Self-Advocacy and Negotiations (#1083)

 

Thursday, July 26, 2007

 

By

Pat Risser (parisser@att.net) and

Scott Snedecor (Scott.Snedecor@state.or.us)

 

 

The consumer-driven self-advocacy movement for recovery and transformation has awakened the need for change at all levels of the mental health and substance use system. One particular call for change encourages consumers and their families to become advocates for their rights and treatment needs. This interactive workshop will engage participants in identifying and developing strategies for self-advocacy and negotiation within the mental health and substance abuse system. Topics will include developing tools for active participation in the treatment team and treatment planning process. Role-play and other forms of practice will help to reinforce these tools and strategies. There will also be a discussion of the consumer-driven progress accomplished thus far, and areas of yet-needed change for achieving true systems transformation.

 

Learning Objectives:


Self-Advocacy

 

Self-Advocacy means working by yourself, or with someone's help, to get what you need.  Self-advocacy at it's most basic means standing up for yourself.

 

Freedom Self-advocacy curriculum can be found at:

http://www.mhselfhelp.org/freedom/index.html

 

Important Points of Self-Advocacy

 

    Kno w and assert your rights

    Write and maintain an "advance directive"

    Research your medications and keep records of what you've used

ask a pharmacist for fact sheets or "drug insert" information

talk to other people who have used the same medications

at clinics

drop-in centers

self-help groups

on the internet

look in the PDR or similar books

    Take an active role in your own treatment

    Take a class in "Assertiveness" training

    Know what's in your medical records

You may want to question because of:

  Feelings that treatment is (or was) inadequate;

  Concerns that emotional problems have been incorrectly diagnosed;

  Worries about information that might be shared with other parties such as insurers;

  Being told that certain medications/treatments are required (or not permissible); or

  Wanting to leave (or continue) hospitalization.

In many states, people have the right to see their own medical records, unless viewing the records would be harmful.  This is a vague standard and is often invoked to deny access to records.  Other factors that might be covered by your state's law include:

  Whether the right is invoked during or after treatment;

  Whether the records are held by a state-funded facility;

  What type of facility holds the records (e.g., hospital or personal care home);

  Whether the records are medical, psychiatric, or personal data; or

  Whether consumers have the right to correct the records or append information.


 

An Overview of Self-Advocacy Skills

 

 

Problem Solving

 

1. Break the problem down into smaller pieces.

2. Find out who's causing the problem.

3. Set a goal for what you want to happen.

4. Develop an action plan.

 

Verbal Communication

 

1. Outline what you want to say.

2. Practice saying it.

3. Have a support person.

4. Be assertive—insist on what you want.

5. Don't attack or insult.

6. List en actively to the other person.

7. Negotiate for what you want.

8. Keep records.

9. Follow up.

 

Verbal Communication

(Face to Face)

 

1. Be on time!

2. Sit up straight.

3. Don't fidget.

4. Dress and groom neatly.

5. Maintain eye contact.


Self-Advocacy Skills

 

      Believe in yourself as someone who is worth self-advocating for.

 

      Improve your assertiveness skills by working with other people to improve these skills.

 

      Take every opportunity to educate yourself about issues at local, regional, state and national meetings.

 

      Create your own resource library and contacts list. Use the Internet at your library to do research.

 

       Save all documents related to health care, insurance, benefits, income or laws and regulations.

 

      Get information about diagnoses, treatments, and medications.

 

      Learn your rights (check with your local Protection and Advocacy)

 

      Read every viewpoint, and then decide for yourself what you want to do. Form your own opinions and develop your own goals.

 

      Problem solve: break down the problem into smaller problems or steps.

 

      Develop a solution- determine what you want to happen.

 

      Develop a plan for handling the obstacles that you encounter.

 

      Plan a strategy- consult with others who may be more objective.

 

      Spend some time reflecting on your plan before you do it. Do not act impulsively.

 

      Take into account various problem solving strategies:

      Making phone calls

      Holding an informal meeting

      Writing a letter of complaint

      Filing a formal complaint

      Contacting key officials

      Going to city or county council meetings

      Write letters to the editor

      Write letters to your legislators, senators and congressman

 

      Treat others with dignity, compassion and respect; listen to their views and challenge them when necessary. 

 

      Insist that others treat you well, even when you are saying things that they don't want to hear.

 

      Stay as calm as possible when speaking out.  If you "lose your cool" you will be accused of being "just another mental patient."  You can let your frustrations out when you are alone or with good friends.

 

      It takes many people to create a system change, not just one very strong individual.  Beware of people who want to be the only one in charge or speaking out.  Circumvent them as kindly as possible.

 

      As you find your voice you may be tempted to go on and on.   If you do this, you silence the voices of others that also need to be heard.  It is the voices of many, not just one, that will make the difference!


Self-Advocacy in Person

 

When preparing to meet with someone in person:

 

      Write down the appointment as soon as you make it.  Once you schedule the appointment, you have to keep it.  The person you are meeting with may have other commitments; if you do not keep your appointments, that person may decide to spend more time with people who are keeping their appointments and following through.

      If you absolutely cannot make a scheduled appointment, call in advance to reschedule.  Try to give the other person as much notice as possible; you should not cancel a meeting on the same day unless it is a sudden, unanticipated emergency.

      When you schedule the meeting, inquire if there is any type of documentation that you will need to bring to your meeting.  Ask if you must meet certain qualifications in order to get what you're asking for.  If the other party initiated the meeting, make sure that you understand the purpose of the meeting completely.

      Another important step in planning for a meeting at which you will advocate for yourself is to find a friend who will come with you.  The presence of another person will help to assure that the people you're meeting with behave in a civil fashion.

      In preparing for the meeting, think ahead about

      What do I want to happen at the meeting?

      What do I want to learn at the meeting?

      What could happen as a result of the meeting?

      Think through your strategy for the meeting.  You should prepare an agenda for what you would like to say, what you would like to ask the other person, and how you would respond to the other person's suggestions of what they might like to happen.

      Bring to the meeting copies of all relevant documents.  If you will be citing particular laws or regulations, bring photocopies of those as well.  Don't just say, "There's a law somewhere."  Give the person a chance to look at the law.  By demonstrating that you know your rights, it makes it much more difficult for the other person to ignore your rights.  It also often makes them treat you with a more respectful attitude in negotiating for what you want to come out of the meeting.

 

At the meeting:

 

      Show up on time!!!  Dress and groom yourself appropriately for the meeting.  It results in you being treated with more respect and gives the other person less power in the situation. 

      Shake hands firmly while you look the other person in the eyes.

      Do your best to maintain eye contact.  It helps you to maintain control over the meeting.

      Use good posture.  It conveys confidence in what you are seeking and shows respect for the other person.

      Try not to fidget.  Wringing your hands or squirming in your chair conveys your nervousness, making the other person feel more confident in his position.  You can practice body language skills before the meeting.

      Ask for clarification if you do not understand something.  Restate the other person's position so that you both understand what the other person is offering or requiring.

      Take careful notes of what is said.  Write down:

      Any promises the other person makes

      Any actions that you must take.

      Any explanations the other person makes for granting or denying your requests

      Anything the person says that is supportive of your position.


Self-Advocacy in Writing:

 

     The shorter the letter, the better.  Keep a copy or photocopy in your files.

 

     Follow the standard format used for business letter.  Include your return address, the date, the other person's address, a greeting, and signature.  You may want to "cc" the letter to the person's boss; if you do not "cc" someone, it is easier for the person to put your letter aside.  However, doing so before you give them an opportunity to resolve the problem may show anger on your part, and end up hurting you.

 

     Open the letter by explaining to the recipient why you are writing.

 

     Pay attention to the tone of your letter; do not be rude or insulting.  Simply state what is wrong and what the recipient can do to rectify it.

 

     Include photocopies of relevant documents, or offer to provide whatever documentation may be necessary.

 

     Explain the reason why you are asking for action by the recipient. 

 

     If the action needed is urgent, explain why.

 

     If applicable, summarize the steps that you have taken to try to resolve the problem.

 

     If you are considering legal action or a formal complaint, note that you are considering it.  However, reserve this tactic for situations in which you feel that you have a valid case and could follow through; other wise, the other party could call your bluff.

 

     In the closing paragraph, give a time by which you expect the recipient to respond or take action.  This should be a reasonable amount of time in relationship to the urgency of the situation.

 

     Also, in the closing paragraph, thank the recipient, or if the recipient has not proven helpful so far, then express your hope that they will resolve the matter as soon as possible.

 

     For a few extra dollars, you can send your letter via certified mail, return receipt requested.  Not only will this make your letter stand out to the recipient, the recipient will know that you will have proof when the letter arrived.

 

     Do not hesitate to ask a friend to check your letter for errors in spelling or grammar; also their objective advice can help assure that the letter is less antagonistic.

 

     One source of assistance in letter writing may be your state Protection and Advocacy system.


Hints for Writing a Better Letter

 

u      Follow standard format.  Include your name and return address, as well as that of the person receiving the letter.

 

u      Explain what you want.  Don't just complain; suggest a solution.

l       Open by explaining to the recipient why you are writing.

 

u      Include documentation.  Send a photocopy whenever possible.

 

u      Explain reasons action is needed.  Explain why the problem is harming you.

l       Explain the reason why you are asking for action by the recipient. 

l       If the action needed is urgent, explain why.

 

u      Explain steps you've taken.  Show that you're working toward a solution.

 

u      Set timelines for response or action.  Show that you mean business.

l       In the closing paragraph, give a time by which you expect the recipient to respond or take action.  This should be a reasonable amount of time in relationship to the urgency of the situation.

 

u      Watch your tone.  Don't threaten or insult.

l       Also in the closing paragraph, thank the recipient, or if the recipient has not proven helpful so far, then express your hope that they will resolve the matter as soon as possible.

l       When writing your letter, pay special attention to your tone.  Put yourself in the place of the intended recipient.  Respect their point of view. By not antagonizing or insulting the recipient of the letter, you reinforce that you are in the right and that your request should be granted.

 

u      Keep a copy.  Good record keeping is important.

 

u      Proofread!  Ask a friend if you need help.

l       You shouldn't hesitate to ask friends for help in writing letters.  You can rely on friends to help with the writing and to check your letters for errors in spelling or grammar.  Having someone else to be supportive and objective can help make the letter less antagonistic.

 

u      Send the letter.  For a few extra dollars, you can send a letter via certified mail, return receipt requested.  Not only will this make your letter stand out to the recipient, you'll know exactly when the letter arrived.  Depending on the severity or urgency of the situation, you might also consider faxing your letter or using express delivery.

 


Self-Advocacy on phone

 

      Be assertive by being persistent enough to get in touch with someone who can help you. One alternative is to call once a day until they realize you won't stop calling until they resolve the situation.

 

      Being a persistent and tireless advocate for yourself does not give you the right to shout at, insult, or attack the character of others. Assertiveness is being able to say what you need in a respectful and dignified manner.  If needed, use your support group or therapist to work on controlling your anger. By managing your anger, you can avoid a developing reputation as a "difficult caller."  Being assertive without raising your voice or being rude is a skill of an effective advocate.

 

      Keep accurate and complete records of your telephone conversations.   Often your records will be the best documentation of your attempts to resolve a situation or of another party's suggested solutions.  Keep an accurate record of every person with whom you speak, their name, title, and what they said.  Sometimes it will str engthen your position if you can demonstrate that the other party was not helpful, so document every time that you couldn't get through to someone on the phone, as well as when you left messages for that person.  Doing so will prevent someone from saying that your inactivity is the cause of the problem.  Use the Sample phone log as your guide.

 

      Ask for clarification if the person says something you do not understand.  Leave the door open; state that you would like to reserve the right to submit additional information.  Do your research and know the standards:  "My insurance policy says that I have the right to appeal this decision, and I would like to appeal."

 

      If the person to whom you are speaking cannot meet your request, or fails to resolve your problem to your satisfaction, ask to speak with that person's supervisor.  Go up the chain of command slowly; going to a supervisor before giving someone a fair chance to resolve your problem can create bad feelings.   If you go up the supervisory ladder one level at a time, you give more people the opportunity to give you what you want.   If you go straight to the top, and that person says no, you probably won't get what you're after.

 

      If the person cannot respond to your request immediately, ask when they will get back to you, and the date on which you can expect action on what you've requested.  If the person promises a specific action, ask when that action will be taken.  Record this information in your phone log.

 

      Mark a calendar to keep track of dates when action is promised. If you have not heard or seen results by the agreed upon date, you should call back. Be polite, but firm.  Remind the person that he promised to respond or take action by a certain date, and ask why this has not happened.

 

      Seek a new contact person if the one with whom you have dealt:

      Is new to the job based on what the person has said or your best guess

      Has not gotten in touch with you after you have left three messages

      Has told you three times he must appeal to a supervisor for information or authority, without results

      Hesitates before answering important questions

      Asks you to supply the same information or file the same forms more than once

      Or is defensive, moody, or combative without being provoked by you.

 

       One way to ensure your request gets special attention is to follow a phone call with a fax summarizing the action requested and the agreed upon follow up.  If the person does not seem to be responding adequately, send the fax to the person you have spoken with and also to his supervisor.  At the bottom of the fax, write "cc:' followed by the supervisor's name so that the employee knows that the supervisor has also seen the fax.


 

Self-Advocacy Negotiation:

 

      Lead with the strongest part of your argument.  If you are dissatisfied with the treatment you are receiving, you might start by pointing out that a staff person has violated your patients' bill of rights.

 

      Keep your presentation short by focusing on the facts.  Often, we want to tell our life story when we are trying to spur people to action.  But by taking too much of someone's time, you run the risk of alienating that person.  Instead, focus on details that are the responsibility of that person.  In other words, if you are experiencing problems with a certain program or service, focus on that program or service rather than other problems that you might be experiencing.

 

      Focus on remedies, not complaints. Unless your goal is to simply make someone feel sympathy for you, then you should have an action plan for what you want to happen.

 

      Control your emotions.  No matter how much the other person upsets you, don't resort to yelling or name-calling.  If you need to ask for a break to compose yourself, do so.  "Blowing up" during the meeting reflects poorly on you, and often gives people an excuse to deny what you want.

 

      Have in mind a minimum that you are willing to accept.  To be a good negotiator, you should ask for more than you really want, but keep in your own mind a minimum that you would be willing to accept.

 

      Acknowledge the other person's position.  Demonstrate that you understand the limitations faced by the other person.  This will help keep your demands realistic and make the other person feel more comfortable in negotiating with you.

 

      Reiterate your position using "I" statements.    Say "I need a medication with fewer side effects" or "I need a safer place to live."

 

      Give the other person a reason to want to help you.  He might want to avoid complaints to his supervisor, negative publicity, liability issues, or just give in to stop hearing from you. 

 

      Ask for the chance to offer additional information at a later time. Meetings sometimes put pressure on us, making it difficult to remember everything we wanted to say.  You might wish to reserve the right to provide additional comments later.

 

      Restate any actions decided upon.  If the other person makes any promises to you, restate them as you end your meeting.  If you make promises, restate those as well, so that you are sure of what you need to do.

 

      Set a timeline for action.  A promise to " look into the problem "or "get to it as soon as we can" doesn't help you much.  Insist on a timeline for action, then contact the person if deadlines are not met.

 

      Be prepared to walk out without resolving the issue.  If the meeting is not going well, don't agree to something just because of the urgency of the moment.  Be prepared to politely get up and walk away.

 

      After the meeting, write a short letter thanking the person for his time.  In your letter, you should also restate any agreements that were made in the meeting.  Read over your meeting notes and make sure you understand them.  Keep your meeting notes with other documentation, such as copies of letters and your phone log.  If the person with whom you met promised results by a certain time and these things do not happen, then you should contact the person.  When you call or write to the person, be sure to refer to the date of the meeting and restate what you had agreed upon.


Common Obstacles Faced by Mental Health Consumers

 

    You wanted to change your psychiatrist or therapist, but you were told that you could not do so.

 

    You were trying to go back to work, and someone asked questions about your medical history.

 

    You wanted to leave a hospital, but you were told that you were not ready.

 

    You wanted housing, but you were told that none was available.

 

    You wanted to change your case manager, but you were told that you couldn't.

 

    You needed to take time off from a job, but your employer wasn't  understanding.

 

Responses to Obstacles

 

    Do research to support your position

 

    Learn Self-Advocacy Skills

 

    Treat others with dignity, compassion and respect; listen to their views and challenge them when necessary

 

    Insist that others treat you well, even when you are saying things that they don't want to hear

 

    Stay as calm as possible when speaking out.  If you "lose your cool" you will be accused of being "just another mental patient."  You can let your frustrations out when you are alone or with good friends.

 

    It takes many people to create a system change, not just one very strong individual.  Beware of people who want to be the only one in charge or speaking out.  Circumvent them as kindly as possible.

 

    As you find your voice you may be tempted to go on and on.  If you do this, you silence the voices of others that also need to be heard.  It is the voices of many, not just one, that will make the difference!


WEB SITES:

 


Addiction issues:

http://www.jointogether.org/home/

 

American Association of People with Disabilities

http://www.aapd-dc.org/

 

Association for Persons in 

Supported Employment (APSE)

http://www.apse.org

 

American Association of Suicidology

http://www.suicidology.org/

 

Bazelon Center for Mental Health Law

http://www.bazelon.org

 

Boston University Center for

Psychiatric Rehabilitation

http://www.bu.edu/sarpsych

 

Center for Substance Abuse Treatment:

http://www.samhsa.gov/centers/csat/csat.html 

Center for Mental Health Services:

http://www.mentalhealth.org/        

 

CMHS Consumer Affairs E-News:

http://www.mentalhealth.org/consumersurvivor/

 

Co-occurring Disorders

in the Justice System:

http://www.gainsctr.com/               

 

Consortium for Citizens with Disabilities

http://www.c-c-d.org

 

Consortium for Citizens with Disabilities

 Housing Task Force

http://www.c-c-d.org/tf-housing.htm

 

Consumer Organizing and Networking

Technical Assistance Center (CONTAC)

http://www.contac.org

 

Corporation for Supportive Housing

http://www.csh.org/

 

Depression and Bipolar Support Alliance (DBSA)
http://www.dbsalliance.org/

 

Disability info. gov

http://www.disabilityinfo.gov/

 

Evidence Based Practices in Mental Health

http://www.mentalhealthpractices.org/

 

Federation of Families for

Children's Mental Health

http://www.ffcmh.org/Eng_one.htm

 

Housing Center for People with Disabilities

http://www.tacinc.org/housingcenter.html

 

International Association for Psychosocial

Rehabilitation Services (IAPSRS)

http://www.iapsrs.org

 

International Center for

Clubhouse Development (ICCD)

http://www.iccd.org

 

National Alliance for the

Mentally Ill (NAMI)

http://www.nami.org

 

 

 

National Alliance for Research on

Schizophrenia and Depression

http://www.narsad.org/

 

National Association for Rights Protection and Advocacy

http://www.narpa.org

 

National Association of State Mental

Health Program Directors (NASMHPD)

http://www.nasmhpd.org

 

National Association of Protection and

Advocacy Systems (NAPAS)

http://www.protectionandadvocacy.com

 

National Council on Disability

http://www.ncd.gov

 

National Depression and

Bipolar Support Alliance (National DBSA)

http://www.dbsalliance.org/

 

National Low Income

Housing Coalition

http://www.nlihc.org/

 

National Mental Health

Association (NMHA)

http://www.nmha.org

 

National Mental Health Consumers'

Self-help Clearinghouse:

http://www.mhselfhelp.org/            

 

NMHA--Consumer Supporter

Technical Assistance Center

http://www.ncstac.org/

 

National Empowerment Center

http://www.power2u.org

 

President's Committee on

Employment of People with Disabilities

http://www50.pcepd.gov

 

President's New Freedom

Commission on Mental Health

http://www.mentalhealthcommission.gov        

 

Social Security

http://www.ssa.gov/disability/

 

Suicide Prevention Action Network of USA

http://www.spanusa.org/

 

Substance Abuse and Mental

Health Services Administration:

http://www.samhsa.gov/

 

Twelve step programs:

http://www.onlinerecovery.org/12/

 

The White House:

http://www.whitehouse.gov/           

 

U.S. House of Representatives:

http://www.house.gov/

 

U.S. Senate:

http://www.senate.gov/


Reclaiming your power during medication appointments with your psychiatrist

 

By Patricia Deegan, Ph.D.

 

Meeting with a psychiatrist during "medication appointments" is usually a very disempowering experience. The meetings usually last for 15 or 20 minutes. During the meeting we are expected to answer a few perfunctory questions and to leave with prescriptions for powerful drugs that can dramatically alter the quality of our lives. In these meetings the psychiatrist assumes a position of power and we usually fulfill the expected role of being a quiet, unquestioning, passive patient. Subsequently we will be praised for merely being compliant or scolded/punished if we fail to comply with prescribed medications. Over the years I have developed a number of strategies for changing the power imbalance during medication meetings with psychiatrists. I would like to share some of these strategies with you.

 

Strategy #1: Learn to think differently about medication

 

1.  There are no magic bullets. Recovery is hard work. No pill can do the work of recovery for me. If I sit back and wait for a pill to make me better, I will not get better. If I patiently wait for a drug to cure me I may become a chronic, helpless patient who swallows pills on command, but I will not recover. Recovery means taking an active stance towards the problems and challenges I face.

 

2.  Medications are only a tool. Psychiatric medications are one tool among many other tools that I can use to recover. Physical exercise, eating well, avoiding alcohol and street drugs, love, solitude, art, nature, prayer, work, and a myriad of coping strategies are equally important to my recovery.

 

3.  Using medications is not a moral issue. There was a time when I thought using medications was a sign of weakness or that people who no longer used medications were better than I was. I no longer think this way. There is no right or wrong way to recover. What matters to me is taking care of myself in such a way that I have a chance to become the best person I can be. There are periods of time when I do not use medications and there are times when I do. It is a personal choice that I make.

 

4.  Learn to use medications. Today I do not simply take medications. Taking medications implies a passive stance. Rather I have learned to use medications as part of my recovery process. Learning to use medications within the recovery process means thoughtfully planning and following through with medication trials, medication reductions and/or medication withdrawal.

 

5.  Always use medications and coping strategies. There are many non-drug coping strategies that can help alleviate symptoms and distress. Take the time to learn strategies for coping with voices, delusions, paranoia, depression, obsessive thinking, self-injury, flashbacks, and so forth. I have found that learning to use a variety of non-drug coping strategies helps to minimize the amount of medications I take or, with practice, can actually eliminate the need for medications.

 

6.  Learn about medications. It is easy to feel intimidated by all the big words and technical jargon that get used about psychiatric medications. However, there are a number of ways that I have found helpful in getting reliable and accessible information about the medications I am considering using. I am careful to ask the psychiatrist I am working with about the medication he/she is prescribing. However, I often find this information insufficient. A great source of information is talking with other people who have used the drug. Perhaps the cheapest and easiest way to get more information is to ask a pharmacist who will give you a written fact sheet describing what the drug is supposed to do, what the unwanted effects are, and precautions including drug interaction information. These drug fact sheets are written in non-technical jargon, but unfortunately leave out a lot of detail that might be important to you. If this is the case you can always ask your pharmacist for drug-insert information. The drug-insert information is essentially the same information that is contained in the Physicians Desk Reference (PDR). It is printed on a small roll of paper and inserted in the box of medications that the pharmacist receives. There is a lot of technical jargon in the insert but the information is more thorough than the fact sheet. In addition you can go to the library and use the Taber's Cyclopedic Medical Dictionary to look up words you are not familiar with. There are also a number of good books that can help you get answers to your questions. These include Clinical Psychopharmacology Made Ridiculously Simple (John Preston and James Johnson, published by MedMaster, Inc.) or Instant Psychopharmacolgy (Ronald Diamond, published by W.W. Norton) or Toxic Psychiatry (Peter Breggin, published by St. Martin's Press) or Natural Healing for Schizophrenia (Eva Edelman, published by Borage Books, Eugene Oregon) or Living Without Depression & Manic Depression (Mary Ellen Copeland, published by New Harbinger). If you have access to the Internet there are lots of resources including these:

*  Dr. Bob's Psychopharmacology Tips at: http://uhs.bsd.uchicago.edu/~bhsiung/tips/tips.html

*  Healthtouch, with an excellent data base of over 7,000 prescription and over the counter drugs at: http://www.healthtouch.com/level1/p_dri.html

*  Medline at: http://www/ncbi.nlm.nih.gov/pubmed.

 

Strategy #2: Learn to think differently about yourself

 

1.  Trust yourself. You know more about yourself than your psychiatrist will ever know. Begin to trust yourself and your perceptions. Sometimes I found it hard to trust my perceptions after being told that what I felt, thought, or perceived, was crazy. Part of recovery is learning to trust yourself again. Even during my craziest times there was a kernel of truth in all of my experience. If you are experiencing unwanted drug effects such as a feeling of apathy, constipation, loss of sex drive, double vision, or the like, trust your perception. Don't let others tell you that such side effects are "all in your head." Check with the pharmacist, or with friends who have used the drugs, and check the books or the Internet. Chances are that you are not the first person to have these drug effects.

 

2.  It's your recovery. Too often I have heard people say that "the drug made me feel better." Don't give all the credit to the chemical! Even if you found a drug helpful, look at all the things you have done to get well and stay well. A drug can sometimes open a door, but it takes a courageous human being to step through that door and build a new life.

 

3.  Your questions are important. Anyone who has been on psychiatric drugs for a period of time is probably going to ask these important questions:

*          What am I really like when I am off these medications?

*          What is the "real me" like now?

*          Is it worth taking these medications?

*          Are there non-drug methods I can learn to reduce my symptoms instead of using medications?

*          Have my needs for medications changed over time?

*          Do I have tardive dyskinesia that is being masked by the neuroleptics I am taking?

*          There are no long-term studies on the medication I use. Am I at risk? Do I want to take the risk of not knowing the long-term effects?

*          Am I addicted to these medications?

*          Has long-term use of these medications resulted in memory loss or decreased my cognitive functioning?

 

There is nothing crazy about having such questions. What is unfortunate is that most mental health professionals do not recognize that these questions are to be expected. A recovery-oriented system would have detox centers and other supports available so that people could plan a rational withdrawal from medications in order to explore these important questions.

 

Strategy #3: Think differently about psychiatrists

 

1.  Most psychiatrists are too busy for our own good. We would be wrong to assume that most psychiatrists have a thorough knowledge of their clients' treatment history. In an age of managed care psychiatrists have less and less time to spend with more and more clients. Many psychiatrists have never read the full case record of the people they prescribe medications to. Even fewer could identify all of the various drugs and drug combinations that you have tried over the years and what the outcomes of those drug trials were. In light of this I have found it important to begin to keep my own record of what medications I have tried, for what symptoms, at what dosages, and for what period of time. Whenever a psychiatrist suggests a new drug or a new dose, I always check my record just to be sure it hasn't been tried before. I don't want to repeat ineffectual or even harmful drug trials.

 

2.  Psychiatrists often have conflicting interests. It would be comforting to think that psychiatrists were serving our individual interests. But this assumption would be naive. Many psychiatrists complain of the competing interests that tear at the ethical fabric of their practice. Especially if I am working with a psychiatrist who is part of a managed care system, I feel it is important to ask what, if any, caps on services he/she is working under. In other words, some psychiatrists receive their paychecks from managed care corporations that require them to prescribe one type of drug rather than others that are expensive. If this is the case, we should have this information!

 

3.  Sometimes psychiatrists are wrong. Most psychiatrists do not encourage us to seek second opinions regarding diagnosis, medications, or other somatic treatments such as ECT. However, at certain times I have found it important to seek out a second opinion. Even with a managed care plan or if you are on Medicaid or Medicare, it is possible to get a second opinion on an issue you deem important. It can take a lot of work, phone calls and even a friend to help advocate, but it can be done and you are worth it!

 

4.  Psychiatrists are not experts on everything. Most psychiatrists believe in the primacy of biology. Most have a mechanized and materialist world-view. Thus, chances are that if you have a diagnosis of major mental illness and you talk to your psychiatrist about ecstatic spiritual experiences, mystical experiences, psychic abilities, or similar experiences, these will be perceived as crazy or symptomatic. One way of taking back your power is to recognize that you have control over what you share with a psychiatrist and what you choose to keep private.

 

A meeting with a psychiatrist need not be a confession! Talk with mystics about your mystical experiences. Talk with psychics about telepathy, etc.

 

Strategy #4: Prepare to meet with your psychiatrist

 

1.  Set your agenda for the meeting. I have found it important to set my agenda for a meeting with a psychiatrist rather than simply reacting to what he/she does or does not do. In order to set an agenda it is important to define your immediate goals. Possible goals might include starting medication, discussing a medication change, planning for a medication reduction, planning for a medication withdrawal, checking for tardive dyskinesia, finding a solution for unwanted drug effects, or reporting on a medication trial. Try, if possible, to set one goal for each meeting.

 

2.  Organize your thoughts and concerns. I have also found it important to prepare ahead of time for a meeting with a psychiatrist. I have developed a form that helps me organize my thoughts and to put things in writing. A copy of this meeting preparation guide is available through the National Empowerment Center.

 

3.  Be specific. The more specific we can be about our concerns, the more control we can exercise during a meeting with a psychiatrist. For example, if a psychiatrist begins a meeting by asking, "How is that new medication working?" a vague answer would be "Oh, it's helping a little I think." Imagine how empowered you would feel if, instead, you were able to answer, "Well, before I began this medication trial I was so depressed that I missed seven days of work, spent 14 days in bed and lost 3 pounds. But during the last two months, since starting the drug and using the new coping strategies, I have only missed 2 days of work, have regained the weight I lost and I have only spent 4 days cooped up in my apartment." Notice how this level of specificity puts you squarely in the driver's seat of your life and positions the psychiatrist as a co-investigator, as opposed to being the authority over your life. Getting this specific may sound difficult, but it is not. It simply requires that you learn how to record your medication and/or self help trial on a daily basis and that you summarize this information before seeing your psychiatrist. A guide to recording your medication and/or self-help trial is available through the National Empowerment Center.

 

4.  Write your questions down. Write your questions down before seeing your psychiatrist. Bring the questions with you to the meeting. My experience is that these meetings can be stressful and that having my questions written down allows me to relax a bit. If you are considering trying a new medication, be sure to ask the following questions:

*          Exactly how will I know if this medication is working for me?

*          How long before I should start to notice an effect from this medication?

*          What are the unwanted effects or side effects associated with this drug?

*          If I should experience unwanted side effects, what should I do about it?

*          How can I contact you if, during this medication trial, I have questions or concerns I want to check out with you?

 

5.  Role-Play. Sometimes it can be helpful to role-play with a friend or someone you trust before seeing your psychiatrist. Learning to talk to a psychiatrist from a position of personal power is a skill that can be learned and must be practiced. Be patient and give yourself time!

 

Strategy #5: Take charge of the meeting

 

1.  Bring a note pad and pen to the meeting. Most of us have had the unnerving experience of talking to a psychiatrist while he/she busily jots notes that we never get to see. Bringing your own note pad and pen, and taking your own notes is a good way to break the habit of being a passive patient. It gives you something to concrete and active to do while in the meeting. Writing notes can also help you remember important points.

 

2.  Tape-record the meeting. I can get very anxious when meeting with a psychiatrist and thus a lot of information passes by me. I have tape-recorded meetings so that I can listen to them afterwards and pick up on the information I may have missed. I have always asked permission before recording. Although some psychiatrists don't feel totally comfortable with the idea (they fear lawsuits), all have agreed to it when I explain why I am taping the meeting.

 

3.  Announce your agenda at the beginning of the meeting. If you have done your meeting preparation work, then you know what you want to get out of the meeting with your psychiatrist. There have been many times when I bring two copies of a one-page, written statement of my agenda, concerns, and observations to the meeting. I hand a copy to the psychiatrist and begin the meeting by reading my statement out loud. My experience has been that most psychiatrists initially object to my starting this way. They are accustomed to starting meetings with their own agenda, which is usually vague and centered on the notion that they will observe me for significant clinical signs and symptoms while I answer the questions. But if I insist on beginning the meeting with my statement and assure them they can talk later, I find they soon come to understand the value of my preparation. In fact, some of the psychiatrists I work with keep the copy of my agenda and statement and add it to the clinical record. For a sample copy of an opening statement, contact the National Empowerment Center.

 

4.  Bring a friend or advocate. Many people bring a friend or support person when they see a dentist or have a physical exam. It makes sense to bring a friend to a meeting with a psychiatrist, especially when you are first breaking out of the role of passive patient and are learning to reclaim your power.

 

These strategies have worked for me. Together these strategies have helped shift the balance of power between me and the psychiatrist I am working with. Perhaps some of these strategies will make sense to you. I am sure that you will come up with your own strategies as well. What is important is to realize that you can take your power back and become the director of your own recovery and healing.

 

If you would like a free information packet with a guide to meeting preparation, organizing your own medication/self-help trial, and a sample meeting agenda statement, just call our toll free number (1-800-POWER2U) or email your address to: orders5@power2u.org and we'll be glad to send you one.