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Boston Globe
May 17, 2004

Health care for kids: One mother's ordeal
By Sally Sampson

MY DAUGHTER -- my smart, sweet, beautiful, silly, maternal, and very high maintenance 11-year-old daughter -- has been hospitalized 40 times for pancreatitis, an illness so rare that when I type the word into my computer, I am  prompted to check the spelling.

Soon after she was born, it was clear when she cried sometimes that she was in terrible pain. Doctors thought she had a milk allergy. They thought I was neurotic. They thought she had colic. They thought I was too demanding. They  thought she had the flu. Eventually she was diagnosed with chronic recurrent idiopathic pancreatitis, which means that no one knows why she has pancreatitis but she gets it over and over and over and over again.

She has been tested for HIV, cystic fibrosis, and diabetes. She has had ERCPs, X-rays, ultrasounds, sphincterotomies, MRIs, and CAT scans. She has seen allergists, herbalists, homeopaths, hypnotherapists, osteopaths, chiropractors,  therapists, pain specialists, surgeons, geneticists, ENT specialists, and gastroenterologists too numerous to count.

I am more familiar with the medical system than I ever thought possible without actually attending medical school. So it was with great curiosity and trepidation that I read the newly released report by The Commonwealth Fund entitled 
"Quality of Health Care for Children and Adolescents: A Chartbook." The truth is, although the Chartbook describes in great detail its findings and the implications of those findings, I didn't need to read one word of this report to  know that health care for children stinks.

What this report did is make me realize that I wasn't crazy. It made me realize that I am part of a larger community of unsatisfied customers, and perhaps if the medical world saw me as a consumer of their goods, they might take a sharper look. It is not acceptable that 33 percent of all children with asthma get the wrong medication nor that the same amount of children and adolescents with cystic fibrosis not have the amount of monitoring visits they need. As a  cookbook writer, if my recipes failed 33 percent of the time, my publisher would surely not reward me with another book contract.

It would be easy to simply impugn the doctors, and I certainly have, but the truth is that they too are frustrated and trapped in the same dysfunctional system. It took the apology of one very brave and honest doctor to remind me  that doctors go into medicine to cure illness and help kids. The kinds of changes that are needed are systemic and that makes it all the more grueling.

The list of failings is chilling and not the least bit surprising: Children aren't getting enough preventive care, nor are they immunized in time. Their parents aren't being properly educated by doctors. They are getting antibiotics  when none are indicated, and they are underusing drugs which are. The medical mistakes are life-threatening. Disparities are huge among income and ethnic groups, as well as geographic. Children living with illnesses are not getting adequate access to the kinds of organized care they need. The list goes on. And on.

According to the report, "About one of three parents reported that the child's doctor or other health professional did not always communicate well. The implications: Improvements are needed to better meet parent expectations.  Interpersonal deficits in care may account for the perception of inadequate time spent with the patient and parent. Greater attention also needs to be paid to the child's role in communications with health professionals."

Ha, I say. When my daughter was 7, she struggled to let doctors know what she needed. She placed a note on her hospital door: "Please," it said in huge letters, "Remember that I am a 7-year-old person not just a patient. Knock on the door. Wait for me to say `come in.' Call my mom `Sally.' Introduce yourself. Say what you are here to do. Do not touch my belly. Do not stand in front of the TV. Thank you."

We were so proud of her ability to know what she needed; we thought she was absolutely amazing. The first doctor who saw the note ripped it off and pronounced, "You're not going to tell me what to do!"

The things that are wrong with this picture are stunning. I call these things I care about minutia but in truth, there is nothing more important than treating a child as a person who deserves respect. Perhaps if they started with  this little list, everything else would follow.

Sally Sampson is the author of 12 cookbooks and a parent liaison from Watertown for the National Initiative for Children's Healthcare Quality.