Tuesday, August 4, 2020

Front Line Doctors are Hidden Doctors

Why is Stella Immanuel very, very important?

I can only share with you my very personal thoughts about Stella Immanuel and the Front Line Doctors.  I won’t discuss the content of what they are promoting, but instead, the fact that they have been given a platform to share what they believe.  And that they are practicing “medicine” in a community that serves people like anyone reading this now.

If what they say upsets you than think about this; they may have been promoting their beliefs and medical services for years to people who are not aware of what is correct or not correct when it comes to medical care.

For over 20 years I have been saying that when we, members of the public, (whether we work in healthcare or not), become patients, what happens behind the “curtain” of a doctor’s care is private and rarely discussed with others.

Not knowing if a doctor is giving appropriate, helpful information is crucial to continuing patterns of substandard care.  In our TakeCHARGE Ambassador training with young people this past week, a girl shared that her doctor was treating her with care that did not improve her condition.  When she spoke with others who had this same condition, she became empowered to change doctors. How many people believe they are doomed to a life of pain or a deadly disease because their beloved, trusted doctor doesn’t know what cures are available?  In the case of Stella Immanuel, for how long has she been able to make people believe what she has said is true, because they don’t know anything different?  After all, she is a doctor and shouldn’t she know best?

The fact is, until we all start talking about patient care and what to expect when we are with our doctors, they are free to spew misinformation or treat our family members inappropriately, incorrectly or even just wrongly.  But health care is not like driving a car. We learn to drive with practice and with a test and know when someone is not driving correctly.

We are all taught the rules of the road.  When we walk into a doctor’s care we are at the mercy of their advice and treatment.

I started working with young people in 2006 when two sisters called their doctor “creepy” during a patient empowerment presentation. Since then we learned about the Olympic gymnasts and what they suffered at the hands of their doctor.  My research has found that the Olympic gymnasts case was not an isolated case. 

You may say that this is not possible, but when someone doesn’t know what an exam is supposed to be like, it gives clinicians an opportunity to make up the rules as they go along.

Starting in 2010 I began working with some people from the transgender community and again was able to learn that the details of medical care and experiences were not being shared.  When we opened up the conversation, we learned that many exams and plans of care were different.  Whether or not there are standards of care the patients do not know what they are.

The Pulse Patient Activationthrough Community Conversations (PACC) was designed for this reason: so people can share what has worked for them.  This is not about giving advice, or what may be seen as medical information or a diagnosis.  A PACC is designed to discuss what has worked for you or me, or to find out what has worked for others.  When participants who realize they are getting inappropriate or unhelpful care, they then become empowered to change clinicians or at least ask for what they want.

I may hear that your medication worked for you when we have the same or a similar diagnosis, and can now go back to my doctor and ask if I should try that medication.  Some doctors may be grateful that you brought this information to their attention and for those who are not, it may help to decide if this is a doctor you want to continue to see.

I wonder how Dr. Immanuel would react if her patient did not want to be treated with the medication she was suggesting, that many feel is not appropriate.  A doctor not willing to listen or partner is a doctor I am not willing to continue seeing. But if I were to call her “crazy”, wouldn’t I be just as guilty — of diagnosing someone when I do not have a license to do so? If I said that suggesting her way of doing things is “wrong”, am I now giving medical advice, which is not appropriate for me to do?

As a patient’s advocate, part of my role is to support a patient’s decisions and if I can’t support what someone wants to do for their care or treatment, I should not be their advocate. 

I’m not suggesting you go to medical school, but I am suggesting we start discussing our care through PACC’s so we know what has worked, or not worked for others.