Porphyria Educational Services
PORPHYRIA EDUCATIONAL SERVICES BULLETIN
VOL.1 No. 16 April 18, 1999
Focus: Patient Rights
Porphyria Patient Bill of Rights
As a Porphyria Patient I have the right:
* To know which physicians, nurses and medical staff
workers are responsible for my care.
* To be able to interview them and know if they are porphyria knowledgeable.
* To talk openly with my physician.
* To know whether the physician has actually treated porphyria patients
or has just seen one or none.
* To have all previous confirmation of porphyria diagnosis accepted without
repeating all testing and medical procedures.
* To be accepted as a patient with a valid disease and receive treatment
in keeping with the diagnosis of my particular form of porphyria.
* To expect to be treated for my disease at my local medical facility
without being referred to regional or national medical facilities at
far greater medical costs, and causing undue hardship on my
family, my employer, and myself.
* To have outlined from my physician, in a language that I can understand,
the treatment ordered for me, the options available, the expected outcome
of said treatment, and any instructions required for my follow-up care.
* To know that each of the said medical personnel have received updated
and informative knowledge about the disease porphyria.
* To know that all medical personnel responsible for my health care are
fully infomred about Unsafe drugs as being contraindicated for porphyrics.
* To be allowed to administer my own home medications.
* To be informed of manufacturer of any hospital drugs and the types
of fillers and binders used therein.
* That any and all radiological materials have their ingredients
be cross checked against the Unsafe drug list.
* That any and all anesthetics have their ingredients be cross checked
against the Unsafe drug list.
* To know the reason that I am being given various tests, and the persons
who are responsible for performing such tests.
* To know the reason that I am being given a certain treament, and the
persons who are responsible for carrying out that treatment.
* To know the general nature and inherit risk of any procedure or
treatment prescribed for me.
* To change my mind about any procedure for which I have given my consent.
* To refuse to sign a consent.
* To have any and all information explained to my satisfaction.
* To refuse treatment and to be informed of the medical consequences
of this action.
* To limit those persons who visit me.
* To expect my personal privacy to be respected to the fullest extent
consistent with the care prescribed for me.
* To request a consultation with a porphyria specialist or a second
opinion from another physician who is knowledgeable in porphyria
and has actually treated porphyria patients.
* To fire or change physicians.
* To change hospitals.
* To be assigned to a room condusive for rest and Intervention Therapy
for a porphyric patient, preferably a private room.
* To be allowed to keep my door closed and my window shades closed
in order to better treat my condition.
* To be assured that strong lighting or neon or halagon lighting within
my room be avoided.
* To be allowed tub baths and physical therapy in order to better
alleviate pain and problems of porphyric neuropathy.
* To receive special dietary considerations meeting the around-the-clock
carbohydrate requirements necessary for Intervention [400-500 grams min.]
* To have proper bedrail padding for self protection in theevent of
porphyric seizure activity.
* To ask for discontinuance of housekeeping detail and the use of
any and all chemicals in my room or bathroom during the duration
of my stay.
* That my identification bracelet be placed on my bed rail rather
than my wrist.
* To examine my hospital bill and to receive an explanation of it.
* To have impartial access to medical resources of the hospital without
regard to my disease, race, color, creed, national origin,age, sex,
sexual orientation, handicap or source of payment.
* To refuse to participate in medical training programs or research projects.
* To expect that my care will be personalizaed and continuous.
* To have the right to be able to make decisions and about my own
health care and the planning of such health care.
* To be informed of hospital policies and regulations which apply to me as
* To be notified of the contact person for any Porphyria Advocacy
Representatives or local area Porphyria Support Groups.
* To express a complaint/concern regarding the quality of care I receive
and a right to a response that substantially addresses my concerns.
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PORPHYRIA PATIENT RESPONSIBILITIES
As a porphyria patients is also understand that I have responsibilities.
The care that I receive depends partially on me. I am an important
part in my own recovery and may help myself by assuming the following
* To be honest and direct about everything related to me as a patient.
* To bring with me all porphyria educational information so that I may
assist those medical workers not familiar with my disease.
* To know and follow the hospital rules and regulations.
* To cooperate with my medical providers and follow the prescribed
care as recommended and agreed upon by me and with my physician.
* To notifiy my physician or nurse if I do not understand my treatment
or expected outcome.
* To let my nurse and my family know if I feel that I am receiving too
* To accept the financial obligations associated with my care.
* To advise my physician of any concern I may have in regard to my
care or to advise the Patient Representative on the unit where I am located.
* To be considerate of the rights of other patients and hospital personnel.
* To be assist in the control of noise and the number of visitors I reeive.
* To provide the name of the contact person to whom information may