Bill of Rights for Periodic Paralysis Patients

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:

~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 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

~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.

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 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 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~

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 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 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”~

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 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 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~

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 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 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 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~

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 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

http://www.chronicpainpartners.com/attention-doctors-an-eds-patients-bill-of-rights/

http://www.nlm.nih.gov/medlineplus/patientrights.html

http://www.healthsourceglobal.com/docs/Patient%20Bill%20of%20Rights_merged.pdf

http://www.nm.org/location/northwestern-memorial-hospital/hospital-guide-nmh/patients-visitors-patient-stay-and-care-nmh/patient-bill-of-rights-and-responsibilities-nmh

http://www.who.int/genomics/public/patientrights/en/