“A time of illness is a stressful time for patients as well as for their families. The best-laid plans can go awry, judgment is impaired, and, put simply, you are not at your best when you are sick. Patients need someone who can look out for their best interests and help navigate the confusing healthcare system – in other words, an advocate.” ~National Patient Safety Foundation
A few years ago I found myself at a crossroad when I wanted to reinvent my professional life by devoting myself toward helping others navigate the difficulties of living with a chronic illness. The complexities of our healthcare and health insurance system combined with the physical and emotional toll of understanding and coming to terms with a diagnosis can be overwhelming.
I wanted to be someone that people felt they could turn to for help.
The question was how I was going to accomplish this. What steps did I need to take to combine my experience and skills in order to help others?
After a lot of soul-searching and research I decided to become a health advocate. I found a program where I could earn a certificate in patient advocacy, an emerging field where advocates are hired to help patients with their healthcare needs.
I became acquainted with many remarkable people working in the industry, and a few who established patient advocate organizations dedicated to helping countless families feel less confused and alone when faced with a health crisis.
One such person is Elisabeth Russell, Founder and President of Patient Navigator, and Past President of National Association of Healthcare Advocacy Consultants (NAHAC). Elisabeth is an extraordinary woman who, after navigating her 2-year-old daughter’s journey through an inoperable brainstem tumor, decided to commit her life to teaching and helping others. When I asked her to tell me her definition of a patient advocate, she replied:
“When serious illness strikes, patients are generally thrown into an unfamiliar universe with no lifeline. It’s stressful to try to navigate our confusing healthcare system during a time of fear and vulnerability. A patient navigator or advocate has already mastered that learning curve. An advocate’s job is to guide you through the process, whether it is to provide you with research, tackle insurance issues, find top-notch medical care or connect you with the resources you need. Working with an advocate relieves the stress of managing a complex illness so that the patient can focus on healing and recovery.”
When living with Multiple Sclerosis we are faced with daily struggles that can sometimes feel mind-boggling. We have to schedule (and remember) doctor appointments, make decisions about which medications to take, file numerous insurance forms, manage hospital stays (sometimes worrying about childcare or taking care of our aging parents while we are away) arrange for transportation to appointments, and deal with the emotional toll of living with an unpredictable disease.
A patient advocate can provide assistance with all of these needs. And more.
Another acquaintance I made is Joanna Smith, LCSW, MPH, CHA who is CEO of Healthcare Liaison and Founder of the National Association of Healthcare Advocacy Consultants (NAHAC). Joanna addressed my question on how advocates can help people with MS:
“I am frequently asked, ‘How do I know if I need an advocate?’ I think there are certain circumstances when an advocate can really help:
- When you are just diagnosed with MS
- When you are trying to figure out treatment options or want a second opinion
- When your insurance denies a treatment option
- When you experience the stresses in work and family
What can an advocate do?
- Clarify information
- Help you ask the right questions
- Help develop a comprehensive plan
- Find physicians for second opinions
- Ensure good communication with your providers
- Work with you and your loved ones”
A recent article, “Advocates on Your Side” appeared in Momentum, the magazine published by The National Multiple Sclerosis Society. It explained how “specialists” could help someone with “treatment options, care plans, medical bills or insurance claims.” Along with explaining the different types of advocates that are available, it also provides several resources to help you manage your MS. I urge you to read this important article to help you decide what type of advocate would best suit your needs.