Update about Justina Pelletier
Как говорится, To Whom It May Concern,
но в первую очередь уважаемым френдам green_eegs, signamax и whocares1970 , с которыми мы обсуждали, что происходит с этой девочкой
Поскольку в главных новостях про нее ничего не было, я погуглил, и нашел две важные новости, одна про нее, одна около,
1) про нее
оказывается, ей опять плохо (что, к сожалению неудивительно) и с конца сентября она опять в больнице, точнее, больницах - сперве в Йейле, теперь в Филадельфии
A difficult return to hospital for Justina Pelletier
Justina Pelletier ... has been rehospitalized this fall with what her parents describe as acute gastrointestinal distress.
Lou Pelletier said his 16-year-old daughter began suffering symptoms that prompted her admission to Yale-New Haven Children’s Hospital, in late September. He said testing and treatment there failed to address her ailments.
On Monday, her parents had Justina transferred to the Children’s Hospital of Philadelphia for additional tests. Her father said Justina, who ate robustly when she returned home six months ago, has been fed intravenously in recent weeks. It is unclear when Justina ... might return home from the Philadelphia hospital.
Lou Pelletier said he was pleased that staff at Yale-New Haven focused on physical causes and testing, as opposed to the position of the Boston Children’s team that Justina’s ongoing problems, including gastrointestinal distress and trouble walking, were largely psychiatric in origin. Clinicians at Boston Children’s accused the parents of medically negligent behavior in February 2013, and the state quickly moved in to take custody of Justina.
“It’s 100 percent medical,” said Pelletier; he and his wife, Linda, remain furious at Boston Children’s and the state’s child-protection agency for accusing them of medical child abuse. “There’s no psychological cause. Never has been and never is.”
...
Lou Pelletier said he and his wife had a very positive relationship with clinicians at Yale-New Haven, and the only reason for her transfer after about two months there was that the hospital in Philadelphia knows more about the disorders affecting their daughter.
...
Dr. Mark Korson, a specialist on mitochondrial disorder who had treated Justina at Tufts Medical Center, said the medical staff at Yale-New Haven had been giving him periodic updates on her case and asking for input. ... Boston Children’s had been criticized for failing to involve Korson early on, despite his efforts to be included and his role in sending her there so she could be seen by her former Tufts gastroenterologist, who had moved to Children’s.
Korson, who received permission from Justina’s family to discuss her case with the Globe, said the Yale-New Haven medical staff told him they had done testing that indicated the teen’s lower colon was not working properly.
2) а теперь вторая новость, не менее важная
Tufts shutters mitochondrial clinic
сорри за большие цитаты, но они важны в свете того, что мы обсуждали, поэтому приведу все, что мне было интересно (bold мой):
Tufts Medical Center, whose chief of metabolism was involved in a highly contentious dispute with Boston Children’s Hospital staff over the diagnosis and treatment of a Connecticut teenager, Justina Pelletier, has shuttered its metabolism clinic, eliminating the position of its chief, Dr. Mark Korson, and sending more than 500 of his patients scrambling to find new care.
The hospital said that it had decided to reorganize its genetics and metabolism division in the pediatrics department to focus on genetics exclusively, and dropped Korson’s job as of Nov. 1. Many patients, who were given only about a month to find a new doctor in a field where providers are already in short supply, were sharply critical of the hospital’s surprise decision.
More than 150 of Korson’s patients, who saw him for treatment of assorted metabolic disorders, such as PKU and Gaucher disease, were given a list of eight facilities in New England, including Boston Children’s, where they might find new care. But the options are far more limited for the roughly 400 patients who saw Korson for mitochondrial disease, a group of genetic metabolic disorders that affect how cells produce energy. They were given the names of two advocacy groups that might provide help in finding physicians with expertise in the specialty who would accept new patients.
Korson’s mitochondrial patients were local and from distant states, and now some local patients are having to travel to Pennsylvania and Ohio for care.
“To find a doctor with a deep understanding of mitochondrial issues, who can coordinate care effectively, and who has a good bedside manner is a dream come true,” said Charles Mohan, executive director of a nonprofit advocacy group, United Mitochondrial Disease Foundation. He said his office fielded calls from more than 100 panicked Tufts patients following the hospital’s decision. “Mark Korson was a dream come true for a lot of these patients.”
Tufts declined to explain its reasoning for the reorganization, other than a brief statement saying it had followed a “thorough review.” Although Korson also declined to comment on the decision, he said financial pressures are a reality for metabolic programs across the country. “Most of them lose money because they are low-volume, high-intensity clinics, with low financial reimbursement” from insurers, he said.
.......
Korson arrived at Tufts in 2000, after having spent a decade directing the metabolism service at Boston Children’s.
He is now involved in a new for-profit venture, the Institute for Metabolic Education, that will offer online training and consulting services for physicians who want to learn more about metabolic disorders.
------------------------------------------------------
два вопроса к Молли и Максу - правильно ли я понимаю, что Тафт "прикрыл лавочку" и выгнал с волчьим билетом доктора Корсона?
(что, наверное, и надо было сделать, если я правильно понял Молю)
и второе, связанное, опять же если я правильно понимаю, отправить больных без "continuity of care" это очень серьезное дело, и если не криминал, то может быть причиной иска по malpractice, т.е. госпиталь должен быть достаточно твердо уверен,
что либо никакой митохондреальной болезни у них нет, либо Корсон их не лечил, а "держал за ручку и показывал хорошие манеры",
чтобы такое сделать,
особенно с учетом контраста: 400-м мито-пациентам дали "the names of two advocacy groups that might provide help in finding physicians",
тогда как 150 другим дали "list of eight facilities in New England, including Boston Children’s, where they might find new care"
Заранее спасибо!
но в первую очередь уважаемым френдам green_eegs, signamax и whocares1970 , с которыми мы обсуждали, что происходит с этой девочкой
Поскольку в главных новостях про нее ничего не было, я погуглил, и нашел две важные новости, одна про нее, одна около,
1) про нее
оказывается, ей опять плохо (что, к сожалению неудивительно) и с конца сентября она опять в больнице, точнее, больницах - сперве в Йейле, теперь в Филадельфии
A difficult return to hospital for Justina Pelletier
Justina Pelletier ... has been rehospitalized this fall with what her parents describe as acute gastrointestinal distress.
Lou Pelletier said his 16-year-old daughter began suffering symptoms that prompted her admission to Yale-New Haven Children’s Hospital, in late September. He said testing and treatment there failed to address her ailments.
On Monday, her parents had Justina transferred to the Children’s Hospital of Philadelphia for additional tests. Her father said Justina, who ate robustly when she returned home six months ago, has been fed intravenously in recent weeks. It is unclear when Justina ... might return home from the Philadelphia hospital.
Lou Pelletier said he was pleased that staff at Yale-New Haven focused on physical causes and testing, as opposed to the position of the Boston Children’s team that Justina’s ongoing problems, including gastrointestinal distress and trouble walking, were largely psychiatric in origin. Clinicians at Boston Children’s accused the parents of medically negligent behavior in February 2013, and the state quickly moved in to take custody of Justina.
“It’s 100 percent medical,” said Pelletier; he and his wife, Linda, remain furious at Boston Children’s and the state’s child-protection agency for accusing them of medical child abuse. “There’s no psychological cause. Never has been and never is.”
...
Lou Pelletier said he and his wife had a very positive relationship with clinicians at Yale-New Haven, and the only reason for her transfer after about two months there was that the hospital in Philadelphia knows more about the disorders affecting their daughter.
...
Dr. Mark Korson, a specialist on mitochondrial disorder who had treated Justina at Tufts Medical Center, said the medical staff at Yale-New Haven had been giving him periodic updates on her case and asking for input. ... Boston Children’s had been criticized for failing to involve Korson early on, despite his efforts to be included and his role in sending her there so she could be seen by her former Tufts gastroenterologist, who had moved to Children’s.
Korson, who received permission from Justina’s family to discuss her case with the Globe, said the Yale-New Haven medical staff told him they had done testing that indicated the teen’s lower colon was not working properly.
2) а теперь вторая новость, не менее важная
Tufts shutters mitochondrial clinic
сорри за большие цитаты, но они важны в свете того, что мы обсуждали, поэтому приведу все, что мне было интересно (bold мой):
Tufts Medical Center, whose chief of metabolism was involved in a highly contentious dispute with Boston Children’s Hospital staff over the diagnosis and treatment of a Connecticut teenager, Justina Pelletier, has shuttered its metabolism clinic, eliminating the position of its chief, Dr. Mark Korson, and sending more than 500 of his patients scrambling to find new care.
The hospital said that it had decided to reorganize its genetics and metabolism division in the pediatrics department to focus on genetics exclusively, and dropped Korson’s job as of Nov. 1. Many patients, who were given only about a month to find a new doctor in a field where providers are already in short supply, were sharply critical of the hospital’s surprise decision.
More than 150 of Korson’s patients, who saw him for treatment of assorted metabolic disorders, such as PKU and Gaucher disease, were given a list of eight facilities in New England, including Boston Children’s, where they might find new care. But the options are far more limited for the roughly 400 patients who saw Korson for mitochondrial disease, a group of genetic metabolic disorders that affect how cells produce energy. They were given the names of two advocacy groups that might provide help in finding physicians with expertise in the specialty who would accept new patients.
Korson’s mitochondrial patients were local and from distant states, and now some local patients are having to travel to Pennsylvania and Ohio for care.
“To find a doctor with a deep understanding of mitochondrial issues, who can coordinate care effectively, and who has a good bedside manner is a dream come true,” said Charles Mohan, executive director of a nonprofit advocacy group, United Mitochondrial Disease Foundation. He said his office fielded calls from more than 100 panicked Tufts patients following the hospital’s decision. “Mark Korson was a dream come true for a lot of these patients.”
Tufts declined to explain its reasoning for the reorganization, other than a brief statement saying it had followed a “thorough review.” Although Korson also declined to comment on the decision, he said financial pressures are a reality for metabolic programs across the country. “Most of them lose money because they are low-volume, high-intensity clinics, with low financial reimbursement” from insurers, he said.
.......
Korson arrived at Tufts in 2000, after having spent a decade directing the metabolism service at Boston Children’s.
He is now involved in a new for-profit venture, the Institute for Metabolic Education, that will offer online training and consulting services for physicians who want to learn more about metabolic disorders.
------------------------------------------------------
два вопроса к Молли и Максу - правильно ли я понимаю, что Тафт "прикрыл лавочку" и выгнал с волчьим билетом доктора Корсона?
(что, наверное, и надо было сделать, если я правильно понял Молю)
и второе, связанное, опять же если я правильно понимаю, отправить больных без "continuity of care" это очень серьезное дело, и если не криминал, то может быть причиной иска по malpractice, т.е. госпиталь должен быть достаточно твердо уверен,
что либо никакой митохондреальной болезни у них нет, либо Корсон их не лечил, а "держал за ручку и показывал хорошие манеры",
чтобы такое сделать,
особенно с учетом контраста: 400-м мито-пациентам дали "the names of two advocacy groups that might provide help in finding physicians",
тогда как 150 другим дали "list of eight facilities in New England, including Boston Children’s, where they might find new care"
Заранее спасибо!