As the Patient Advocate at the Erie County Medical Center (ECMC), I serve patients on each of the five units on the two psychiatric floors. Each zone accommodates an average of 18 patients.

My main responsibility is to run groups for patients which are voluntary. When I introduce self-help groups, I tell the patients who I am and what I do. I am a peer to them. I have been a recipient of mental health services myself. I do not work for the hospital and I do not report to staff there. I am employed by the Mental Health PEER Connection (MHPC) through the Western New York Independent Living Project, Inc. I tell patients about the free consumer services at the MHPC. I also explain that the employees of MHPC have a variety of psychiatric diagnoses themselves. We have "been there" and are recovering from our mental illnesses. We want to help others to do the same.

The hospital staff is not required to be in attendance at these groups, but are certainly welcome as participants. In my groups, patients can talk about anything. I ask them, "How are you doing? What’s going on?" We have a question and answer session. I am able to give them specific information on their diagnosis, medications, and so forth, if they request it. Common topics are the hospital environment and how to get discharged as soon as possible. Outside concerns revolve around relationships, family, and their acceptance of their mental illness and treatment. I tell the patients that "You must accept responsibility for your life. You must understand that you are responsible for doing what you need to do to get better. It is not entirely what the doctor or the therapist does. Learn what works for you. Then do it." Beyond treatment and medication, people find that exercise, playing with animals, aromatherapy - anything that works for the individual - can help them recover.

In the self-help groups I lead, I distribute folders to patients. Included in these information packets are lists of self-help groups and social clubs in the area, copies of Mental Health World and the Mental Health Association’s Today paper, information on the Wellness Center at the Buffalo Psychiatric Center, a flyer on journal keeping, etc. Many patients have been unaware of the variety of (free) services in Erie County.

I also lead more focused groups on anger management, medication management, nutrition, humor, and stress reduction. I show patients ways to accomplish these goals. For example, we discuss how to track taking your medications by using a calendar or pill boxes. We discuss the dangers of alcohol and drug use in many of these groups. I tell them that "If you abuse alcohol or drugs, your medication doesn’t work and you end up back in the hospital."

If an individual wants to talk with me after groups, I will stay or come back later. I walk around from zone to zone, checking on people, answering questions. I get frequent referrals for people who need information. I work with patients who are in danger of being put into seclusion, not necessarily without merit. I talk with them. Certain staff members call me to assist in averting patient restraint and/or seclusion.

There are some issues that come up again and again when I talk to patients. One of the big issues is staff respect for patients. Not all patients complain, but those who do report they must protect themselves and sometimes other patients who have disputes with certain staff members who work here. This creates friction. As long as you’re docile, follow the rules, and behave the way the staff believes you should, there’s no problem. But the minute you show some strengths in defending yourself or another patient who’s unable to defend himself, you’re no longer a "model patient." It’s a hard fact: you’re often brought down (restrained) and secluded. Patients have reported that one female patient was put into seclusion when it really wasn’t appropriate. If somebody had talked to her or, even better, left her alone, she would have been fine. Some staff members have aggravated her by saying "Stop this, don’t do this, don’t do that" and the next thing you know she escalates and ends up in seclusion. I tried to address this issue by talking with this young girl and the rest of the group about it. It becomes clear that talking to staff at certain times is not going to work, particularly not while things are going on. It is never a good idea to act out, but especially not during medication times, meal times, or during shift changes. If I can go to a staff meeting or to a zone when many of the patients are at recreational or occupational therapy groups, then I can comment and question the staff in nicer, more palatable ways.

Another issue is staff treatment of patients. Some act as if they don’t believe that mental illness interferes with a person’s ability to behave in a way people "should" behave. Others do not believe in things like multiple personalities and cannot understand flashbacks. They may find it difficult to deal with a patient with night terrors or flashbacks. Some staff is only too ready to use seclusion as a response to someone who is very anxious, angry or crying and unable to stop. They tell them to stop. You can’t just stop it; it doesn’t work that way. On one occasion, I met a woman patient who was crying hysterically. I asked what was going on. She wasn’t able to stop crying. A nurse tried to calm her down, but it wasn’t working. She needed to cry and they wanted her to stop. They left me with her and I let her cry until she was cried out. You know that’s going to happen. It’s got to. When she was cried out, then she talked for a bit. Then she was okay. One of the nurses and I talked about it. She said, "What did you do?" "I let her cry." "That’s not good." "Well, if you’re sad and you need or want to cry, don’t you just cry?" All I did was let her cry. This particular nurse took that in and put it to use. That’s a success.

Another common concern of patients is that their doctors will tell them, "You’ll be out of here soon, next week." They may even give them a date. When next week comes, the day comes and goes. Patients complain about this. You can’t blame them. Why do the doctors say, "You’re going to be out of here by then" when they don’t know? That’s the reality: they don’t know. It seems like they’re afraid to say to the patient they don’t know. One doctor is here all the time. You can usually reach her no matter what’s going on. So I went to this particular doctor and asked her, "Why do you do this?" She said, "It’s to give them some hope." "What you’re doing is dashing their hopes if they’re not out of here at the time you said. It would make more sense to me to say ‘Well, we’re going to try this medication and we’re going to do this, and if all goes well it could be ten days. However, we’re going to have to play it by ear.’" She wasn’t sure if that would work, but she said she would give it a try. Honesty seems to work better with the patients than promoting false hope. This is a great example of patients’ questions and complaints having an effect. This doctor wasn’t aware of this particular concern. She thought she was doing something good by saying "Oh yeah, well, next week" only to find that it wasn’t so good. She found out it was better to be straightforward with the patients.

When patients complain about what the doctors are doing, it’s usually the staff that gets the complaints. Often, the doctors aren’t aware of these issues, especially since they spend such a short period of time on the ward. They don’t have the time to address these concerns. As a Patient Advocate, I can relay these concerns to the doctors. In this way, patient recommendations spark small changes that can have a profound effect on the staff and the way the zone is run.

The staff’s duties on these zones can be very intense and stressful. The locked-door environment can be oppressive. There is some wonderful staff. Sometimes one staff member can make it better for everybody. There are sensitive, caring people with strong personalities. When on duty, the rest of the staff behaves the way they behave. With one gentle, kind, patient person around, things go smoothly because she’s able to set an example for the others.

One of the interesting aspects of my job is that I am a consumer but I am working on the psychiatric ward. This poses a slight dilemma for some staff. They choose to see me as a professional, which is fine with me. I have a BA in Psychology, I am a Certified Alcohol and Substance Abuse Counselor (CASAC), and I have extensive training and counseling experience in trauma issues. I will "take their ball and run with it" because it works. Since I also choose to identify as a consumer, they can become confused. They just can’t seem to mix the two. All this time they have been more comfortable with me as a professional, but I can often get a point across through this crossover. I walk the line between advocating for patients as a peer and operating as a provider. It was very difficult when I first started.

I’m much more comfortable because I now know staff with whom I can discuss just about anything. So the line is wider for me now than it was when I first started. At first, it was very confusing to figure out which side I needed to lean toward. I discovered it doesn’t make much difference. I generally get along with most of the staff. I don’t think I’ve ever had anybody be outright nasty to me. Some of them are very, very accepting of the fact that I’m a consumer and have said that they want copies of the Today newspaper or ask "Do you know where I could go for this" or "What could I do here?" I’ve had staff come to some of the presentations that I do, the more directed groups and say things like "I take medication." I think that’s wonderful because I think it’s helpful for patients in the sense that it gives them a reality. Some of the staff here could easily tip over and be on the other side of the key. Having that awareness makes those staff easy to work with. It is difficult with the staff that could easily fall over and won’t admit that’s the case. But again, the line is very fine. Basically, they know who I am and where I’m coming from. So they give me a lot of leeway. Also there was a big push from the administration to make this work so they gave me a lot of freedom in developing my job and this worked out really well.

I work with patients and talk about when I was a patient myself at one time. "Now here I am." They think, "Maybe I could do this . . . " This seems to give some of them hope. They can see the possibilities that they could make it themselves some day. That’s the best thing about my job as a Peer Advocate.

I welcome your questions or comments at (716) 898-6335. If you would like more information about the Mental Health PEER Connection and their free services for consumers, please call (716) 836-0822.