BEING YOUR OWN ADVOCATE

Excerpted from Cancer Care.org. For more information see the Cancer Care web site http://www.cancercare.org or contact them directly at 1-800-813-HOPE.

If you or someone you love has cancer, you certainly want the best medical treatment you can get. Would it surprise you to learn that you might not receive it unless you ask for it?

Even though the United States offers some of the best medical care in the world, your health care provider won't do all of the work for you. Part of the responsibility for getting what you need is up to you. You may need to do your own homework (or ask someone to do it for you), know what questions to ask, and what answers to look for. This process is known as advocating. This Brief will help you learn how to be an effective advocate for yourself or for someone you know who has cancer.

Whether you are your own advocate or are helping to advocate for someone else, the following steps can help you take action and reach your goals.

Identify Your Needs and Don't Be Afraid to Ask Questions

Cancer is a complex disease that can bring about many challenges — medical, financial, emotional, social, and legal. You will need a variety of information and services at different times. First, try to sort out your different needs so that it will be easier to know who is best able to help you with each one. For example, you might want to separate the following: medical issues, which you can discuss with your doctor; insurance coverage, which you can review with your insurer or a claims expert; job-related and/or financial issues, which you can discuss with your employer, an accountant, or lawyer; and personal issues, such as homecare and transportation, which you can discuss with your family.

Cancer Care social workers can help you to separate and prioritize your concerns. By taking the time to sort through the issues to be addressed, carefully articulating the questions you need answered, and deciding in advance who can best help you with each matter, you will make the task much easier for yourself.

It is always helpful to think out, and even write down, your exact questions or concerns before a meeting or conversation. If your question is focused and direct, the person helping you can more easily provide you with a clear and explicit answer.

Be Assertive and Persistent

Once you have identified your needs and know what you want, assert yourself in a way that makes people respond positively. Getting what you want can sometimes be a frustrating process, but the key is to be clear and persistent while remaining reasonable and patient.

Let's say you are experiencing pain, but having difficulty getting treatment for it. By being persistent with your request, you will send the message that you have a real problem and that you want it solved as soon as possible.

You may find yourself negotiating your way through similar situations when dealing with other specialized personnel such as hospital billing clerks, insurance representatives, employers, government agency staff, and others. They may use terminology you do not recognize or treat you in a way that seems unsympathetic. The most important thing for you to do is to keep the discussion focused on your problem or need in order to find solutions.

Here Are Some Tips:

• Be patient and express yourself clearly. Be willing to listen, because you may hear important and helpful information.
• Use the chain of command to your advantage. If one person is not giving you satisfactory results, look to the person in charge to help you address your concerns.
• Even if you find yourself getting angry, it may be more useful to say so, rather than lose your temper.
• Know your rights. You are entitled to be treated fairly and with equality. If you want to appeal decisions you feel are unjust, obtain clear written information about your appeal rights. Then, find out what steps you should take.
• Believe in your abilities. You can take charge and be a powerful advocate for your interests and rights.

People with cancer often feel changed by the experience and are surprised to discover how dramatically they have gained a new sense of confidence and an ability to assert themselves. After treatment, some people want to give something back by getting involved in efforts to improve society's understanding of cancer and the needs of people and families coping with the disease.

The cancer-survivor movement is the result of many of these experiences and emotions. It consists of efforts by many to educate and sensitize health professionals, the public, the media, elected officials, and others about cancer so that they will respond appropriately.

Interestingly, the skills one needs to advocate effectively on the larger scale are generally the same as those described for self-advocacy. AIDS activist Jay Lipner was once asked by a reporter to comment on the key to his effectiveness. He said, "I'm reasonable, I know what I'm talking about, and I don't go away." In other words, Jay excelled in gathering information and negotiating, then made it clear that he had enough passion and persistence to follow through on his demands. While not all patients or their advocates will choose to plead their case all the way to the United States Congress as Jay did, it's great to know that if you wanted to, you could do it!

Remember That You Are Not Alone

There are many local organizations and advocacy specialists in your community who can provide valuable guidance and support.

• Patient representatives, who are available through hospitals, clinics, and insurance companies, can help answer questions about the services you are receiving.
• Lawyers or financial planners who specialize in patient advocacy are also knowledgeable about your rights and options.
• Cancer Care, Inc. social workers are available to work with you one-to-one to discuss your specific concerns. Call The Cancer Care Counseling Line at 1-800-813-HOPE (4673).

Whatever you choose to do, reaching out for help is an important step toward advocating for yourself and getting the services you need and deserve.

© 2001, Cancer Care, Inc.