Caring for yourself when you have cystic fibrosis or for a child who has CF goes beyond doctor visits, treatments and medications. The personal accounts included in this article demonstrate a need for advocacy in health care. It is important for parents to learn how to advocate for children too young, too sick or too vulnerable to speak up for themselves. When parents express concerns and question doctors, they are teaching children how to advocate for themselves as they grow into teenagers and young adults. By adulthood, the individual with CF ought to have a clear understanding of the disease, as well as knowledge and acceptance of his or her own body and its needs. In order to advocate for oneself, the CF adult should feel comfortable discussing his or her own experience of the disease with a professional. Additionally, he or she should possess a sense of self worth that permits questions and open disagreements with doctors, as well as requests for whatever kind of medical care he or she feels is necessary to stay healthy.
Kathy McCarthy-Proulx, a health professional, states in the Crossroads Newsletter (Winter 1994), "When it comes to your child, you are the expert. You have known your child longer and more intimately than anyone else....You alone hold the vision of your child's future. Professionals will come and go from your child's life, but you will remain a constant fixture; your child's lifelong advocate."
McCarthy-Proulx continues: "You [parents and CF adults] are consumers of services which you purchase with your tax dollars, your insurance premiums and your charitable contributions.... Like consumers of any product or service, you have every right to comparison shop, gather information on available services, go to the library, interview personnel, visit programs, talk to other consumers, and consult with professionals. Then, as a well-informed consumer, you will be able to select the program or procedure that best meets your needs."
Following are three personal accounts by CFRI members that help to illustrate both the challenges and rewards in health-care advocacy. If you have an advocacy story to share with our readers, please send it to the Editor at the CFRI office address.
Our 13-year-old son required immediate hospitalization. At the hospital his IV was started and he was wheeled up to a hospital room that he was to share with another CF patient. Since many CF patients have Pseudomonas aeruginosa colonized in their lungs, I raised concerns about my son having to share a room with another patient. I then asked to have our son put in another room if indeed my concerns were well-founded. The nurse called the doctor and our son was immediately put in a private room. An hour later, the admitting doctor came by to discuss my request for our son's relocation. While he admitted that there was a slight chance our son could catch this infection from his former roommate, he considered my concerns to be "hypervigilant." espite his disagreement with my concerns, I held my ground.
I had recently read a European CF study indicating that each night two CF people with differing bacterial infections slept in the same room, they had a 2% chance of catching each other's infections. More current research indicates that cross-infection between CF patients should be taken very seriously. Now, all CF patients at our CF Treatment Center are placed with roommates having similar bacterial infections. Hopefully, this is happening in your hospital too. You have a right to speak up on behalf of your child.
When our CF daughter was 19-months old, she would not eat. Even though her pediatrician had no experience with children who would not eat, our HMO was reluctant to refer her to an outside eating-disorders clinic. While my daughter survived on a feeding tube, I researched and developed (with the help of a psychologist and pediatrician) an eating disorders program for our daughter that could be carried out at the HMO's own hospital. Then I started a letter writing campaign insisting that they implement the program. I made many visits to the HMO's administrative offices with my children in tow, purposefully ignoring their loud and disruptive behavior. Ultimately, the HMO allowed me to initiate the program that was so vital to my daughter's well-being in their hospital facility.
In just one month, our daughter was eating on her own and gaining weight without using her feeding tube. The HMO worked from the premise that I was "just a parent" and didn't know what I was talking about. But by being available for my child and wanting to help her, researching the disorder thoroughly and working with other health-care professionals, I educated myself beyond their assumptions and found the courage to challenge them. Knowledge is a powerful tool which had a direct impact on my child's health. Happily, she is currently doing very well.
I am a 55-year-old CF adult with two children of my own. One was recently diagnosed with cystic fibrosis. For me, advocacy on behalf of another person was always far easier than advocacy on behalf of myself. Like the proverbial mother tiger, I fought selflessly and articulately for the best medical care for my own daughters, for my husband, for my mother and for my mother-in-law. But for myself and my own medical welfare, it was quite another matter. It took me years to rouse my energy and sense of what I had a right to-adequate medical care as a CF adult-and then to act upon it. After a lifetime of experimentation and learning, I have compiled the following rules for my own self-advocacy as a CF adult.
First of all, prior to an appointment I keep a running list of anything that might be relevant to a particular doctor: complaints, compliments, questions, ideas, or feedback on the last treatment. I write down their responses, their new ideas, or anything important to me (test results, etc.).
Often I give a copy to the doctor. I choose my doctor and then am careful to follow his or her advice at least long enough to give it time to work. If I disagree with the advice, I speak up immediately. When I disagree, I am respectful and objective. I accept that even when it appears otherwise, he or she is trying to help me. In the end I know it is my life and I have to live with the course of treatment. I decide. If a course of action is not working, I contact the physician immediately. Whenever possible, I choose specialists whom my CF doctor or primary care physician recommends. If I dislike a specialist, I go back and get another recommendation until I am satisfied. I want a team that knows each other and works well together.
I make arrangements so that my CF physician reports regularly to my primary care physician (internist). I keep my primary care physician and CF doctor up-to-date on my visits to specialists by sending copies of my notes. (Generally specialists should send their own reports to primary doctors, but I don't rely on them.)
I make an extra effort to introduce myself to nurses and ancillary staff. These relationships are highly important to me as these people are often my first access to a doctor.
Finally, I keep myself completely abreast of my health situation, both my personal condition and current trends in treating my disease. I read everything I can get my hands on about CF, including CF newsletters and medical journals. I attend conferences and lectures regularly and make use of local health libraries. And I maintain a solid network of friends and acquaintances in the CF community who share information and can offer me advice and support if I need it.
To educate yourself we at CFRI urge you to read CF newsletters (not just CFRI's!) and CF journals, attend CF conferences and talk to other parents when you feel confused or need support. And if you don't feel that you have the strength to take on a doctor or the system alone, bring a friend who can support you. Parents and adults need advocates too!
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