment resistant is a term used to describe symptoms that do not respond to conventional treatments. Sometimes people confuse the term treatment resistant and incorrectly use it to describe patients who are not adherent to treatment.
Spotting the signs of team dysfunction
How do you know when the problem is with the team rather than with the person with schizophrenia? Some of the signs that the team may be adrift include the following:
Failure to listen: It’s vital that all members of the team (including psychiatrists) be active listeners, so they understand their patients’ needs and preferences and respect them as individuals. Cookie-cutter approaches to treatment generally don’t work and make patients and family members feel dehumanized.
Failure to communicate openly with the patient and/or the family:
The concept of shared decision-making, a tool now gaining popularity in general medicine, encourages patients and doctors to become active partners in sharing information, clarifying medical options, and choosing or redirecting a course of care. The need for this approach is particularly important in the care of patients with schizophrenia because of the long-term nature of the disorder, the complexities of treatment, the need to prevent learned helplessness (the tendency among patients to become passive), the need to encourage compliance, and the role of family and friends in supporting the individual. Both patients and families have the right to expect periodic meetings with the team to discuss and assess progress.
Poor communication between team members: Members of the team need to be talking to each other periodically (or at least communicating by e-mail). For example, if you realize that the psychologist who meets with your loved one every week has neglected to report troublesome side effects to the psychiatrist (who is overseeing medication) or that your loved one seems to be on a progressively downward spiral and that the psychiatrist has no clue, you know there’s a communication problem.
A team with too many pitch hitters or staff on the bench: Some turnover of staff is to be expected, but if a program is constantly losing staff members, it’s a sign that something’s amiss. This is particularly important for patients with schizophrenia who find it difficult to forge new relationships and adapt to change. If the primary clinician changes every few months, your family member may receive disjointed or fragmented care. If a program seems unstable in terms of its ability to recruit and retain staff, you may want to look for other options.
Gaps in treatment or care: For example, if a program provides no opportunities for the patient to participate in rehabilitative or vocational opportunities, or other vital support services are missing, you need to assess why that’s happening and how that gap can be addressed.
Missing the mark on the appropriate level of expectation: The bar for expectations shouldn’t be set too high or too low. Ideally, you want the team to set realistic and achievable goals. The team has to have experience and wisdom to discern whether a patient who appears to be lazy is really experiencing negative symptoms associated with the illness (see Chapter 3), has low-self-esteem, is depressed, or is simply giving up and needs to be encouraged to do more.
Working to improve your team
After you’ve identified a problem, you need to find ways to fix it. If you feel that something’s amiss, here are some tips on how to change the team in a positive way:
Find the right person to talk to. If the problem is with a private practitioner, call or e-mail him and explain your concerns. You’re paying the doctor or other professional directly, so you have some degree of leverage. If the problem is with a program, start at the bottom before you move up the ladder — for example, if the problem is with a mental health counselor, start with that person before going to her boss.
Whenever you or your loved one enrolls in a new program, ask who you should speak to in the event of a problem. Many facilities, including hospitals, have patient advocates, patient-rights coordinators, or ombudsmen.
Choose the best way to communicate. It may be in person, over the phone, by letter, or by e-mail, depending on your preferences, the preferences of the other person, and the options available to you. If you’re meeting in person, always address the person by name, arrive on time, keep it simple, speak firmly but audibly, and don’t shout.
Put your best foot forward. Even if you’ re angry or hurt on the inside, remember that the problem may be a simple misunderstanding. Stay calm, never threaten, but remain firm and persistent. Use praise, humor, and diplomacy where appropriate, and don’t forget to listen to what the other side is saying. You want to be part of the solution, not part of the problem.
Many families tell us that simply by saying that they’re members of NAMI opens the door so that professionals are willing to listen and meet with them. Instead of name-dropping, drop NAMI into the conversation!
‘ Put it in writing. Keep records of your communications. Include the date, the person you spoke with, and what you both said. If your request was accommodated, follow up with a thank-you note. If it wasn’t, after an appropriate wait, follow up with a reminder.
Resort to desperate measures. If you don’t feel like you’re being heard or if you feel the needs of your loved one are being ignored, file a report with the appropriate oversight agency. You may be able to figure out who and where by calling your city, county, or state mental-health authority. In most states, the state regulates and licenses all mental-health programs.
Contact the state agency overseeing protection and advocacy programs (see Chapter 7) and communicate with your elected officials to see if they can help you. In extreme cases (for example, if there are conditions threatening the health and safety of vulnerable people), the best approach may be to contact the media.
The Americans with Disability Act (ADA) ensures that people with mental illnesses have legal protections against discrimination in workplace, housing, and residential programs (including hospitals). For more on the ADA, see Chapter 7.
Don’t sweat the small stuff. Keep in mind that most people who work in human services are motivated by the desire to help people rather than make money, and that many of them work in difficult settings with only limited resources. Try to always give mental-health workers the benefit of the doubt and keep things in perspective.
Remember to reward successful efforts. It’s always motivating and heart-warming when a mental-health professional receives a note from a consumer or family member telling of their successes. Don’t forget to tell your team when good things happen; it helps everyone retain their enthusiasm for working through the rough spots.
Never give up. As an important corollary to the preceding bullet, remember that, as with Dorothea Dix who reformed mental hospitals in the mid-1800s, it only takes one committed person to initiate change. If you’re having problems with a clinician or program, you probably aren’t the only one, and your efforts may help many people in similar circumstances.
