Posts
Folks: We've scheduled our annual NAMI Schenectady fund raiser chicken barbeque dinner for Friday, August 19 at Central Park Pavilion. Festivities start at 4 pm with continuous music from disc jockey Vic Furnari. Dinners served by Center Stage Deli starting at 5 pm. Grilled half-chicken dinners served buffet style with side salads, roll and butter, dessert, coffee and iced tea. There's a Chinese auction with tables out full of gift items for people to take tickets and bid on. Prizes for the best karaoke singers and for the worst ones. 50-50 raffle included. We're counting on families and friends together with many others in the community to come out and make this a success.
Tickets were mailed out to many people in mid-July. If you didn't get a ticket you can call Flora Ramonowski on 372-6771 or Mary or Roy Neville on 377-2619. You can't buy tickets at the door unless you have called one of us first and ordered one or more dinners at least three days ahead of the event. Tickets are $20; consumers of mental health services are charged $10. We hope to see you there on the 19th.
Wednesday, August 3, 2011
Friday, April 29, 2011
NAMI lunch meeting Monday October 10 at Center Stage Deli
hear ye! hear ye!
NAMI Schenectady holds its monthly lunch meeting Monday, October 10 at noon at Center Stage Deli, 2678 Hamburg St., Rotterdam. Speaker is Darin Samaha, director of the Schenectady County Office of Community Services. Darin will tell us about the local effects of the changes in delivery of mental health services directed by NYS Dept of Health and Office of Mental Health. We've learned there are three providers of services vying to be the operator of a health home in this area and beyond. RSS, Inc. is one, Ellis Hospital in combination with Hometown Health and Visiting Nurse Service is another and Fidelis Care, Inc. is the third. One or more will be chosen by NYS Health Dept to run a network of agencies and organizations as case managers and care coordinators. They will focus on monitoring high cost users of medical and mental health care in hospitals and nursing homes to find ways to hold costs down.
We arrive before noon at the deli, have tables reserved for us at the rear of the restaurant and start the meeting shortly after 12. We order individually off the menu--no need to reserve with us. Center Stage Deli is about two miles south of its juncture with Altamont Avenue at its northern end. From intersection of State St and Brandywine Avenue, go south on Brandywine three blocks to Duane Avenue on your left, turn east on Duane and proceed around bend and over bridge to stop light. That is where Hamburg joins Altamont Avenue. Take left fork at the light onto Hamburg and drive at least two miles south to restaurant. It is on the right, just after U-Haul truck rental place and in small block of stores near the road, with sign in front.
Pls read of other events in our October E-News newsletter to be sent by e-mail about Oct.1. It lists dates and times for weekly relatives support groups and the DBSA consumer support group as well as events happening this month. Find back copies of the E-News on our website, namischenectady.org. See you there. Roy Neville 377-2619
NAMI Schenectady holds its monthly lunch meeting Monday, October 10 at noon at Center Stage Deli, 2678 Hamburg St., Rotterdam. Speaker is Darin Samaha, director of the Schenectady County Office of Community Services. Darin will tell us about the local effects of the changes in delivery of mental health services directed by NYS Dept of Health and Office of Mental Health. We've learned there are three providers of services vying to be the operator of a health home in this area and beyond. RSS, Inc. is one, Ellis Hospital in combination with Hometown Health and Visiting Nurse Service is another and Fidelis Care, Inc. is the third. One or more will be chosen by NYS Health Dept to run a network of agencies and organizations as case managers and care coordinators. They will focus on monitoring high cost users of medical and mental health care in hospitals and nursing homes to find ways to hold costs down.
We arrive before noon at the deli, have tables reserved for us at the rear of the restaurant and start the meeting shortly after 12. We order individually off the menu--no need to reserve with us. Center Stage Deli is about two miles south of its juncture with Altamont Avenue at its northern end. From intersection of State St and Brandywine Avenue, go south on Brandywine three blocks to Duane Avenue on your left, turn east on Duane and proceed around bend and over bridge to stop light. That is where Hamburg joins Altamont Avenue. Take left fork at the light onto Hamburg and drive at least two miles south to restaurant. It is on the right, just after U-Haul truck rental place and in small block of stores near the road, with sign in front.
Pls read of other events in our October E-News newsletter to be sent by e-mail about Oct.1. It lists dates and times for weekly relatives support groups and the DBSA consumer support group as well as events happening this month. Find back copies of the E-News on our website, namischenectady.org. See you there. Roy Neville 377-2619
Monday, April 11, 2011
Swimming with the sharks or What I did on vacation
I was out in the Gulf off Florida's Sanibel Island in late March swimming in six feet of water parallel to the beach. I go about a quarter mile up the beach and then turn around and swim back, leisurely, just enjoying the pleasure of it. I'm almost always the only one in the water who swims out this far and stays out for any length of time. I overcome the resistance of waves lapping, the bumps in the water as I paddle along in broad, even strokes. The minutes pass. Nothing disturbs me. There is no sound out here. The children and the grownups I see on the beach as I slowly pass them are silent from here even though it is noisy where they are. Their chairs and beach umbrellas and swimsuits dot the shore with bright colors.
Now I swim with my face underwater and see only yellow--the color when water has a white sandy bottom. When I look toward the shore the water is gray-green and when I look the other way farther out facing toward Mexico it turns dark blue. The line of the dark blue meets the middle blue of the sky at the horizon. I float on my back and look up the sky and the sky infinitely absorbs the color blue. I can stare into the blazing sun, too, which makes me see a blob of orange. It is dreamy and delightful. The sea buoys up my body, now motionless. I roll to one side and take in the whole scene on the beach, pleased that I am the only one here and they can look out and see me daring to be out alone--the old guy with the bald head. I cruise along swimming slowly, my arms moving effortlessly, my breath coming easily and I regard all those on the beach as off in another world.
The days are perfect for a swim--85 degrees and water temperature 72. It is so peaceful. I am aware, however, of the slightest feeling of dread. That spooky feeling that everything could be smashed in a split second. There are sharks around. They roam close to shore in the warm waters surrounding Florida. They are all predators but the small ones that the anglers pull in out of the surf and less aggressive species like hammerheads aren't going to bother me. Just the big guys. You eat sharks—they serve fried shark balls at one of the restaurants, even though they're garbage eaters and carry germs. My father served us shark steaks that he caught with an ordinary line off the pier at Clearwater Beach in 1937.
Over on the Atlantic side you do hear of encounters. It isn't fun because these marauders are sheer power and evil. They have rows of big, sharp teeth like you see on Discovery Channel when they extract one from the sea and open its jaws. No way to escape those jagged tines. The thing is, sharks are dumb or don't see well because they sometimes bump into a swimmer with an immense whack and miss getting a good bite. That's the story I keep in mind, how a teenage girl on her board off Lantana Beach on the Atlantic side was smashed into but the shark missed making a kill. She told the newspaper it felt like getting hit with a truck. And he drove her down in the water to drown her. I'm in only a few feet of water so that doesn't scare me but the idea of being bowled over while I'm innocently watching the girls on the beach, does.
I believe sharks have a miserable time trying to catch anything at all. They don't want a human, that's not their main food. The story is that the surfers lie on their boards waiting for a good wave and the poor shark mistakes the shape of the board for a dolphin, his favorite meal. So I'm careful not to lie motionless on my back too long or dangle a leg that might look like a meal to a shark. I keep moving a little.
Would I know how to fight back if one of these monsters attacked? I learned from Discovery Channel you punch them on the snout in a sensitive place just above the upper lip. Or was that an alligator? They release their grip, although your arm or leg may be inside their jaws by then. Those rows of teeth—BIG, pointy and razor sharp, are going to take a chunk out of you. And you know what that means? You bleed profusely in the water and that immediately attracts all the sharks from South Beach to Acupulco, because they smartly pick up the scent.
So the gambit is not to flop in the water and fight tooth and nail, so to speak, or try to wrestle with a leathery skinned beast far bigger than you and uglier, who loves chomping pieces of flesh off other animals. That's what he does for a living. You run for it—you swim like you never swam before, straight for shore, like you're Michael Phelps racing for the wall in the 100 meters in the Olympics. You yell for help —they will point to you but they won't come. Would you head out from shore to make a second meal for some leviathan? Anyway, you don't stop till you reach beach because the shark has had a taste of you and he's just following the trail of blood now, with a few of his brothers, licking at your toes.
They will lay you flat on the sand while the blood oozes out and the waves lap at your feet. The bystanders will ooh and aah at your gaping punctures. Your wife can't look. The children are told to draw away. When the EMC's come they gently shift you onto a gurney and carry you through the crowd to their vehicle. You wake up to find yourself in a whitewashed hospital room, attended by sweet young nurses. They coo and hover over you while you put aside the pain and tell them how you fought off the biggest of the big sharks. The photographer snaps your picture with the gash in full color. And you'll take a copy of the newspaper back home to show your buddies up north what bravery is really all about. (Roy Neville)
Now I swim with my face underwater and see only yellow--the color when water has a white sandy bottom. When I look toward the shore the water is gray-green and when I look the other way farther out facing toward Mexico it turns dark blue. The line of the dark blue meets the middle blue of the sky at the horizon. I float on my back and look up the sky and the sky infinitely absorbs the color blue. I can stare into the blazing sun, too, which makes me see a blob of orange. It is dreamy and delightful. The sea buoys up my body, now motionless. I roll to one side and take in the whole scene on the beach, pleased that I am the only one here and they can look out and see me daring to be out alone--the old guy with the bald head. I cruise along swimming slowly, my arms moving effortlessly, my breath coming easily and I regard all those on the beach as off in another world.
The days are perfect for a swim--85 degrees and water temperature 72. It is so peaceful. I am aware, however, of the slightest feeling of dread. That spooky feeling that everything could be smashed in a split second. There are sharks around. They roam close to shore in the warm waters surrounding Florida. They are all predators but the small ones that the anglers pull in out of the surf and less aggressive species like hammerheads aren't going to bother me. Just the big guys. You eat sharks—they serve fried shark balls at one of the restaurants, even though they're garbage eaters and carry germs. My father served us shark steaks that he caught with an ordinary line off the pier at Clearwater Beach in 1937.
Over on the Atlantic side you do hear of encounters. It isn't fun because these marauders are sheer power and evil. They have rows of big, sharp teeth like you see on Discovery Channel when they extract one from the sea and open its jaws. No way to escape those jagged tines. The thing is, sharks are dumb or don't see well because they sometimes bump into a swimmer with an immense whack and miss getting a good bite. That's the story I keep in mind, how a teenage girl on her board off Lantana Beach on the Atlantic side was smashed into but the shark missed making a kill. She told the newspaper it felt like getting hit with a truck. And he drove her down in the water to drown her. I'm in only a few feet of water so that doesn't scare me but the idea of being bowled over while I'm innocently watching the girls on the beach, does.
I believe sharks have a miserable time trying to catch anything at all. They don't want a human, that's not their main food. The story is that the surfers lie on their boards waiting for a good wave and the poor shark mistakes the shape of the board for a dolphin, his favorite meal. So I'm careful not to lie motionless on my back too long or dangle a leg that might look like a meal to a shark. I keep moving a little.
Would I know how to fight back if one of these monsters attacked? I learned from Discovery Channel you punch them on the snout in a sensitive place just above the upper lip. Or was that an alligator? They release their grip, although your arm or leg may be inside their jaws by then. Those rows of teeth—BIG, pointy and razor sharp, are going to take a chunk out of you. And you know what that means? You bleed profusely in the water and that immediately attracts all the sharks from South Beach to Acupulco, because they smartly pick up the scent.
So the gambit is not to flop in the water and fight tooth and nail, so to speak, or try to wrestle with a leathery skinned beast far bigger than you and uglier, who loves chomping pieces of flesh off other animals. That's what he does for a living. You run for it—you swim like you never swam before, straight for shore, like you're Michael Phelps racing for the wall in the 100 meters in the Olympics. You yell for help —they will point to you but they won't come. Would you head out from shore to make a second meal for some leviathan? Anyway, you don't stop till you reach beach because the shark has had a taste of you and he's just following the trail of blood now, with a few of his brothers, licking at your toes.
They will lay you flat on the sand while the blood oozes out and the waves lap at your feet. The bystanders will ooh and aah at your gaping punctures. Your wife can't look. The children are told to draw away. When the EMC's come they gently shift you onto a gurney and carry you through the crowd to their vehicle. You wake up to find yourself in a whitewashed hospital room, attended by sweet young nurses. They coo and hover over you while you put aside the pain and tell them how you fought off the biggest of the big sharks. The photographer snaps your picture with the gash in full color. And you'll take a copy of the newspaper back home to show your buddies up north what bravery is really all about. (Roy Neville)
Sunday, April 10, 2011
The doctor as God and how to talk to one
(from A Letter To Patients With Chronic Disease, July 21, 2010 by Dr. Rob in Better Health Network)
This is from a piece in Better Health, a bloggers network on the internet. Dr. Rob opens by confessing he's just an ordinary guy who happens to be a doctor and he's really afraid of chronic patients because they know their illness better than he does. With someone seriously mentally ill, he's aware he can't do much more than practice pharmacy. He's up on that but knows its limitations. So we have this strange apology from Dr. Rob to his chronic patients: “You have it very hard. After spending 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I, too, can’t understand what your lives are like. “How do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body?
Dr. Rob says he can’t imagine. He says “You scare doctors. I am talking about your understanding of a fact that we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand. But chronic, unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.”
OK, Dr Rob: Where is this going?
“So when you approach a doctor,” he continues, “especially one you’ve never met before--you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? Let me give you advice on dealing with doctors:”
“Don’t come on too strong--yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.
“Show respect--I say this one carefully, because there are certainly some doctors who don’t treat patients with respect, especially ones like you with chronic disease. These doctors should be avoided.
“Keep your eggs in only a few baskets--find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients.
“Use the ER only when absolutely needed--Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job.
“Don’t avoid doctors--one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. .
“Don't mess with the wrong people--you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship.”
My comment: the trouble with this is that there are patients arrogant enough to try to bamboozle the doctor into prescribing medicine they want in the amounts they want, rather than listen to the doctor. If doctors are this insecure they're missing something in the relationship. He's underestimating the role he plays in society as God. In our culture we bow down to doctors. Only if they reek of malpractice--poor prescribing, misdiagnosis and the like, do we complain and move on. People with serious mental illness have indeed had it hard with doctors, not because of what he says but because doctors don't trust the patient to accurately describe symptoms and history. And the docs don't have an awful lot to go on.
So how do you talk to your doctor? Just to take one example. Let's say you're overweight. Or you're switching from one drug to another because the drug you're taking isn't working. There's a great book that talks about this, by Peter J. Weiden, MD et al, called “Breakthroughs in Antipsychotic Medications--A Guide for Consumers, Families and Clinicians” (1999). Weiden says people get nervous talking to their doctor about medication. “The doctor is the expert and they don't feel comfortable raising the question of switching medications.”
He suggests a respectful approach that also lets you in on the decision. You might say, “I'm having a lot of side effects on the medication I'm taking now. Do you think I might have less trouble with one of the new atypical antipsychotics?”or “I've been taking this medication for six months and I'm still having a lot of symptoms. I'm wondering if it might be time to try a different medicine. What do you think?”
Weiden affirms, writing over 10 years ago, that “it's important for you and your doctor to reach a decision together. Be sure to give your doctor all the information you can about what is going on with your illness and your life at the moment. If your doctor says it's not the right time for you to switch medications, be sure you understand why.”
Let's say you and your family have already met with your doctor and decided that it's time to change your medication. “Make the switch,” he says, rather than hesitate. “It's impossible to know ahead of time exactly how your body and brain will react to going off your old medication and starting the new one.” You'll be taking the new medicine while staying on the old in what is called a cross-over. He goes on to talk about the effect of the change on your side effect medicines, how to avoid relapse, and deal with a temporary increase in symptoms. “Sometimes switching medicine is like doing road work,” he says. “When the highway department starts repairing a road, things usually get worse before they get better.” The doctor has good sense. His way of dealing with his patients has a lot more going for it than the hustlers who sell a message today that recovering patients should tell the doctor what is best. That won't work for long. Doctors are changing, too, we believe. They no longer act like God, or shouldn't. (Roy Neville)
This is from a piece in Better Health, a bloggers network on the internet. Dr. Rob opens by confessing he's just an ordinary guy who happens to be a doctor and he's really afraid of chronic patients because they know their illness better than he does. With someone seriously mentally ill, he's aware he can't do much more than practice pharmacy. He's up on that but knows its limitations. So we have this strange apology from Dr. Rob to his chronic patients: “You have it very hard. After spending 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I, too, can’t understand what your lives are like. “How do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body?
Dr. Rob says he can’t imagine. He says “You scare doctors. I am talking about your understanding of a fact that we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand. But chronic, unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.”
OK, Dr Rob: Where is this going?
“So when you approach a doctor,” he continues, “especially one you’ve never met before--you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? Let me give you advice on dealing with doctors:”
“Don’t come on too strong--yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.
“Show respect--I say this one carefully, because there are certainly some doctors who don’t treat patients with respect, especially ones like you with chronic disease. These doctors should be avoided.
“Keep your eggs in only a few baskets--find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients.
“Use the ER only when absolutely needed--Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job.
“Don’t avoid doctors--one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. .
“Don't mess with the wrong people--you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship.”
My comment: the trouble with this is that there are patients arrogant enough to try to bamboozle the doctor into prescribing medicine they want in the amounts they want, rather than listen to the doctor. If doctors are this insecure they're missing something in the relationship. He's underestimating the role he plays in society as God. In our culture we bow down to doctors. Only if they reek of malpractice--poor prescribing, misdiagnosis and the like, do we complain and move on. People with serious mental illness have indeed had it hard with doctors, not because of what he says but because doctors don't trust the patient to accurately describe symptoms and history. And the docs don't have an awful lot to go on.
So how do you talk to your doctor? Just to take one example. Let's say you're overweight. Or you're switching from one drug to another because the drug you're taking isn't working. There's a great book that talks about this, by Peter J. Weiden, MD et al, called “Breakthroughs in Antipsychotic Medications--A Guide for Consumers, Families and Clinicians” (1999). Weiden says people get nervous talking to their doctor about medication. “The doctor is the expert and they don't feel comfortable raising the question of switching medications.”
He suggests a respectful approach that also lets you in on the decision. You might say, “I'm having a lot of side effects on the medication I'm taking now. Do you think I might have less trouble with one of the new atypical antipsychotics?”or “I've been taking this medication for six months and I'm still having a lot of symptoms. I'm wondering if it might be time to try a different medicine. What do you think?”
Weiden affirms, writing over 10 years ago, that “it's important for you and your doctor to reach a decision together. Be sure to give your doctor all the information you can about what is going on with your illness and your life at the moment. If your doctor says it's not the right time for you to switch medications, be sure you understand why.”
Let's say you and your family have already met with your doctor and decided that it's time to change your medication. “Make the switch,” he says, rather than hesitate. “It's impossible to know ahead of time exactly how your body and brain will react to going off your old medication and starting the new one.” You'll be taking the new medicine while staying on the old in what is called a cross-over. He goes on to talk about the effect of the change on your side effect medicines, how to avoid relapse, and deal with a temporary increase in symptoms. “Sometimes switching medicine is like doing road work,” he says. “When the highway department starts repairing a road, things usually get worse before they get better.” The doctor has good sense. His way of dealing with his patients has a lot more going for it than the hustlers who sell a message today that recovering patients should tell the doctor what is best. That won't work for long. Doctors are changing, too, we believe. They no longer act like God, or shouldn't. (Roy Neville)
Friday, November 5, 2010
”New era” electronic health records not so promising--Part 1
We should take a good look at these schemes the state and federal governments have for embellishing the already gargantuan systems of electronic medical records that you see in use in hospitals, clinics and doctor's offices. The State of New York is making a big pitch for a big “new era network”, a multi-million dollar program of advanced electronic medical records which supposedly would let one doctor pull up the medical records of another doctor's patient and work on him right off, easy as pie. It would open your medical records and mine to the eyes of others and would needlessly keep on file every detail of our medical history for posterity. That's the substance of a story in the Albany Times-Union October 27.
I think this is mindless record keeping. We can't afford it. The jobs this would create won't go to ordinary working people. The promoters haven't worked the kinks out of the privacy issues at all. Nobody wants their hospital records open to others. The promoters claim the promise of more information flowing to doctors and care centers is “like a public utility—a sort of highway system for medical information.”
“Better information helps doctors do a better job” said the executive director of NY eHealth Collaborative which went in on the proposal with the NYS Department of Health. It's a $129 million plan to the federal government to create the country's largest network for medical records. Now I ask you: Do we need this?
Sharing medical records doesn't happen now and it may not happen soon, despite the shrill publicity.
Here's why. In the patient wards inside Ellis Hospital you see the nurses clicking on their computer consoles, morning, noon and night. They keep up to the minute information on the patients in their care. Endless facts and trivia go into the entries on the screen, I was told, like whether the bed rails were up. They do their progress notes and charting. I don't think the nurses share the screens with one another. The data isn't for outside eyes. The patients can't see their own records, nor can other professionals without using access codes. That's because the system in use in the hospital is going to be different from another system used by a doctor in his office who serves patients on the unit. And the doctor's computer isn't accessible to other professionals. The whole system is built for defense, protection of patient information and protection of the hospital in this case.
That's what I was told. The hospital has the nurses tapping away for hours at their computers in the hall rather than do direct patient care because the hospital worries about lawsuits. And it wants to be sure all the little things are done. What if someone missed doing a test or procedure? We'll catch it. What if a reading is challenged? We have the data on board. Records are kept for the benefit of the hospital and possibly the insurance carrier, not for the patient or competitors or other outsiders.
This whole system seems to be designed to not give access to others. It would be foolish to keep things entirely secret, but careless to let information flow without patient approval. It doesn't seem likely a doctor will share his patient's records without an okay, and he won't be able to share without modifying the system. Of course that's what the state is proposing to achieve in the new generation computer service.
We need to keep an open mind about electronic medical records and the huge systems some people envision for the future. As I see it, the article in the Times Union amounts to public relations for the statewide Health Care (hospital) industry, the state Health Department, electronics data systems corporations and many others in the field. Why should we be interested?
These systems have serious drawbacks. They are extremely expensive. They take away from spending that is needed badly by the institutions and agencies that do direct care for people, in health and mental health. They are not needed in today's care system. No one is going to get better with the added information these systems are to contain. No one's life is going to be saved with them. As patients, we don't need them to keep track of every moment of our hospital lives with data. Most of the data to be kept is useless for future reference. They are a luxury we cant afford.
Our NAMI families should take a good look at what the new systems are doing. We want personal care, not record keeping. All the data that is needed in the ordinary course of events for a patient's care is already being gathered and it soaks up much of the time and cost of mental health care for our family members in the hospital. We should not pass along this information without being better judges of it. Of all the things that are needed for better care, this is not one of them. (Roy Neville)
I think this is mindless record keeping. We can't afford it. The jobs this would create won't go to ordinary working people. The promoters haven't worked the kinks out of the privacy issues at all. Nobody wants their hospital records open to others. The promoters claim the promise of more information flowing to doctors and care centers is “like a public utility—a sort of highway system for medical information.”
“Better information helps doctors do a better job” said the executive director of NY eHealth Collaborative which went in on the proposal with the NYS Department of Health. It's a $129 million plan to the federal government to create the country's largest network for medical records. Now I ask you: Do we need this?
Sharing medical records doesn't happen now and it may not happen soon, despite the shrill publicity.
Here's why. In the patient wards inside Ellis Hospital you see the nurses clicking on their computer consoles, morning, noon and night. They keep up to the minute information on the patients in their care. Endless facts and trivia go into the entries on the screen, I was told, like whether the bed rails were up. They do their progress notes and charting. I don't think the nurses share the screens with one another. The data isn't for outside eyes. The patients can't see their own records, nor can other professionals without using access codes. That's because the system in use in the hospital is going to be different from another system used by a doctor in his office who serves patients on the unit. And the doctor's computer isn't accessible to other professionals. The whole system is built for defense, protection of patient information and protection of the hospital in this case.
That's what I was told. The hospital has the nurses tapping away for hours at their computers in the hall rather than do direct patient care because the hospital worries about lawsuits. And it wants to be sure all the little things are done. What if someone missed doing a test or procedure? We'll catch it. What if a reading is challenged? We have the data on board. Records are kept for the benefit of the hospital and possibly the insurance carrier, not for the patient or competitors or other outsiders.
This whole system seems to be designed to not give access to others. It would be foolish to keep things entirely secret, but careless to let information flow without patient approval. It doesn't seem likely a doctor will share his patient's records without an okay, and he won't be able to share without modifying the system. Of course that's what the state is proposing to achieve in the new generation computer service.
We need to keep an open mind about electronic medical records and the huge systems some people envision for the future. As I see it, the article in the Times Union amounts to public relations for the statewide Health Care (hospital) industry, the state Health Department, electronics data systems corporations and many others in the field. Why should we be interested?
These systems have serious drawbacks. They are extremely expensive. They take away from spending that is needed badly by the institutions and agencies that do direct care for people, in health and mental health. They are not needed in today's care system. No one is going to get better with the added information these systems are to contain. No one's life is going to be saved with them. As patients, we don't need them to keep track of every moment of our hospital lives with data. Most of the data to be kept is useless for future reference. They are a luxury we cant afford.
Our NAMI families should take a good look at what the new systems are doing. We want personal care, not record keeping. All the data that is needed in the ordinary course of events for a patient's care is already being gathered and it soaks up much of the time and cost of mental health care for our family members in the hospital. We should not pass along this information without being better judges of it. Of all the things that are needed for better care, this is not one of them. (Roy Neville)
Thursday, October 21, 2010
NAMI needs to monitor programs, and it doesn't
Our local NAMI bylaws call on us to provide a mutual support, education and advocacy group for the families and friends of people with serious mental illness and to work to improve the lives of people with serious mental illness. There’s a little more to that—we’re to support research and advocate for improved treatment, housing, and other services and for the rights of persons with mental illness, as well as propose and conduct programs in the community, and raise funds.
Nowhere does it say how we are to be effective. And one way to be effective is to observe and monitor what goes on in government and the local service programs so we have an idea what we’re talking about. We’ve really dropped the ball on this, just as NAMI national doesn’t keep a line by line voting record of Congress people on issues important to us. And NAMI NYS doesn’t monitor the NYS Legislature to see that constituent wishes are followed through on.
On that score, how lawmakers vote, we lose out by never following up with them to ask how they voted on a single issue and what we might do to change their minds. It’s all fair game.
Monitoring goes hand in hand with advocacy. We have to put some teeth in our advocacy and one way is to keep tabs on what the lawmakers at state and local levels and directors of agencies do affecting mental health and Medicaid, homeless services, housing, elderly care and assistance to the poor, among key topics. Most of their money comes from the state to be distributed to the county and various agencies. But people who make up these boards and committees voice their politics over these issues and they influence the community in which we live.
It’s not easy to monitor company board meetings but we can get the information once we know what to ask for. We can interview directors of mental health and housing programs about the actions they take. We can ask the hospital’s public relations office or community relations at the health care insurance plans like MVP. We can go to public meetings like those of the county community services board and its mental health subcommittee, and we can join these boards.
But we still don’t learn much unless we know how to press for facts about their performance on the issues we raise. We haven’t been doing this, not because we’re not capable of it, but we’re lazy. And if we don’t press them we don’t keep them honest and ready to defend what they do in this arena. That goes for city, town, county and state and federal officials and lawmakers.
We do have examples how monitoring can pay dividends. Our allies on the criminal justice committee of the League of Women Voters have observed the county’s alternative treatment court (mental health court) over the years, two or three of them sitting in sessions month after month. They now have a good estimate of how the court works and what it needs.
Some other issues have to do with law enforcement and criminal justice. We’ve already formed a committee and are urging the city police department and sheriff’s office to train officers for a Crisis Intervention Team (CIT). It’s a safer way to deal with someone with disruptive behavior on the street or in the home. We want to form a criminal justice task force by inviting the police chief, district attorney, public defender and city judges to meet together with people from mental health, probation and social services. They’d deal with sentencing, the issues of alternative courts, diversion to treatment instead of jail and the other needs of people involved in the criminal justice system. That’s monitoring, too.
We need a few friends at city and county government level who we can reach out to. The county board reviews and votes on spending for mental health, Medicaid, and nursing homes, for instance, although most of it comes in the form of state aid. The City Council votes on the federal Community Development Block Grant and awards money to police and firemen rather than to needs in the low income community. Individual members on city and town boards and on their planning committees have blocked needed housing applications for the disabled population. City council has promoted the move out of the YMCA and Bethesda House from downtown. If we choose to, we can write or call these leaders or speak at council meetings. Why not hold them responsible for how they vote?
Schenectady Municipal Housing Authority is another agency that bears watching to see it applies for all the available federal HUD grant money for more affordable housing. We just need to keep after them. Ellis Hospital should get our attention, too. Its management approved plans to move Collage social club downtown before consulting consumers and families who have an interest in this program. So far, over objections, the move is going through. It’s another lesson. (Roy Neville)
Nowhere does it say how we are to be effective. And one way to be effective is to observe and monitor what goes on in government and the local service programs so we have an idea what we’re talking about. We’ve really dropped the ball on this, just as NAMI national doesn’t keep a line by line voting record of Congress people on issues important to us. And NAMI NYS doesn’t monitor the NYS Legislature to see that constituent wishes are followed through on.
On that score, how lawmakers vote, we lose out by never following up with them to ask how they voted on a single issue and what we might do to change their minds. It’s all fair game.
Monitoring goes hand in hand with advocacy. We have to put some teeth in our advocacy and one way is to keep tabs on what the lawmakers at state and local levels and directors of agencies do affecting mental health and Medicaid, homeless services, housing, elderly care and assistance to the poor, among key topics. Most of their money comes from the state to be distributed to the county and various agencies. But people who make up these boards and committees voice their politics over these issues and they influence the community in which we live.
It’s not easy to monitor company board meetings but we can get the information once we know what to ask for. We can interview directors of mental health and housing programs about the actions they take. We can ask the hospital’s public relations office or community relations at the health care insurance plans like MVP. We can go to public meetings like those of the county community services board and its mental health subcommittee, and we can join these boards.
But we still don’t learn much unless we know how to press for facts about their performance on the issues we raise. We haven’t been doing this, not because we’re not capable of it, but we’re lazy. And if we don’t press them we don’t keep them honest and ready to defend what they do in this arena. That goes for city, town, county and state and federal officials and lawmakers.
We do have examples how monitoring can pay dividends. Our allies on the criminal justice committee of the League of Women Voters have observed the county’s alternative treatment court (mental health court) over the years, two or three of them sitting in sessions month after month. They now have a good estimate of how the court works and what it needs.
Some other issues have to do with law enforcement and criminal justice. We’ve already formed a committee and are urging the city police department and sheriff’s office to train officers for a Crisis Intervention Team (CIT). It’s a safer way to deal with someone with disruptive behavior on the street or in the home. We want to form a criminal justice task force by inviting the police chief, district attorney, public defender and city judges to meet together with people from mental health, probation and social services. They’d deal with sentencing, the issues of alternative courts, diversion to treatment instead of jail and the other needs of people involved in the criminal justice system. That’s monitoring, too.
We need a few friends at city and county government level who we can reach out to. The county board reviews and votes on spending for mental health, Medicaid, and nursing homes, for instance, although most of it comes in the form of state aid. The City Council votes on the federal Community Development Block Grant and awards money to police and firemen rather than to needs in the low income community. Individual members on city and town boards and on their planning committees have blocked needed housing applications for the disabled population. City council has promoted the move out of the YMCA and Bethesda House from downtown. If we choose to, we can write or call these leaders or speak at council meetings. Why not hold them responsible for how they vote?
Schenectady Municipal Housing Authority is another agency that bears watching to see it applies for all the available federal HUD grant money for more affordable housing. We just need to keep after them. Ellis Hospital should get our attention, too. Its management approved plans to move Collage social club downtown before consulting consumers and families who have an interest in this program. So far, over objections, the move is going through. It’s another lesson. (Roy Neville)
They can't have it all, can they? Remodeling mental health services
What happens if Medicaid is cut back?
NYS Office of Mental Health (OMH) is going gangbusters creating a new image for community mental health in our county and all over the state. It's restructuring the mental health clinics (new rates for Ellis mental health clinic) and converting continuing treatment centers, social clubs and intensive case management into PROS model programs (personal recovery oriented services), among other things.
It's trying to pull together mental health and substance abuse services along with general health care in the same locality under one roof in what's called a “medical home.” This hasn't gotten too far with the mental health clinic and substance abuse programs here, but it will come. It's considered the wave of the future—like one-stop shopping.
Of course, you still need dental care and children's health services on the same campus, don't you? Ellis's health center on McClellan Street has moved part way in that direction.
The state OMH wants to move patients out of nursing homes and state hospitals like Capital District Psychiatric Center, into homes and apartments. The community housing would be run by not for profit providers like RSS and Mohawk Opportunities in our area. Those movements are underway locally with requests for proposals (RFPs) about to be issued by the counties to the housing providers to open 11 supported apartments in Schenectady and more than 20 in Albany County, from what we hear.
Aside from the apartment growth, reshaping of the mental health landscape is costly and questionable as to the merits. It's coming at a time when there isn't any more of the usual state money for expansion. The not for profit hospitals and agencies are taking in clients with high needs, some of whom do not have health insurance. Family and child counseling agencies have been tightening their belts for some time with the tough economic situation. Yet the state finds the money to spend where it wants.
The main funder, of course, is Medicaid, the cash cow that the Office of Mental Health is willing to drain as fully as imaginable. Most of its mental health aid to communities now comes from Medicaid (50-50 with the feds), not out of state revenues. Programs called Community Support Services and Reinvestment, entirely state funded, are drying up or gone. From what we gather the big providers depending on Medicaid, like Hometown Health, Ellis Hospital and Northeast Family and Child Society, are hanging on. Others, like Catholic Charities, Carver and Family and Child Service of Schenectady, if they can't charge Medicaid, may be worse off.
Closing Collage social club and converting it and Continuing Treatment to PROS will cost more than present programs but Medicaid will now pick up the bill. A clubhouse has closed in Saratoga Springs but it has not been replaced. In Albany County the state wants to consolidate mental health services--the social club, a drop in center, day services and work programs are affected.
New reimbursement rates for outpatient mental health clinics are designed to make these operations more attractive to sponsors like Ellis, while they cost more. And the state is stimulating more patient care in the home with more generous stipends to caregivers. The promoters think patients can get cheaper care at home than in a hospital but there's no proof the patients won't be back on the inside if care isn't sufficient.
Moreover, the state and federal governments are going to spend billions of dollars to convert record keeping systems in hospitals, clinics, labs and doctors offices to electronic systems. These, they say, will speed decisions about patient care and tie in all the doctors and agencies so they can better manage care. It's already upset the traditional way that nurses and social workers do their jobs and there are big questions about confidentiality of records.
The state is willing to change patterns of care in community mental health on the grounds these programs haven't worked well enough to achieve recovery of patients. There simply isn't proof, however, that their new ideas will work better for people with serious mental illness. For the most impaired it is simply a gamble.
Medicaid facing the axe
Meanwhile, cost of psychiatric care is said to be the fastest rising sector within Medicaid spending and the politicians are aware of this. As a state we have a particularly high population of patients with psychiatric illness on Medicaid. And NYS pays more per patient than other states for its Medicaid coverage.
New York's Republican governor candidate Carl Paladino says he'll take an axe to Medicaid and chop it back 40 percent. Andrew Cuomo, his Democrat opponent, also pledges to halt the hemorrhaging of Medicaid spending. We heard a similar tune in a recent debate here between Senator Hugh Farley and county legislator Susan Savage.
How can reforms in mental health care keep going if Medicaid is cut? “That's the million dollar question,” says Darin Samaha, director of the county Office of Community Services. (Roy Neville)
NYS Office of Mental Health (OMH) is going gangbusters creating a new image for community mental health in our county and all over the state. It's restructuring the mental health clinics (new rates for Ellis mental health clinic) and converting continuing treatment centers, social clubs and intensive case management into PROS model programs (personal recovery oriented services), among other things.
It's trying to pull together mental health and substance abuse services along with general health care in the same locality under one roof in what's called a “medical home.” This hasn't gotten too far with the mental health clinic and substance abuse programs here, but it will come. It's considered the wave of the future—like one-stop shopping.
Of course, you still need dental care and children's health services on the same campus, don't you? Ellis's health center on McClellan Street has moved part way in that direction.
The state OMH wants to move patients out of nursing homes and state hospitals like Capital District Psychiatric Center, into homes and apartments. The community housing would be run by not for profit providers like RSS and Mohawk Opportunities in our area. Those movements are underway locally with requests for proposals (RFPs) about to be issued by the counties to the housing providers to open 11 supported apartments in Schenectady and more than 20 in Albany County, from what we hear.
Aside from the apartment growth, reshaping of the mental health landscape is costly and questionable as to the merits. It's coming at a time when there isn't any more of the usual state money for expansion. The not for profit hospitals and agencies are taking in clients with high needs, some of whom do not have health insurance. Family and child counseling agencies have been tightening their belts for some time with the tough economic situation. Yet the state finds the money to spend where it wants.
The main funder, of course, is Medicaid, the cash cow that the Office of Mental Health is willing to drain as fully as imaginable. Most of its mental health aid to communities now comes from Medicaid (50-50 with the feds), not out of state revenues. Programs called Community Support Services and Reinvestment, entirely state funded, are drying up or gone. From what we gather the big providers depending on Medicaid, like Hometown Health, Ellis Hospital and Northeast Family and Child Society, are hanging on. Others, like Catholic Charities, Carver and Family and Child Service of Schenectady, if they can't charge Medicaid, may be worse off.
Closing Collage social club and converting it and Continuing Treatment to PROS will cost more than present programs but Medicaid will now pick up the bill. A clubhouse has closed in Saratoga Springs but it has not been replaced. In Albany County the state wants to consolidate mental health services--the social club, a drop in center, day services and work programs are affected.
New reimbursement rates for outpatient mental health clinics are designed to make these operations more attractive to sponsors like Ellis, while they cost more. And the state is stimulating more patient care in the home with more generous stipends to caregivers. The promoters think patients can get cheaper care at home than in a hospital but there's no proof the patients won't be back on the inside if care isn't sufficient.
Moreover, the state and federal governments are going to spend billions of dollars to convert record keeping systems in hospitals, clinics, labs and doctors offices to electronic systems. These, they say, will speed decisions about patient care and tie in all the doctors and agencies so they can better manage care. It's already upset the traditional way that nurses and social workers do their jobs and there are big questions about confidentiality of records.
The state is willing to change patterns of care in community mental health on the grounds these programs haven't worked well enough to achieve recovery of patients. There simply isn't proof, however, that their new ideas will work better for people with serious mental illness. For the most impaired it is simply a gamble.
Medicaid facing the axe
Meanwhile, cost of psychiatric care is said to be the fastest rising sector within Medicaid spending and the politicians are aware of this. As a state we have a particularly high population of patients with psychiatric illness on Medicaid. And NYS pays more per patient than other states for its Medicaid coverage.
New York's Republican governor candidate Carl Paladino says he'll take an axe to Medicaid and chop it back 40 percent. Andrew Cuomo, his Democrat opponent, also pledges to halt the hemorrhaging of Medicaid spending. We heard a similar tune in a recent debate here between Senator Hugh Farley and county legislator Susan Savage.
How can reforms in mental health care keep going if Medicaid is cut? “That's the million dollar question,” says Darin Samaha, director of the county Office of Community Services. (Roy Neville)
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