Tuesday, May 26, 2009

What mental health consumers want for inpatient services

It's boring and it's not private while in the hospital

I came to listen to what the consumers had to say. They were gathered at the big tables in the open room at the Collage psycho-social club on a Thursday afternoon waiting for supper.
Holly Clark, who manages the clubhouse for Ellis Hospital, had their attention. She wanted to see what they thought about the inpatient psychiatric unit at the hospital. That's where you go when you're sick, and while many of the folks who attend Collage have had a turn in the hospital for a crisis with their illness or a panicky time or depressed time, they don't generally talk about it. There's a powerful stigma at work that keeps anyone's medical and mental health history unspoken, off limits—even to friends and family.
This wasn't to get at anyone's personal history. It was about the things that everyone knows go on when you're hospitalized but you don't have a chance to talk about them while you're there. Holly began by asking if they would have some ideas for improvements there.
Eager to talk, they began suggesting how their stays might have been more pleasant or rewarding. There seemed to be three themes: they wanted more groups and activities on the unit that would keep them involved; the right to go off the unit to neighboring Sunnyview where there is a gym and swim pool; and more privacy—for small group discussions and family visits, for instance.
About the groups, “We need weekend activity..they don't have enough on weekends to do,” a man offered. Like what? “Dancing, karaoke...hobbies—arts and crafts.” Someone said they have an arts and crafts room but it's not open weekends.
What else would you like to do? Holly asks. “I'd like to play Trivial Pursuit...and Boggle.”... “I'd like to do beads”.... “We could make jewelry.” Holly says: “Oh, that's a good idea.”
Do you have books and magazines? “Yes.” What about writing—like poetry? “Yes, they give you paper and crayons.” Could you make scrapbooks? “They don't allow scissors.” Can you use a camera? “No. You can't take pictures of anybody on the inpatient unit.”
“We could do quilting, suncatchers...'journalong'--another hospital did that,” they began saying. Do you have TV.? “There's just one TV in the dining room. We don't have TV in our own rooms.” They agreed on more TVs.
How about a radio—can you listen to music? “No radios,” they replied, “they're not allowed.” How about headphones so you don't disturb anybody? “No,they won't allow those either—it's the wires.” And no tapes. Apparently the hospital considers the magnetic tape inside cassettes a safety risk.
But, Holly persisted, “If the headphones are wireless, self-contained? And they are one-piece that go over your head?” That idea sounded safe enough even if no one's using them on the unit.
Then came suggestions about exercise and freer movement. “What we need is a gym, a place to exercise. We'd like to use the gym at Sunnyview. They have a pool—why can't we swim there and play volleyball?” (wide agreement). Evidently, other patients at Ellis have had such privileges. Holly thought they could look into it. And someone sensibly suggested: “We'd need bathing suits.”
The gym at the Capital District Psychiatric Center was mentioned as a big attraction for patients there. CDPC also has a workshop where patients can put in time and earn some money by doing mostly routine assembly jobs the hospital takes in under contract.
When they were asked about working, they replied: “We can do jobs. We could help pass out menus or wrap the silverware for the kitchen.” Such chores are needed every day in the hospital. “Why not?” they asked. No one had a ready answer. It just wasn't in the cards.
Another suggestion was: “We need to get fresh air, to go out. Why can't they let us go out on the grounds? At another hospital they let us do that,” a man said. While some agreed, others were hesitant, doubtful they would be allowed out on their own.
They brought up the idea of more privacy and small group spaces. “They need to let you smoke cigarettes, so we have a place to talk,” a woman remarks. (ready applause-- but they know Ellis has rules against smoking inside or outside the hospital.) “I used to enjoy that so much—talking to each other in the small room they had. Why can't we still have a small room?” she persisted. She and others said they'd like to have the room, where it's private, even without smoking. (As an option, the hospital will give them cigarette gum.)
“We need more privacy for family visits. You need a room where you can talk, apart from your neighbor,” someone noted. (There is just one visitor room per floor in psychiatry?)
“Patients need to have a pay phone.” (there is only one per floor for patients). “We can't use a cell phone. People don't get messages.” Several others agreed.
“I don't like them taking my valuables,” a woman said. “They put them in a safe. They might not be there when you leave.” “No,” said another. “They put your valuables in a locker with your clothes. That's all right.”
A member said patients should be notified ahead when they're going to be discharged. “They don't tell you anything.” (it drew approval.)
Along the way there were remarks about the food. “The food doesn't have enough variety,” they contended. (It's evidently the same food as in the rest of the hospital but they said they don't have as much choice. Patients in Psych fill out a slip and an aide picks it up each morning for the day's meal choices. Other patients, like those on medical-surgical floors, choose meal selections from a larger menu and phone them in. On Psych they said they do get a snack in the evening—including a sandwich and ice cream. During the day they aren't served coffee, just juice.)
Part way through this chatty session, Holly is handed a note. She opened it and turns to a fellow: “This comes anonymously. Are you sure you want me to read it?” When he nods, she reads the note. “Okay, it says: 'I'd like to have nude nurses and a sponge massage.'” A lot of cheers followed. It was one of the moments that broke up the crowd. (Roy Neville)

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