PERSISTANCE is the most important skill needed when negotiating patient advocacy issues. Whether it be for yourself or a loved one suffering with CRPS, persistence will become a tool that must be utilized to ensure proper treatment and enable CRPS patients the ability to utilize the services legally available to them.

Pain patients are a vulnerable population. Insurance companies, government agencies and social services are well aware of this. The response to your first claim or request will usually be a denial. Be strong—they don't expect you to be—so be strong and appeal! The squeaky wheels gets what they want.

Insurance companies and HMOs will deny claims for in-patient services, physical therapies, brand name medications and services offered outside of the network. The key is not to accept "NO"for an answer. Know your rights.

1. If an HMO cannot provide appropriate services within their network—they must pay for you to go out of network.

2. A physician may require and prescribe a name brand drug in lieu of a generic drug. The insurance company must provide the name brand drug at the co-pay cost regardless of the availability of the generic drug.

3. Social Security may deny your first claim for benefits. APPEAL! New wording is being established for CRPS and hopefully claims will be approved more expeditiously in the future. Until then—APPEAL!

4. Worker's Compensation requires the same tenacity—APPEAL its denials.

5. Your local school system may tell you they cannot provide modifications for your child, home tutoring, or the combination of the two. This is discrimination and you have rights. Read the pamphlet they provide. Get your child referred to special education or 504 status. They must provide an appropriate education to all children under the age of 18 in a public school setting. Ask for assistive technology testing, neurological testing, tutors, transportation, and individual education plans. It is your child’s right and you pay taxes to receive these services.

6. Do you or your loved one need special services? Call on your state's Department of Social Services. Make an appointment and find out what services are available.

7. Do you or your loved one want to get back to work—even part time? Then call on your state Department of Rehabilitation. Learn about vocational rehabilitation.

If you are having a problem with one the agencies, pick up your phone and call the Commissioners Office. Go right to the top. They may direct you to another person; but the directive has come from the Commissioners Office and they don't like adversity.

If going to your Commissioner doesn't seem to help—call your local newspaper, television network or even go to the Office of Consumer Protection in your particular state. Tell your story. You will be surprised at how fast things will get rectified. Don't be afraid to fight for your rights or the rights of your loved ones.

Reflex Sympathetic Dystrophy is a very complex disorder. Assistance doesn't come easy. In short, never accept "NO" for an answer. Awareness is a key element in solving these dilemmas. Be verbal, be informed and most important —"Be Persistent!"

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