By: Cerine Benayoune
Let’s face it – navigating the healthcare system can sometimes feel like being flipped upside down. It can be disorienting, confusing, complex, and there are so many steps along the way that even those of us who have been around the block a couple of times can get distressed and disoriented. Whether you’re someone who has gone through the routine before, or whether you’re someone who recently got diagnosed with epilepsy and don’t know where to start or what questions to ask, it never hurts to have someone along with you on this journey who is specifically trained to help you as much as possible and take a bit of the load off of you.
What Are Patient Advocates?
Almost every area of your healthcare journey – you name it, a patient advocate probably does it. Medical fields and forms can be full of complicated jargon, confusing finances, and other obstacles that might make the process way more difficult than it needs to be. That’s exactly what a patient advocate is, someone who helps minimize the difficulty of this process as much as possible. Some of their responsibilities include, but are not at all limited to:
- helping with finances (reviewing and negotiating medical bills, communicating and handling problems with insurance companies, finding financial resources for patient)
- explaining things to the patient in a way that’s digestible (information on specific conditions, explaining diagnosis and medical bills, help patient fill out forms and explore different care and treatment options available)
- helping patients find support groups and communicate with therapists
- keeping an eye on medical proceedings (making notes of medical visits, going over medical charts and documents, ensure patient’s rights and wishes are fulfilled)
Who Benefits from This?
When it comes to advocacy, anyone can benefit from having extra support. However, there are many situations where a patient advocate is more than just a second opinion or someone who helps navigate finances. For some people, it could be a deeper rooted issue. One problem is rooted in identity. It’s no secret that there have been many issues in the healthcare system in terms of the way people of certain races, abilities, and looks are treated. Time and time again, those who are overweight, women (especially minorities), and those with disabilities have spoken out about the way they’re treated in the system. The complaints vary in extremity – from doctors overlooking patients’ complaints or not taking them seriously when they express concern about certain symptoms they’re experiencing and treating them like they’re incompetent, to straight up misdiagnosing them or missing an important piece of information because the doctor had been acting on a predetermined diagnosis. In cases like these, having a patient advocate on hand to confront the doctor and make sure the patients’ concerns and questions are being properly addressed could be highly beneficial, and it would make the patient more confident about speaking up if they disagree with the doctor rather than being overpowered and intimidated by the doctors’ authority. At the end of the day, the patient is the one who’s aware of how they’re feeling and experiencing, and it’s the doctor’s job to hear them out properly.
This confidence can also help people who have medical trauma. Medical trauma can lead to issues like PTSD, anxiety, depression and other problems that usually stem from traumatic experiences with medical settings, experiences, or doctors. This is especially more likely to manifest in epilepsy patients, since it’s a lifelong diagnosis and many who suffer from it have to visit hospitals often. These people may have an especially hard time being able to communicate with their doctors due to their discomfort, or may need specific accommodations to make the visit if not comfortable, then at least tolerable. Unfortunately, in our society, many times if an issue is not explicit or physical, it tends to be overlooked and many people with medical trauma may be seen as simply being dramatic, or acting up because of nerves. And because of the stigma surrounding asking for extra help, many patients feel that it’s better for them to just deal with it until it’s over, or feel too ashamed to ask for help. This is where having a patient advocate could come in handy. One important component of patient advocacy is close relationships. As mentioned previously, a patient advocate’s duties span across multiple aspects of a patient’s life, including their past history with medical care. This means the advocate has been briefed of the difficulties the patient has endured, and is usually aware of what accommodations the patient needs, or what situations would be triggering for the patient, and how to navigate these occasions. Sometimes there are uncomfortable questions to be asked, and rights that the patient wasn’t informed of. Having a patient advocate there to help with these generally makes the visits run more smoothly, as three parties are working together to ensure the appointment goes as well as possible and that all sides are getting the information they need.
How to Find one?
Over the past years, quite a number of hospitals have started to adapt this approach by having patient advocates as part of the staff, something that many people aren’t aware of and is definitely something you should ask your local hospital about. Some people don’t feel comfortable having their patient advocate be from the same hospital they go to, and would rather hire someone from a third party agency, which is completely understandable. There are many private organizations you can reach out to, who have a number of experts to choose from. Always make sure you ask your patient advocate for their credentials, and whether they’ve worked with people with epilepsy before so you have an idea of their level of familiarity and experience with your symptoms and challenges. Patient advocates from private organizations aren’t covered by health insurance, so that might get pricey for some. Not to worry! Organizations like the Patient Advocate Foundation provide services free of charge to patients across the United States, so if you’re not sure where to start or who to ask, their foundation is a good starting point not just for a patient advocate but for more detailed resources on how to navigate the healthcare system and other parties you can reach out to so that your journey goes as smoothly as possible. Don’t be hesitant to reach out, there are many people who care and want to lend a helping hand.
Resources:
Heath, S. (2020). Effective Patient Advocacy Starts with Strong Relationships. Patient Engagement Hit. https://patientengagementhit.com/news/effective-patient-advocacy-starts-with-strong-relationships
Ivey, A. (2021). What is a Patient Advocate, and How Can They Help Me? GoodRX Help. https://www.goodrx.com/healthcare-access/patient-advocacy/patient-advocate-alternate-options
Torrey, T. (2020) How to Find, Interview, and Choose a Patient Advocate. Very Well Healthy. https://www.verywellhealth.com/how-to-find-and-choose-a-patient-or-health-advocate-2614923
