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)

Monday, May 25, 2009

Commissioner fiddles while Rome burns

How state Office of Mental Health falls down on its responsibilities

Government has to ask now and then if it is the problem, not the solution. And if it is the problem, how about getting out of the way so that other people can get on with their lives
State government leaders in mental health are talking so piously about making reforms they don't look at the obvious—that their own policies make for some of the problems that exist that cost taxpayers millions of dollars and cause hardship for consumers of mental health services and their families.
Imagine fighting a health care system that is so fragmented that you can't get what you need to recover from a serious medical illness. That's a number one concern for many families with schizophrenia
As National NAMI reports: More than 2 million Americans and their families face these conditions every day because of an illness called schizophrenia. It's an illness that is twice as common as HIV/AIDS. It does not discriminate. It strikes people of all races and both genders, and cuts across all social and economic classes.
We've been saying that for more than 20 years, pointing to the state legislature and Office of Mental Health for remedies. Do they have remedies?
Imagine being homeless, or having a son or daughter who went missing and has not been heard from in years. There are so many wanderers among the mentally ill population. And families can't find them because of a vicious system the state and national governments use to stifle any talk about a mentally ill patient's condition or whereabouts without his or her consent.
We've objected strenuously to that, too but haven't gotten anywhere. Known as patient confidentiality laws, both state and federal, these keep families in the dark about their loved one's hospital stay or place of residence, for example. They keep treating professionals from easily sharing information, and finally, perpetuate stigma against the mentally ill by silencing and threatening anyone who discloses.
The institutional review boards were set up to bird-dog similar surveillance over what people say or write about the mentally ill in research projects. Every college and university research paper for publication undergoes this review in our state as do papers from researchers in government mental health facilities, hospitals and private laboratories and centers. The reviewers will delay and block publication if there is any suspicion that the subjects can be identified. The result is to freeze any serious research on behaviors of mentally ill people in different contexts like prisons or nursing homes, for example. This is another area where the state needs to adjust policies.
While the commissioner flirts with tracking systems and computer improvements, his policies affecting community mental health are questionable. He has written that continuing treatment programs must be cut back while the state boosts payments to co-existing mental health clinics. This would remove a vital part of the treatment system in our community.
Also, the state has announced it has changed the role of the state mental hospitals to make them into short term and intermediate care facilities. This eliminates their traditional duty to take patients from the psych units of general and private hospitals for extended stays before returning them to the community. The change makes it harder for discharge coordinators in Ellis Psychiatry to place patients now that the state is balking on taking patients as formerly. Are these sensible practices?
The commissioner is emphasizing rehabilitation, independent living and self-directed treatment as ingredients in a new model of care. His “transformation” philosophy is liberating to some. But we shouldn't turn away from pressing needs of the most seriously mentally ill who cause the greatest impact on society when they are not treated, I believe.
He seems to say as much in an article he and his medical director, Lloyd Sederer, have written in Health Affairs (Vol. 28, No. 3, 2009), titled Mental Health Crises and Public Policy. They say the state is responsible for mental health policy, while the states have to develop strong local government systems of mental health care to be effective. Referring to crises, like the shootings in NYC last year, or the woman who died in the waiting room of a Brooklyn hospital, or the Karen Webdale case back in 1999, they say those in charge try piecemeal fixes, none of which prevent more of these events from happening again. They call for “clinical alerts” in NYC and improved clinical standards to follow up on high risk patients, as “touch up” changes proposed by a NYC task force.
But many more decisions not being made should haunt our state leaders. What about protective services for families where violence occurs? How about “housing first” programs that take people off the street as they're trying to do in NYC? How about more halfway houses for men with mental illness who have just been released from prison, so they won't immediately be returned? What about tackling the difficult question of whether it should be state policy to lock up mentally ill people who prove they can't live safely in society?
The state can do much more on a variety of fronts.
--Over the years we can't recollect a single case of the Office of Mental Health tapping the NYS Dormitory Authority for funds to build apartment projects. Other NYS departments have gone this route, leading to housing projects for mentally retarded people, the elderly and college students, among others.
--Assertive Community Treatment teams are underfunded in the state mental health budget which causes them to be less effective. Schenectady County originally had to put up its own funds for its first ACT teams.
--the state fails to open more crisis stabilization homes for the mentally ill, which are medically staffed group homes that take more fragile patients than those admitted to other licensed group homes. As a result many people are admitted and readmitted for short term stays in the hospital at high expense when they could be supervised appropriately in a crisis residence.
--the state office has not promoted the employment of mentally ill people by state agencies under section 55b and 55c of the state Labor Law. These jobs used to be a reliable source of employment for them.
--There is excessive record keeping and report writing in annual state recertification and Medicaid reviews that are extremely costly and time wasting for hospital and clinic personnel in psychiatry. Staff have to write progress reports in longhand in psychiatry to please recertification teams. Workers spend more time doing reports than treating patients, it is alleged. Computers would speed up the reporting.
--Similarly, the group home and apartment programs run by not for profit corporations under contract with the state office also contend with heavy record keeping, particularly to account for medicines doled out. Daily treatment reports filed for Medicaid reimbursement are paid only after considerable lag time and are often kicked back to the agency if not filled out properly.
And what about the homeless in the streets, the repeaters in the emergency rooms and psychiatric wards, and the people with restless voices clamoring in their heads. Shouldn't this commissioner put first priority on them? One of the programs the legislature approved to address these issues is Kendra's Law, or assisted outpatient treatment. It has saved the state money and recaptured lives. And it serves as a model for other state mental health systems. But the commissioner is ambivalent about this, citing a report saying since the law was passed, crimes continue to occur and the effectiveness of AOT is still being evaluated. Give us a break! (Roy Neville)