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
a PATIENT.
* 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
responsibilities.
* 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
many visitors.
* 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
be released.