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IN THIS ISSUE
* Our Right to Pain Relief
* In the News
* On the Site
* Feedback
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Our Right to Pain Relief, by Shar Phoenix
For those of us with Lupus, the relief of pain can
be a very complicated process since Lupus is in itself an extraordinarily
complex disease and it is so often accompanied by syndromes such
as Raynaud's, Fibromyalgia, Scleroderma, Sjogren's and/or others.
Finding the correct diagnosis can be a long and arduous journey.
Often, by the time many of us have arrived at that point, our illness
has progressed to the point of severe chronic pain. Achieving satisfactory
relief of our pain can be as difficult and exacting a process as
was finding diagnosis.
As of January 1st, 2001, hospitals, all nursing homes,
in/out clinics, doctors' offices and pain treatment centers across
America have been admonished and instructed to fully alleviate patient
pain, according to the patient's own assessment of pain. Signs and
posters explaining our right to pain relief are required to be prominently
posted in all medical facilities.
While this applies thus far only in the United States,
it stands as a model for all countries and this standard can be
useful to those with chronic pain, all around the globe. Whatever
the practice in a particular country, if we act as self-advocates
for patient rights and proper treatment of pain, we can raise the
standard to a higher level worldwide.
Younger children and those who cannot otherwise express
their needs must be offered pictures from which they can identify
the level of their pain, the rest of us can select a number from
1 to 10. If we are not offered adequate pain relief options, we
can reasonably refuse further treatment until our needs are properly
met. We have the right to choose another physician and/or clinic
in order to recieve the care we merit. When our rights are abused,
we can file official complaints with the medical review boards.
If the filing of such complaints adversely affects delivery of our
medical services, that negligence would be also addressed by official
complaint.
Chronic pain is the reality of daily life for a great many people
and many of us are undermedicated or not recieving medication at
all. Under or untreated chronic pain hinders healing, debilitates
the body's resources, further stresses the auto-immune system, affects
the heart, causes depression, sleep disturbances and reduces, sometimes
to a crippling degree, a person's ability to function in daily life.
When these factors are overlooked or misunderstood, people with
chronic pain are sent the message that they are somehow "responsible"
for their symptoms and "overreacting" to their pain, thereby creating
in them a fear of character weakness and sense of shame. Because
of this, many of those suffering with chronic pain habitually underestimate
and under-report the level and types of their symptoms while struggling
to lead productive lives.
We have been taught to fear pain relief more than pain ~ that's
a fallacy. This attitude goes back to the 1920's, when the U.S.
government's war on drugs began in earnest, soon spreading and affecting
the world view. But numerous studies have proven that morphine and
it's derivatives, which are the most powerfull of all pain relieving
medications, are not addictive when prescribed for chronic and/or
severe medical or terminal conditions. When administered according
to actual need, the body is released from pain to focus on healthier
function and survival. The body, once relieved of it's overwhelning
pain, is then better able to fight infection and balance immune
system function.
The American Pain Foundation is an independent, nonprofit information,
education and advocacy organization serving people with pain. They
have a patients' self advocacy and education website with a posted
"Pain Care Bill of Rights" at http://www.painfoundation.org/
The "Pain Care Bill of Rights" is as follows:
As a Person with Pain, You Have:
The right to have your report of pain taken seriously and to be
treated with dignity and respect by doctors, nurses, pharmacists
and other healthcare professionals.
The right to have your pain thoroughly assessed and promptly treated.
The right to be informed by your doctor about what may be causing
your pain, possible treatments and the benefits, risks and costs
of each.
The right to participate actively in decisions about how to manage
your pain.
The right to have your pain reassessed regularly and your treatment
adjusted if your pain has not been eased
The right to be referred to a pain specialist if your pain persists.
The right to get clear and prompt answers to your questions, take
time to make decisions, and refuse a particular type of treatment
if you choose.
Regardless of nationality, these are basic rights inherent to us
all and when we act as our own advocates in pursuing them, we can
greatly improve the quality of our medical care. Taking charge of
our own lives by exercising our medical rights is a positive, forthright
stance that can permeate every aspect of our lives and invigorate
our spirits. Wellness is more than a physical condition; it is the
balanced condition of well-being in mind and body. Lupus may be
a part of our lives but it needn't overwhelm and control our entire
being. Once we take steps to liberate ourselves from pain, we begin
to free ourselves to live life more fully.
The Lupus Foundation of America has a Government Advocacy page
where American citizens can advocate for quality medical care by
urging Congress to pass a strong Patients' Rights Bill. http://capwiz.com/lfa/home/
If Lupus organizations throughout the world create similar pages
for advocacy to their political systems and their citizens get involved,
dynamic worldwide changes in patients' rights may well become a
reality. It's our responsibility to make it so; we are the ones
with the most to lose or the most to gain.
This information is provided for your thoughtful consideration,
so that you may expand your options and become empowered to lead
healthier, more fulfilling lives.
Researched, written and copyrighted by Shar Phoenix
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IN THE NEWS
Genelabs Technologies, Inc and Watson Pharmaceuticals, Inc. reported
that the U.S. Food and Drug Administration's (FDA) Arthritis Advisory
Committee met today to review Aslera™ (prasterone) for the treatment
of patients with mild to moderate systemic lupus erythematosus (SLE
or lupus). The committee was not asked by the FDA to vote on whether
to recommend approval of Aslera™ for the treatment of SLE. The FDA
seeks expert advice from advisory committees as part of its review
of a New Drug Application (NDA). However, the final decision regarding
the approval of an NDA is made by the FDA. More…http://www.uklupus.co.uk/news71.html
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ON THE SITE
* You can now send electronic greeting cards from the Lupus Site,
categories include birthday, get well, hello, and thank you. More
cards will be added soon. http://www.uklupus.co.uk/card.html
* The Lupus Site is pleased to feature an exclusive interview with
Dr Daniel Wallace, author of 'The Lupus Book'. Read the interview
at - http://www.uklupus.co.uk/dwallace.html
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All articles in Butterfly News are copyright Joanne
Forshaw, and must not be reprinted in any way, shape or form without
written permission. "Our Right to Pain Relief" is copyright Shar
Phoenix. No responsibility can be taken for anything that happens
as a result of any advice/information contained herein.
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