Rare Disease Support » access http://rarediseasesupport.org Building community and providing support for children, families and friends impacted by rare pediatric diseases Mon, 21 Jun 2010 12:09:16 +0000 en hourly 1 power, culture and health care quality http://rarediseasesupport.org/2010/02/25/power-culture-and-health-care-quality/ http://rarediseasesupport.org/2010/02/25/power-culture-and-health-care-quality/#comments Thu, 25 Feb 2010 19:13:49 +0000 Nora Murphy http://rarediseasesupport.org/?p=404 I am white and educated.  I have certain privilege that come along with these attributes.   But I also made below the poverty line last year, my children are on Medicaid and I’m a single mom.  These are attribute that put me squarely in the “have- not” category in the  world of privilege and power transactions.   I think about this a lot in [...]]]> I am white and educated.  I have certain privilege that come along with these attributes.   But I also made below the poverty line last year, my children are on Medicaid and I’m a single mom.  These are attribute that put me squarely in the “have- not” category in the  world of privilege and power transactions.   I think about this a lot in health care.  Every ’strike’ against you makes it that much harder for you to get your child the best care.  And when your child has a rare disease, a fight is a given.  There is no easy path.  Anything that makes the fight harder, anything that put barriers in your way, is not only unfortunate but there can be dire consequences.

I just read a passage that resonated with me and I want to share it with you.  It’s written by an anthropologist who learns about health care issues from the perspectives of families by talking to them, accompanying them to doctors’ visits and videotaping interactions.  She had this to say:

Not surprisingly, a key issue for families concerns
whether or not they can trust their clinicians. The most
minute nuances and gestures of health professionals (esp.
doctors) are routinely scrutinized, becoming a subject of
storytelling and puzzling. What are they trying to tell me?
parents wonder. What are they hiding? Do they treat me
this way because I’m black? A man without a job? A single
mother? Do they think I’m a “ghetto mom”? Do they
think I’m abusing my child? Are they experimenting on my
child? Are they ignoring me because I’m on Medicaid? Do
they think I’m not strong enough, bright enough, educated
enough, to hear the truth? These are the sorts of questions
asked by families in our research, and they are asked again
and again.

Mattingly, C. (2006). Pocahontas goes to the clinic: Popular culture as lingua franca in a cultural borderland. American Anthropologist, 108(3), 494.

]]> http://rarediseasesupport.org/2010/02/25/power-culture-and-health-care-quality/feed/ 0 Waiting to see a specialist http://rarediseasesupport.org/2010/01/12/waiting-to-see-a-specialist/ http://rarediseasesupport.org/2010/01/12/waiting-to-see-a-specialist/#comments Tue, 12 Jan 2010 18:16:50 +0000 Nora Murphy http://rarediseasesupport.org/?p=234 I can’t imagine having to wait months to see a specialist.  I remember in January of 2008 when my son was diagnosed with a rare pediatric disease, Juvenile-onset Recurrent Respiratory Papillomatosis(JORRP), a condition in which benign tumors grow in the larynx with the danger of growing to the point of airway obstruction.  I walked out of [...]]]> I can’t imagine having to wait months to see a specialist.  I remember in January of 2008 when my son was diagnosed with a rare pediatric disease, Juvenile-onset Recurrent Respiratory Papillomatosis(JORRP), a condition in which benign tumors grow in the larynx with the danger of growing to the point of airway obstruction.  I walked out of the doctor’s office crying and made my way down the hall to the scheduler who told me matter of factly that the next available surgery date was one month away.

One month? (I wanted to yell) You give my son a diagnosis of a potentially life threatening disease and the best you can do is find time for us a month later?  Can you possibly be taking my son’s condition seriously?

This experience came to mind when I read an article in the Wall Street Journal today which stated that hospitals are reporting that jobs for the top pediatric specialties are going unfilled for a year or longer; specialties such as pediatric-rehabilitation medicine, hematology and oncology, and cardiology.

For families, this often means waiting for months to see a specialist and incurring heavy travel costs, often to another state.

Below is a chart that shows states that lack a physician in at least one sub-speciality.

To read more, click here.

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