Finding common cause between epilepsy and behavioral health

Just a few short days ago, I had a wonderful opportunity to participate in a Skills Building Conference held annually by the Epilepsy Foundation. The primary purpose of this year’s event was to develop strategies for organizing communities of practice at all levels—local to national—including partners from allied fields like mental health and substance use.

Epilepsy is a very serious disease that affects about 3 million people (1% of the U.S. population), with annual healthcare costs in excess of $4.3 billion. It is more prevalent among adolescents and older persons, yet can occur at any age. It is very treatable and can be controlled, yet almost one-third of those with this disease have uncontrolled seizures and do not receive needed care. If epilepsy remains untreated, it is likely to lead to early death. Most healthcare providers are not trained in appropriate procedures for epilepsy care.

Like mental disorders and substance use conditions, epilepsy occurs much more frequently among persons who are poor. Because many people in the community lack knowledge of epilepsy and become afraid when they witness a person having a seizure, those with this disorder often are subjected to stigma.

The Centers for Disease Control and Prevention (CDC) provide national leadership to the epilepsy field. In this capacity, the agency fosters partnerships with key organizations to train providers on good epilepsy care and to educate the broader community to reduce the stigma associated with this disorder. A special focus of this work is the development and dissemination of self-management programs to control seizures. Recently, CDC awarded a five year contract to the Epilepsy Foundation to undertake technical assistance, coalition building, and support for pilot efforts to develop the capacity of the epilepsy field.

Epilepsy should be of great concern to the behavioral health field. The rate of serious mental illness among persons with epilepsy, about 12%, is three to four times the overall rate in the U.S. population. Depression occurs very frequently in this population and often remains untreated. Epilepsy is neither recognized nor treated in most behavioral healthcare settings.

If we consider all these factors, it should come as little surprise that the issues confronting the epilepsy field are the same issues that we seek to address in behavioral healthcare. Further, the likely solutions to these issues are the same ones that we currently are developing. Thus, we have an exceptional opportunity for synergy between epilepsy and behavioral health that can be of great benefit to both fields.

Here are several core issues that the epilepsy communities of practice intend to confront which are of equal concern to behavioral health:

Recognition and assessment

Issue: Health and behavioral health programs often fail to recognize and assess epilepsy. (As an instance, does your program currently assess for epilepsy?)  Further, epilepsy programs fail to recognize and assess mental illness in persons who are receiving care.                                                                                                                                                                 

Recommended action: Develop and test pilot programs that cross train in recognition and assessment between epilepsy, behavioral health, and health.

Good integrated care

Issue:  Almost without exception, integrated care programs for behavioral health and primary care which are being developed and implemented under the Affordable Care Act (ACA) fail to include any capacity for epilepsy identification, assessment or treatment.                                                                                                                                                            

Recommended action: Develop and test pilot programs that add an epilepsy specialist to medical homes and health homes.

Empowerment and self-management

Issue: Consumer empowerment through peer led self-management and recovery programs remains a distant goal for the epilepsy field.                                                                                                                                                                  

Recommended Action: Develop and test pilot programs that import peer led wellness programs from behavioral healthcare into epilepsy programs, and add peers with epilepsy to behavioral health programs.

I strongly encourage you to reach out to your local Epilepsy Council to foster an effective partnership around these key issues. NACBHDD and NARMH will be seeking to develop similar partnerships in county behavioral health and ID/DD settings.

Our hats are off to Rosemarie Kobau, team lead for epilepsy at CDC, and to Steve Owens, vice president of programs and services at the Epilepsy Foundation, for outstandling leadership and vision in moving the epilepsy field forward. We look forward to working with both of you in this very important endeavor.