Response to Tara Parker-Pope’s “You’re Sick. Now What?”Comments on: -- http://e-patients.net/archives/2008/10/response-to-tara-parker-popes-youre-sick-now-what.html because health professionals can't do it alone Sat, 11 Feb 2012 08:53:56 +0000 hourly 1 By: carolyn chamberlain http://e-patients.net/archives/2008/10/response-to-tara-parker-popes-youre-sick-now-what.html/comment-page-1#comment-662 carolyn chamberlain Mon, 20 Oct 2008 00:59:33 +0000 http://72.9.147.40/archives/2008/10/response-to-tara-parker-popes-youre-sick-now-what.html#comment-662 Christine, Thank you for this informative overview of your daughter's experience. Just as businesses and foundations are being required, the medical community must provide a higher level of transparency, accountability and communications, including readily available and timely patient lab reports and medical files. Carolyn Christine,
Thank you for this informative overview of your daughter’s experience. Just as businesses and foundations are being required, the medical community must provide a higher level of transparency, accountability and communications, including readily available and timely patient lab reports and medical files.
Carolyn

]]> By: Patty Feist http://e-patients.net/archives/2008/10/response-to-tara-parker-popes-youre-sick-now-what.html/comment-page-1#comment-515 Patty Feist Tue, 07 Oct 2008 17:28:28 +0000 http://72.9.147.40/archives/2008/10/response-to-tara-parker-popes-youre-sick-now-what.html#comment-515 Christine's comment that she was "guided by a sophisticated ACOR list whose members were at ease with PubMed, the NCI sites and more" should ring a loud bell in the health care community. As a list administrator for several ACOR pediatric cancer lists, this is exactly what I observe in each list: A core contingency of educated and journal-article informed members who set the bar for list discussions. When listmember parents approach their child's health care team with questions, they should be - and usually are - listened to. If they are ignored, or if they don't like the answers they are given, they network with other parents to find more suitable treatments and doctors. Another issue has been one of my crusading points for years. Before treatment can begin, the cancer must be diagnosed as such (and properly). I have read time and time again diagnosis horror stories of ACOR listmembers. Many childhood cancers are not diagnosed until many weeks of repeated, non-productive visits to a pediatrician (or PCP), and by that time the cancer has advanced to a higher stage and has to be treated more aggressively. Granted, any one pediatrician may see few or no cases of pediatric cancer in his or her career, still, doctors need to be constantly alerted to the symptoms of childhood cancer. Parents too need to be educated. I wrote a web page on the <a href="http://www.acor.org/ped-onc/diseases/SOCC.html" rel="nofollow">signs of childhood cancer</a> and have tried to get a pamphlet of these signs into pediatric doctor's offices. Currently, <a href="http://www.candlelighters.org" rel="nofollow">Candlelighters Childhood Cancer Foundation</a> is in the process of producing just such a pamphlet. Kudos to Christine for her work to alert all of us to the issues of pediatric sarcomas. Christine’s comment that she was “guided by a sophisticated ACOR list whose members were at ease with PubMed, the NCI sites and more” should ring a loud bell in the health care community. As a list administrator for several ACOR pediatric cancer lists, this is exactly what I observe in each list: A core contingency of educated and journal-article informed members who set the bar for list discussions. When listmember parents approach their child’s health care team with questions, they should be – and usually are – listened to. If they are ignored, or if they don’t like the answers they are given, they network with other parents to find more suitable treatments and doctors.

Another issue has been one of my crusading points for years. Before treatment can begin, the cancer must be diagnosed as such (and properly). I have read time and time again diagnosis horror stories of ACOR listmembers. Many childhood cancers are not diagnosed until many weeks of repeated, non-productive visits to a pediatrician (or PCP), and by that time the cancer has advanced to a higher stage and has to be treated more aggressively.

Granted, any one pediatrician may see few or no cases of pediatric cancer in his or her career, still, doctors need to be constantly alerted to the symptoms of childhood cancer. Parents too need to be educated. I wrote a web page on the signs of childhood cancer and have tried to get a pamphlet of these signs into pediatric doctor’s offices. Currently, Candlelighters Childhood Cancer Foundation is in the process of producing just such a pamphlet.

Kudos to Christine for her work to alert all of us to the issues of pediatric sarcomas.

]]> By: Susannah Fox http://e-patients.net/archives/2008/10/response-to-tara-parker-popes-youre-sick-now-what.html/comment-page-1#comment-514 Susannah Fox Tue, 07 Oct 2008 15:07:18 +0000 http://72.9.147.40/archives/2008/10/response-to-tara-parker-popes-youre-sick-now-what.html#comment-514 Christine's post has been <a href="http://www.thehealthcareblog.com/the_health_care_blog/2008/10/pediatric-cance.html" rel="nofollow">re-published</a> on The Health Care Blog in case you want to join the discussion there, too. Christine’s post has been re-published on The Health Care Blog in case you want to join the discussion there, too.

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