Your PCP refers you to a specialist, let's say they are a headache specialist named Dr. H (for headache), to get help with your migraines that are common with your rare disease. Dr. H has no experience with your rare disease but is a headache specialist.
After seeing Dr. H, your PCP shares with you Dr. H decided that you don’t really have migraines and that you are a drug seeker.
We all know that our PCP’s are helpful when we have strep throat or need a referral to a specialist. But to be fully supported there are additional roles that are critical for your PCP to be engaged and willing to perform.
“Collaborative Partner - two or more parties engaged and working together on the same activity”
How many times have you brought up an issue only to have your PCP dismiss it and move on to their next item?
You are the main stakeholder in this...
As in so many areas of life, it is hard or often impossible to know 'what you don't know' or to recognize what hidden issues or dangers are out there.
When you are dealing with doctors and medical issues, what you don't know and the hidden dangers of staying with the wrong doctor can be disastrous and even life-threatening.
The effects of staying with 'a wrong doctor' can vary from mild frustration to long term effects on the quality of your healthcare.
Changing doctors isn't easy or for the faint of heart
I get it. Finding, meeting and working with a new doctor is a lot of work and can be scary too.
Let's take a closer look at some of the hidden dangers of staying with the wrong doctor.
When a doctor is dismissive or assumes the issues are from anxiety or depression, it can have a huge impact on you and your loved one's emotional and mental health.
How many of us have been told that it is anxiety? Or if you make them...
Have you heard about the new anaphylaxis management algorithm?
If you or someone you love has had anaphylaxis that required an epi-pen, it is likely that you were told to call 911 and immediately go to the ER for observation.
Last week, FARE updated their recommendations to include COVID-19 into the risk/benefit balance of monitoring at home vs. an ER visit. This is especially important in areas where ERs are swamped with COVID-19 patients although most ERs have new procedures to screen for COVID-19 when getting checked in along with a focus on minimized time spent with any patient to lessen risk of transmission.
As you can imagine, these new recommendations have caused a bit of controversy and concern in the food allergy and mast cell disease world.
Let’s take a closer look at the new recommendations and why they are being made.
Dr. Thomas B. Casale, the chief medical advisor for operations with FARE (Food Allery Research & Education) and...
Getting rare disease care has never been easy but with the coronavirus outbreak, it has become even harder. Clinics are closing, surgeries are being rescheduled and long-awaited appointments are being postponed.
Many of you may have had things canceled or postponed. As disappointing as this is, it is important to realize that this is being done to help our medical system handle the coronavirus outbreak from a logistic point while also trying to optimize your safety as well.
Your doctor, their clinic and/or hospital will be following recommendations by the CDC (Center for Disease Control) and ACS (American College of Surgeons) along with careful consideration of your specific medical case to decide what can and should be rescheduled.
Our doctors were struggling to survive in a broken medical system before but now they are entering the totally unchartered territory of providing medical care during a pandemic. The medical system...
Depending on where you live, how much you follow the news and your general personality type, you may or may not be concerned about COVID-19. Panicking doesn't help anyone but being prepared may help and certainly won't hurt.
There are a lot of general recommendations out there but here are several specific ways that you can prepare as a rare disease patient.
If you have been seen at a teaching hospital you have likely been seen by a medical student or resident prior to seeing the (attending) doctor. They meet with you first and their job is to take your history and present it to the doctor. Sometimes it goes well but too often it ends up a bit like a game of telephone where your original message is distorted and garbled when it gets to the doctor.
Let's look at one aspect of what is going on here and why things sometimes go awry.
Have you ever thought about the process or framework a doctor uses to get information from you in an interview? Did you know that they are all taught this framework, the medical interview, in medical school and they continue to use it throughout their career?
You’ve probably heard the advice that you should write down questions for your doctor before an appointment but that is usually not enough when you are dealing with a rare or complex disease. Did you know that doctors are taught a ‘medical interview’ that they use as the framework of your appointment? By approaching your appointment like you would a job interview, you can learn how to better communicate and collaborate with your doctor, resulting in a stronger relationship and better care for you.
Let’s look at the way an appointment or ‘medical interview’ is similar to a job interview.
Our medical system has changed a lot over the last 20 years, especially for the doctors working in the system.
Intuitively and through our own experiences, we can see that doctors are struggling with the changes including high levels of burnout, frustration and even an increased rate of suicide.
So, what is it that is causing the doctors’ struggles?
Based on a 2018 survey, doctors reported their top two least satisfying factors about medical practice as listed below.
EHR design/interoperability 39.2%
Regulatory/insurance requirements 37.6%
Loss of clinical autonomy 37.0%
Professional liability/malpractice 30.2%
Amount of time with patients 12.4%
If you have been in the rare disease world for any length of time, you have likely heard of a rare disease expert who has closed their practice, retired from patient care, been pushed out of a larger organization, or opened a private pay clinic.
Experts like Dr. Korson dealing with mitochondrial disease, Dr. Afrin working with mast cell diseases, Dr. Boris and Dr. Schofield focusing on autonomic issues like POTS, and many others, have left leaving even more patients without appropriate or even adequate care.
The sad part is that it is rarely the doctor's choice to step back from rare disease patient care. Often, the rare disease doctor’s practice is seen as too risky, too controversial, not productive enough because of long appointments and high resource needs, or not financially lucrative.
Why does this keep happening and what can we do to help our rare disease experts help us get the care we need?
Let’s start by looking at the reasons our rare disease...