When it comes to support and assistance for the Parkinson’s community, most effort is property focused on the needs of the person living with the disease. But behind many patients, there is a family caregiver providing support to the patient on a continual basis. Often, the family caregiver is a spouse or an adult child of the patient, who may have other family obligations and career to manage, in addition to seeing to the evolving needs of the patient.

Besides basic support for the patient, the increasing complexity of our healthcare system has generated an expanding list of challenges. These include a myriad of treatment options, some of which may, or may not, be covered through patient insurance benefits. Even when covered, studies show more than 50 percent of all medical bills contain errors, typically due to improper coding. This has led to a greater challenge in dealing with coverage. Most of us, as healthcare consumers, are feeling the pinch of increase premiums and decreased benefit coverage. These complicated issues are oftentimes left to the family caregiver to resolve

The Center for Patient Partnership (CPP) at the University of Wisconsin – Madison has been training post-graduate patient advocates for several years. It is one of only a couple programs throughout the nation to do so. The CPP offers a free helpline, manned by the program’s students, to provide guidance on how to resolve issues. Some advocates go on to work for healthcare providers and healthcare insurers, but they are bound to the systems which employ them, which may not provide the necessary support for the patient and caregiver.

In an attempt to meet these unique needs, there is an emerging service, private patient advocacy, that is becoming available nationwide. Private patient advocates are focused on the needs of the patient and caregiver, providing assistance to the caregiver in resolving priority issues with which the caregiver is struggling. Services may include accompanying the patient on doctor visits, investigating billing errors, and resolution of billing issues with healthcare insurers and providers. This assistance, which is available through private patient advocates firms or some community support systems, focuses on the unique needs of the patient and results in significant reduction of the stress levels of the caregiver. Some patient advocacy firms may also provide care coordination and provide recommendations on employment and ADA issues. Most will be able to connect you with additional resources in your community.

To ensure consistency of service, patient advocates are encouraged to become accredited and board certified by the Patient Advocate Certification Board. Several organizations are dedicated to providing vetted access to patient advocates throughout the nation, such as Advoconnnection.