If you are reading this, then you likely suffer with a chronic illness. Recently, I published an article on the treatment of patients who have 'difficult to diagnose' illnesses. I can only speak to my experience with Dysautonomia, Ehlers-Danlos Syndrome and Chiari Malformation; however, this article is applicable to many illnesses that are complicated and messy.
Sadly, we can be treated poorly as we search for diagnosis and treatment. We are complicated, messy, mysterious and definitely not a quick fix. Does that mean we should get treated any less well than the easier patients? I would hope not. My previous article mentioned contacting a patient advocate and it received a great response and prompted many questions. So, here is my follow-up. Hope it helps answer your questions.
First, I hope you never need this information. But if you do need an advocate, then perhaps you have had a negative experience with a medical professional/system. The more doctors you need to see, the more likely it is to happen. Secondly, you are not alone in this. There are many of us that have had to reach down deep and stand up for our healthcare. Living with Dysautonomia, with an average diagnosis rate of 5 years and 11 months, has given us plenty of chances to do so.
There are two types of patient advocates. One is a professional patient advocate who typically works for a hospital system or physician's office, and the other can be one of your choosing - such as a family member, friend or someone you trust to speak on your behalf. We will be looking at both roles.
When choosing someone close to you to assist you with medical issues, you may want to consider the following:
- Are they trustworthy?
- Are they well-spoken and assertive?
- Are they willing and able to fulfill the role you need them to?
- Are they able to decide quickly how they will help you in the event you cannot speak for yourself?
For instance, as much as I love my husband, I would not choose him as my advocate. I believe he is too close to me to make well-informed and unemotional decisions. As I am writing this, I am thinking of who I would choose. For me, I might pick someone who shared some of the same conditions, and who I know is already knowledgeable about them.
When deciding how you would want your personal advocate to assist you, it is a good idea to write it down and keep the document in a safe place. Make them aware of what hospitals you would choose, if you had a choice, what medications you are taking, past surgeries and whether you want them to accompany you to medical appointments. These are just a few examples. Your situation and needs will be very individual. However, taking your advocate to new medical appointments can be a good idea. It provides you with someone who can assist you in deciding if the physician is a good fit. Having someone with me for appointments has helped my poor memory on more than one occasion. Plus, if the appointment or hospital visit goes in an unsavory direction, you have a witness, and it is not just your word alone.
Now, on to professional patient advocates. They can also be called patient liaisons, representatives, case worker or any rendition of these. Usually though, if you ask for a patient advocate, you will be understood. The following quote is from study.com in an article titled “What is a patient advocate,” detailing the role for students who may want to enter this field of work.
“A patient advocate is a trained professional who serves as a go-between for patients and their family members and representatives of the healthcare industry. They can go by any number of titles, including health advocate, patient navigator, care coordinator, ombudsman, patient relations representative, customer service representative, patient liaison, consumer advocate or even crisis resolution representative.
Patient advocates can work to help patients and their families by providing a variety of services, depending on the patient's needs and the advocate's area of expertise. They may help them to secure health care, manage insurance, or make treatment plan decisions.
Services offered by advocates may include medical guidance. Advocates may review diagnoses, treatment options, tests, medications, and medical records and assist with decision making. Advocates might offer insurance or financial guidance. Specifically, they may assist with selecting appropriate insurance, navigating insurance rules, filing and managing insurance claims, and reviewing medical bills. They might offer legal or ethical advocacy. Advocates can provide guidance with matters such as living wills, advanced directives, disability or worker's compensation, and malpractice. Additionally, they might help with elder care. Some patient advocates even focus on the care of the elderly. They can locate services to assist with staying independent, find assisted living or nursing home care, or help individuals navigate Medicare (2017)." *
This next point is crucial. If you feel you have been given substandard care, contact someone! Calling the main hospital line or speaking with an office manager is a good place to start. Document everything, including the time and date, whom you spoke to and what was said. However, have reasonable expectations about the outcome. This is an extremely important reminder when advocating for yourself. Even if a doctor has treated you unfairly or given care that was less than stellar, do not expect him/her to be fired or reprimanded. You may not even find out the outcome. Some hospital systems have what they call “quality control panels” or “risk management committees” and when the complaint goes to those departments, they are not always required to disclose the outcome. They are only required to disclose that it has been reported and sent. Regardless, you stood up for yourself and your care, and that is an important point to remember! You also have the right to request amendments to your medical record. For many of us with Dysautonomia, we get diagnosed with all sorts of crazy things. There are also times that these misdiagnoses can impede our current care. If you have the medical information to back up amending your records, you can speak with your patient advocate about doing so. I am in the process of doing that myself.
What do you do if you feel your patient rights have been violated? This is beyond a rude and uncaring doctor. This may include discrimination, HIPPA violations or having your medical records withheld from you. We have all been offered the patient rights and responsibilities documentation when receiving medical care. I could wallpaper my house if I kept a copy every time it was handed to me. If you are confused or unsure as to what your rights are as a patient, take the time to read the HIPPA document. Being informed is a pillar of managing your own healthcare. If you feel your rights have been violated, you can submit a complaint to any State Medical Board. The American Medical Association has a list with the contact information for each State Medical Board. You also have the option of turning the complaint in to the Department of Health for your state.
When you are writing out a complaint against a doctor or medical establishment, be brief and selective. It is important to clearly state what the issue is without being emotional. Coloring your words with emotion is completely understandable as this IS your life we are talking about! But it will not serve you well.
Consider having your personal patient advocate assist you in writing and/or editing your complaint. State who or what you are complaining about and then the purpose of the letter. Briefly explain the issue that transpired and what you would like to see happen to resolve the problem. In the past, I have requested continuing education for one of my conditions. Finish by thanking them for their time, and sign, seal and deliver. A friend and an administrator in one of my support groups shared that she first gave the doctor’s office a copy of the complaint, in hopes of resolving it before turning it into the Board. This is most certainly an option, if you are comfortable with this tactic. If you chose to do this, taking your personal advocate with you might be a good idea. Also, keep triplicates of all letters and complaints submitted. Even if nothing comes of your complaint, it is documented and will hopefully help another patient with a similar complaint. If you have trouble discerning whether you should contact patient advocacy or the medical board, run it by a few well-versed fellow spoonies. Many of us have been in your shoes and know our way around the medical system.
I hope you will never need this information; however, given the nature of chronic illness, you may. I urge you to stand up for your healthcare in a productive manner and choose the best path for your situation.
*Utterback, S. (2017). What is a patient advocate? Retrieved from:
Editor's note: The subject of patient advocates was raised in Reanna's article "The Scary Trend I See in our Healthcare System" published in our partner publication, The Mighty.
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