Bill of Rights for Periodic Paralysis Patients
A ‘bill of rights’ may also be
called a ‘charter of rights’ or a ‘declaration of rights.’ It is a list of ethical, social or legal
principles of entitlements or freedoms or what could be referred to as that
which is “owed” to an individual. Bills of rights exist from lists of basic
human rights worldwide to lists of a country’s or a state’s citizen’s rights. A
declaration of rights has been created for all patient’s in the United States
health system and all hospitals have a bill of rights for their patients.
Specifically, targeted groups such as stroke victims, individuals with multiple
sclerosis and cancer patients have bills of rights. Until now, however, no bill
of rights has been created for individuals with Periodic Paralysis. This is a
group of very ill people who are under-recognized; under-diagnosed,
misdiagnosed, misunderstood and mistreated by the medical professionals with
whom they must deal and depend upon for their care. It is time for a Periodic
Paralysis Patient’s Bill of Rights.
First it must be understood that there exists basic medical ethics; called a ‘code of ethics,’ which is a set of moral principles. Physicians around the world follow these guidelines found in the Hippocratic oath. They take this sworn pledge before they begin to practice medicine. The following are the principles typically included:
First it must be understood that there exists basic medical ethics; called a ‘code of ethics,’ which is a set of moral principles. Physicians around the world follow these guidelines found in the Hippocratic oath. They take this sworn pledge before they begin to practice medicine. The following are the principles typically included:
~A doctor must have the best interest of the patient
~A doctor’s treatment must be based on equality and fairness
~A doctor must “do no harm”
~A doctor’s treatment may be accepted or refused by the patient
~A doctor must “do no harm”
~A doctor’s treatment may be accepted or refused by the patient
~A doctor must treat patients with dignity
~A doctor must be honest and truthful
National Patient’s Bills of Rights
In 1998 the US Advisory Commission on Consumer Protection and Quality in the Health Care Industry created and adopted what is known as the Patient’s Bill of Rights, a summary of principles. There are three major goals:
~To assist patients to feel more confidence in
the United States health care system
~To stress a strong association and connection between health care providers and their patients
~To stress the importance for patients to stay healthy
Individuals are entitled to eight major components in the National Patient’s Bills of Rights related to insurance plans and hospitals (including emergency care):
A patient is entitled to:
~Accurate and easy-to-understand information about one’s health plan, medical professionals and facilities for health care
~To stress a strong association and connection between health care providers and their patients
~To stress the importance for patients to stay healthy
Individuals are entitled to eight major components in the National Patient’s Bills of Rights related to insurance plans and hospitals (including emergency care):
A patient is entitled to:
~Accurate and easy-to-understand information about one’s health plan, medical professionals and facilities for health care
~Choice of the best health care provider for a particular
medical condition
~Access to services for emergencies
~Being a member of the team for making all individual health
care choices
~Respect and considerate treatment, with a lack of
discrimination, from all healthcare workers
~Privacy and confidentiality and the right to copy and read
all medical records and to change anything that is incorrect or not relevant
and to add to records which are not complete
~Complain and make appeals about any medical care provider,
regarding waiting time, actions or non-actions and adequacy of services or
facilities
The above goals and components have been adopted and are used by Medicare, Medicaid, hospitals, insurance companies, long-term medical facilities and more. They are the basis for targeted medical groups bills of rights also.
Using these principles of basic entitlement combined with the needs of individuals with Periodic Paralysis, the following bill of rights has been created.
The above goals and components have been adopted and are used by Medicare, Medicaid, hospitals, insurance companies, long-term medical facilities and more. They are the basis for targeted medical groups bills of rights also.
Using these principles of basic entitlement combined with the needs of individuals with Periodic Paralysis, the following bill of rights has been created.
Bill of Rights for Periodic Paralysis Patients
Created by Periodic Paralysis Network Inc
Copyright
© 2015
A
Bill of Rights for Periodic Paralysis Patients
The General Rights
The right to be the team leader of one’s own medical
care, needs and decisions ~
The right to be treated with respect and dignity by all medical professionals~
The right for the symptoms of muscle weakness and/or paralysis and any other pertinent issues to be taken seriously~
The right to be treated with respect and dignity by all medical professionals~
The right for the symptoms of muscle weakness and/or paralysis and any other pertinent issues to be taken seriously~
The right to be treated as anyone else is treated who
has a chronic, disabling medical condition~
The right for medical professionals to understand that Periodic Paralysis is a mineral metabolic disorder (channelopathy), not a neurological or muscle disease and should not be treated as such~
The right for all medical professionals to understand that Periodic Paralysis is like no other medical condition and needs to be treated like no other medical condition~
The right for all medical professionals to understand that Periodic Paralysis exists in several forms and may present with low potassium, high potassium or potassium within normal levels~
The right for medical professionals to understand that Periodic Paralysis is a mineral metabolic disorder (channelopathy), not a neurological or muscle disease and should not be treated as such~
The right for all medical professionals to understand that Periodic Paralysis is like no other medical condition and needs to be treated like no other medical condition~
The right for all medical professionals to understand that Periodic Paralysis exists in several forms and may present with low potassium, high potassium or potassium within normal levels~
The right for all medical professionals to be educated
about all aspects of Periodic Paralysis including all forms, the symptoms for
each and the treatment for each~
The right for Social Security Disability to recognize Periodic Paralysis as a chronic, disabling condition~
The right for Social Security Disability to recognize Periodic Paralysis as a chronic, disabling condition~
Diagnosis of Periodic Paralysis
The right to a timely diagnosis~
The right to a clinical diagnosis based on symptoms as in every other disease and medical condition~
The right for Whole Genome DNA Testing to be paid for by insurance~
The right for doctors to understand that only about 50% of Periodic Paralysis genetic mutations have been discovered, so a negative DNA test result does rule out Periodic Paralysis~
The right for any type of doctor to diagnose Periodic Paralysis~
The right to a clinical diagnosis based on symptoms as in every other disease and medical condition~
The right for Whole Genome DNA Testing to be paid for by insurance~
The right for doctors to understand that only about 50% of Periodic Paralysis genetic mutations have been discovered, so a negative DNA test result does rule out Periodic Paralysis~
The right for any type of doctor to diagnose Periodic Paralysis~
The right to refuse provocative testing for diagnosing
Periodic Paralysis~
The right for a doctor to believe a diagnosis of Periodic Paralysis~
The right to maintain a diagnosis for Periodic Paralysis once it has been given, no doctor has a right to change or dismiss a diagnosis~
The right for a doctor to believe a diagnosis of Periodic Paralysis~
The right to maintain a diagnosis for Periodic Paralysis once it has been given, no doctor has a right to change or dismiss a diagnosis~
The right for doctors to understand that other medical conditions may co-exist with Periodic Paralysis~
The right for doctors to understand that potassium may
not shift out of normal ranges during paralytic episodes or other symptoms~
The right to not be diagnosed with a mental or somatic disorder because a doctor does not understand or believe in Periodic Paralysis~
The right to not be diagnosed with Periodic Paralysis because it is considered “too rare”~
The right to not be diagnosed with a mental or somatic disorder because a doctor does not understand or believe in Periodic Paralysis~
The right to not be diagnosed with Periodic Paralysis because it is considered “too rare”~
Treatment in The Laboratory
The right to be treated with respect and dignity by
lab technicians~
The right to have blood drawn with no tourniquets~
The right to have blood drawn with no tourniquets~
The right to have blood drawn as quickly as possible,
even if it means going out to the car to draw the blood or to a patient’s home~
The right to know the potassium level as quickly as possible using an ISTAT or potassium reader~
The right to know the potassium level as quickly as possible using an ISTAT or potassium reader~
The right for staff to understand that normal potassium levels do not rule out Periodic Paralysis~
Treatment by Doctors and Medical Professionals
The right to be treated with respect and dignity by
doctors and all medical professionals~
The right for the symptoms of muscle weakness and/or paralysis and other pertinent issues to be taken seriously by the doctors~
The right for the symptoms of muscle weakness and/or paralysis and other pertinent issues to be thoroughly assessed and treated promptly as needed~
The right to dismiss a doctor for inappropriate care, lack of knowledge of Periodic Paralysis and poor attitude~
The right to refuse any and all drugs prescribed by a doctor; to include IV’s and anesthesia~
The right for clear, concise and truthful medical notes and records to be written by the doctors and other medical professionals~
The right to read and receive copies of all medical records and the right to challenge, add to and to change their content if not accurate~
The right to complain and make appeals about any doctor or medical care provider, regarding waiting time, actions or non-actions and adequacy of services~
The right to be referred to a doctor who understands Periodic Paralysis~
The right for the symptoms of muscle weakness and/or paralysis and other pertinent issues to be taken seriously by the doctors~
The right for the symptoms of muscle weakness and/or paralysis and other pertinent issues to be thoroughly assessed and treated promptly as needed~
The right to dismiss a doctor for inappropriate care, lack of knowledge of Periodic Paralysis and poor attitude~
The right to refuse any and all drugs prescribed by a doctor; to include IV’s and anesthesia~
The right for clear, concise and truthful medical notes and records to be written by the doctors and other medical professionals~
The right to read and receive copies of all medical records and the right to challenge, add to and to change their content if not accurate~
The right to complain and make appeals about any doctor or medical care provider, regarding waiting time, actions or non-actions and adequacy of services~
The right to be referred to a doctor who understands Periodic Paralysis~
Treatment in the ER and Hospital
The right to be treated with respect and dignity by
doctors and medical professionals~
The right to be seen quickly~
The right to be comfortable and safe~
The right to be accompanied and observed constantly by medical staff when in a paralytic episode~
The right for the doctors and medical professionals to listen to the patient (if possible), family members or caregivers on instruction for care~
The right to be seen quickly~
The right to be comfortable and safe~
The right to be accompanied and observed constantly by medical staff when in a paralytic episode~
The right for the doctors and medical professionals to listen to the patient (if possible), family members or caregivers on instruction for care~
The right for the doctors and medical professionals to read information provided by the patient, family members or caregivers on how to care for the patient~
The right for all doctors and medical professionals to
follow the specific instructions provided, to include proper positioning, no
IV’s, no drugs and more, as necessary~
The right to have blood drawn with no tourniquets for
potassium levels which may indicate potassium levels that may be low, high or
within normal ranges~
The right to have blood drawn as quickly as possible
preferably using a potassium reader or ISTAT for instant results which may
indicate potassium levels that may be low, high or within normal ranges~
The right for the symptoms of muscle weakness and/or
paralysis, and other pertinent issues to be thoroughly assessed~
The right for the symptoms of muscle weakness and/or paralysis and others as pertinent, to be taken seriously by the doctors and medical care professionals~
The right to be observed for choking, heart arrhythmia, fluctuations in blood pressure, and heart rate, breathing issues, low oxygen levels and others as pertinent~
The right for the symptoms of muscle weakness and/or paralysis and others as pertinent, to be taken seriously by the doctors and medical care professionals~
The right to be observed for choking, heart arrhythmia, fluctuations in blood pressure, and heart rate, breathing issues, low oxygen levels and others as pertinent~
The right to not be harmed during paralysis by doctors
or other medical professionals attempting to prove “faking” by pinching,
scratching, burning or sticking with pins or needles~
The right to be treated for choking, heart arrhythmia, fluctuations in blood pressure, and heart rate, breathing issues, low oxygen levels as pertinent~
The right to refuse IV’s, drugs, medications and anesthesia, which may be harmful or deadly~
The right to refuse provocative testing for the reason
of diagnosing Periodic Paralysis~
The right to call in a hospitalist, or other specialists who may know about Periodic Paralysis as needed~
The right to call in a hospitalist, or other specialists who may know about Periodic Paralysis as needed~
The right to call in a social worker or patient
advocate as needed~
The right to dismiss a doctor or other medical professional for inappropriate care, lack of knowledge of Periodic Paralysis and poor attitude~
The right for clear, concise and truthful medical notes and records to be written by the doctors and other medical professionals~
The right to read and receive copies of all medical records and the right to challenge, add to and to change their content if not accurate~
The right to complain and make appeals about any doctor or medical care provider, regarding waiting time, actions or non-actions and adequacy of service~
The right to dismiss a doctor or other medical professional for inappropriate care, lack of knowledge of Periodic Paralysis and poor attitude~
The right for clear, concise and truthful medical notes and records to be written by the doctors and other medical professionals~
The right to read and receive copies of all medical records and the right to challenge, add to and to change their content if not accurate~
The right to complain and make appeals about any doctor or medical care provider, regarding waiting time, actions or non-actions and adequacy of service~
Research and Awareness
The right to increase the awareness of Periodic
Paralysis among populations, doctors and governments~
The right to “put a face” to Periodic Paralysis as in other known diseases and medical conditions~
The right for all medical professionals to be educated about all aspects of Periodic Paralysis including all forms, the symptoms for each and the appropriate treatment for each~
The right to “put a face” to Periodic Paralysis as in other known diseases and medical conditions~
The right for all medical professionals to be educated about all aspects of Periodic Paralysis including all forms, the symptoms for each and the appropriate treatment for each~
The right to funding for research of all aspects of
Periodic Paralysis including but not limited to diagnosis and treatment~
Insurance
The right for all forms of Periodic Paralysis to be recognized as disabling conditions by insurance companies~
The right for potassium readers to be deemed as medical devices and paid for by insurance companies~
The right to have ISTAT devices for monitoring vitals for all Periodic Paralysis patients and to have them paid for by insurance companies~
The right for the special natural and organic diet and supplementation that must be followed by patients with Periodic Paralysis to be paid for in part by insurance companies~
Created by Periodic Paralysis
Network Inc
Copyright © 2015
Edited September 16, 2015
https://en.wikipedia.org/wiki/Medical_ethics
https://en.wikipedia.org/wiki/Medical_ethics
