Taking Flight: Achieving Excellence in Health Care for All Children is the theme for the Sixth Annual Forum for Improving Children’s Health Care, slated for March 19 through 21 in San Francisco, CA. Because the goals of the National Initiative for Children’s Healthcare Quality (NICHQ; www.nichq.org) and its Forum impact children with epilepsy, we spoke with Charles Homer, MD, MPH, President and CEO of NICHQ, and also Sarah S. Bloor, MS, project manager.

An Interview with Dr. Charles Homer

Q: What is the basic premise of the National Initiative for Children’s Healthcare Quality?

A. The premise of our organization is that child health and well-being can be much improved if the health care system worked better. Our goal is to improve children’s lives by improving their health care. We emphasize improving the care of children with chronic conditions -- special health care needs -- because these children suffer the greatest consequences when the health care system does not work up to its potential.

Children should be offered the best clinical care according to current evidence. And we believe that parents and the youth themselves, over time, must be supported in making decisions about management. Because so many participants are involved in providing care to children with special health care needs — parents, primary care doctors, specialty doctors, school and after school personnel, therapists, and many others — the efforts of all those involved must be coordinated to work together, like musicians playing different instruments together making music in a symphony.

Q: Do you see specific challenges with regard to epilepsy?

A: We are currently involved in a project that tackles two specific challenges posed by epilepsy. First is the obvious shortage of pediatric experts in childhood epilepsy. Neurologists and epileptologists should not have to be the only ones providing the care. We need to reorganize the system so that primary care clinicians can play a greater role in early diagnosis allowing the specialists to do what they do best – making difficult diagnoses, selecting appropriate medication and establishing clear targets and goals. Our main priority must be to develop ways for primary care and specialty care to work together and thereby increase the capacity of the system.

Second, we need to build broader recognition of and greater system capacity to address the many needs that children with epilepsy have in addition to seizure control. The health care system must also pay attention to behavior, learning, family function, ability to work, transition to adult care and a wide variety of issues beyond the seizure-free status.

We have seen significant progress in several of the programs on epilepsy within our national effort. We will be highlighting these successes and the lessons we have learned at our National Forum.

Q. How is this conference different from others working to improve children’s health care?

A: We believe that families are the true experts in knowing what their children need. At the clinical level, we are working to change the paradigm from the doctor is in charge (the “captain of the ship”) to the family is in charge. In this way the doctor/health care system functions as a “coach,” bringing out and strengthening the capabilities of the family and child.

Families must be involved also in the improvement process, participating with doctors, nurses, and staff in setting priorities and coming up with new and better ways of organizing and delivering care. In our epilepsy project, we have a parent, Elizabeth Aquino, serving as faculty co-chair of the entire initiative, and each team has parent partners actively involved.

Q: What do you hope to see as a result of the Forum?

A. Family members moderate most workshops and there are special interest gatherings for families to exchange ideas. We are particularly excited that we have received a grant from Parents Against Childhood Epilepsy (PACE). People who come to our Forum are motivated to work to make change happen. They hear good ideas, and then go home and apply them. My hope is that will come away with two or three new strategies -- nuggets of ideas -- that they can test and try and make them work.

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An Interview with Sarah S. Bloor

Sarah S. Bloor, project manager for the National Initiative for Children'sHealthcare (NICHQ), is an advocate and educator. “I am looking at ways to improve healthcare for others living with epilepsy and other chronic medical conditions,” she said. For Sarah, her mission is deeply personal. At age 22, just six weeks before graduating from college, she was diagnosed with epilepsy. Her goal was to be a doctor, but she was confronted with the problems often faced by those with epilepsy. “I was told that I should not graduate from college; and that I would never be able to work, drive, or become a doctor. Although I have never given up on my dream of becoming a doctor, I did come to realize that it was more important for my voice to be heard. I did not want others to have to experience what I had experienced,” she added.

While doing graduate work, Sarah came across the NICHQ website. “Their goals, purpose, and mission are in line with my work,” she said.

Three years after being diagnosed with epilepsy, Sarah was also diagnosed with Systemic Lupus Erythematosus (SLE) and Rheumatoid Arthritis. “One with (SLE) can have seizures with this disease,” she pointed out.“My lupus is currently is in remission and has been for 10 years. I made the decision that I wanted to live my life and not my chronic illnesses. At one time my life was consumed by doctor appointments and lab work. These days I have built into my life precautions and preventive measures, so I can live as normal a life as possible with my conditions. Therefore I do the things I like to do without putting myself at risk to trigger a seizure."

A voice for those with epilepsy

“For me one of the most difficult things I faced was the way people treated me when they heard that I had epilepsy. I could see the look of sheer panic. I was fortunate in that I had a job with the Epilepsy Foundation, and started the first camp in New England for children with epilepsy. It allows a safe place where children can be themselves and no one will make fun of them when they go into a seizure,” she said.

Sarah is a voice for those with epilepsy educating the medical community and policy makers. In the 80s she spoke at the Americans with Disability Act Conference to facilitate passage of the new legislation. She has raised funds to start local, regional and national programs. “I work at bridging the gap between those with disabilities and those without disabilities. I help break barriers. People with epilepsy become very isolated. Having a seizure in public and people not knowing what to do can create such embarrassment that it is easier to stay at home and be isolated. I try to teach people that they need to take the precautions without letting the disorder take over their lives.”

In the past three years Sarah has earned masters degrees in Organizational Management and Leadership, Health Care Systems Thinking, and Health Care Administration.

Sarah emphasized how excited she is to be a part of the Children’s Forum. “We think it is such an important means of bringing together parents and professionals. To encourage parent participation, scholarships are being offered.”

For information regarding PACE scholarships please contact Laura Magoun, at lmagoun@nichq.org, or call 617-301-4902.

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Edited by Steve Schachter: 03/01/07