Interview with Karen Selby, Patient Advocate & RN

The process of being diagnosed with mesothelioma or another asbestos related disease (ARD) can be a very confusing and trying time for a patient and their family. Many patients are not aware of patient advocacy services, what they do, or how you find them. We were fortunate enough to have one of our Patient Advocates at The Mesothelioma Center give us a detailed description of what she does for patients and their families.

About Patient Advocates

What is a Patient Advocate?

If you look up the definition of a Patient Advocate, it will say “A liaison between a patient and their health care providers to ensure that the patient understands procedures, thereby reducing fear and increasing patient compliance. This results in a higher percentage of successful treatment” This definition encompasses just a portion of what a PA can do. In addition, they act as a resource and facilitator to assist in the process, such as appointment scheduling or finding a specific specialist. They can also research specific information such as finding a local support group and helping a patient understand a specific issue unique to them. They can provide support and assurance to one during the darkest time of their life.

Do PA’s charge for their services?

The Patient Advocates at Asbestos.com do not charge for any services. All of our literature and services are free.

When are you available for patients?

The PA’s are typically in the office from 9 – 5 week days. However, since this is not a 9 to 5 type of job, they can be reached most any time. The toll free number will be answered by a Patient Advocate. 

How many hours a week do you work?

I typically spend about 35 hours at my office per week. But, technically never am off. Due to peoples/ patients work schedules, they prefer to connect with me in the evenings and weekend. I often spend a couple hours each evening and on the weekend assisting people with various issues.

You are an RN; do all PA’s have to have a health care background? And what would be the advantage?

I am a registered nurse. There is currently no specific training or certification program for Patient Advocates. However, being a healthcare advocate can be a bit challenging if you don’t have a HC background, specifically when dealing with the unique disease such as mesothelioma. Here at the mesothelioma cancer center, I am the only RN on staff however, our other patient advocates have been trained extensively to assist patients and their families afflicted with this disease. I am also always available to aid the other PA’s if there are any medical questions or issues that they have.

What Patient Advocates do for Patients

Do you only work with mesothelioma patients or patients with other diseases?

As stated above, there are a variety of unique Patient Advocate that specialize in specific things. I focus on assisting patients that need assistance in the arena of asbestos related diseases. From a recent “one time” exposure to diagnosing and treating and asbestos related disease such as mesothelioma or lung cancer.

In addition to managing health, what else do you assist with?

In addition to HC assistance such as finding a specialist or explaining an impending surgery or treatment, for example, PA’s can assist with things such as explaining social security benefits and detailed instruction to aid in the application process, explaining VA benefits and the application process, researching specific topics unique to that individual and providing access to literature, aiding in connecting a patient to a support group or even providing guidance or how to choose an attorney that best suits their needs.

What other tasks are you faced with by being a PA for mesothelioma patients?

• Helping find the best doctors and treatment facilities in their area. We have a outreach director on staff that actually goes to these specialty facilities which makes us more equipped to make the best connection for these patients;
• Providing access to local support groups;
• Explaining the disease process and what to expect;
• Providing free literature and informational books on asbestos-illnesses;
• Helping veterans to receive their VA benefits for asbestos-related health issues;
• Explaining social security disability benefit options.
• Facilitating other types of financial assistance, such as legal option guidance. We are not a law firm but like to provide criteria important in choosing a qualified and reputable law firm.

How many patients do you speak with a day?

I usually speak to 3 or 4 new patients or their family members a day.

What are patient’s fears of working with a PA?

I think that patients hesitate to connect because they think that, even though we advertise that these services are free, there is a catch. There is no catch. At the mesothelioma cancer center, we understand that when a family is faced with a diagnosis such as this, their lives are instantly turned upside down. This program was created to help these families get the resources and answers they need in an expedited way.

What are the most challenges you deal with?

That’s a hard one. I guess the most challenging is connecting with the patient. I know there are many people that are on the website, asbestos.com, because they are faced with this diagnosis or have a family member that is, and need answers but they never call me or submit the request for the free information packet. I have no way of connecting with them to be able to offer my services. I think they are missing out in a wonderful service we offer here.

We would like to thank Karen for sharing this valuable information with our community. For additional information on getting connected with a Patient Advocate visit the patient resources section of Asbestos.com. What has your experience been like with a Patient Advocate? Let us know on our Facebook and Twitter.