David Tuller: Trial By Error: Kaiser Permanente Changes Course

used_to_race

Senior Member
Messages
151
Likes
233
Location
Southern California
When I first became ill almost 3 years ago, I had Kaiser Permanente insurance here in SoCal through my job. I saw a couple infectious disease doctors who didn't provide me with any guidance as far as treatment or symptom management. I remember having a follow-up with the second of these two doctors over the phone. She called me in the morning as I was driving into work, feeling terrible as usual and dreading the walk from my car into the office to try and get some work done for the day. It's hard to admit as a 20-something year old guy who used to be a collegiate athlete, but when all she told me was to see a psychiatrist and work on my "sleep hygiene", I cried in my car because I knew that this wasn't going to fix any of my problems. I just felt hopeless. Switching to my employer's better insurance plan allowed me to see many of the top doctors in LA, some of whom were also terrible, but I found a rheumatologist who has been utterly amazing. Under his care I have improved a bit and actually have things to look forward to about life. Hopefully these changes to Kaiser Permanente will allow people like me to have more options when terrible things like this happen to people like us. I think right now, the ideal scenario is to have well-trained clinicians in many specialties who are connected to a network of GP and infectious disease doctors who can refer new PWME out to each specialty to get full workups and trial some medications to control symptoms. Not necessarily big, risky treatments either - LDN, beta blockers, Florinef, Plaquenil, and other safe, cheap drugs have helped a significant number of us with symptoms quite a bit. This would be more than an incremental improvement to healthcare for PWME and it wouldn't require any research breakthroughs at all.
 

Countrygirl

Senior Member
Messages
4,363
Likes
22,059
Location
UK
http://www.virology.ws/2019/03/11/trial-by-error-kaiser-permanente-changes-course/
Trial By Error: Kaiser Permanente Changes Course
11 MARCH 2019
By David Tuller, DrPH
Over the years, I’ve slammed U.S. medical and health care institutions that have championed the GET/CBT treatment paradigm for the illness or cluster of illnesses variously known as ME, CFS, ME/CFS or CFS/ME. I have done this both before and after the U.S. Centers for Disease Control and Prevention removed its own recommendations for the two therapies in the summer of 2017.
These institutions have included Kaiser Permanente. For years, its public website about the illness included information about CBT and GET. (This material was actually created not by Kaiser Permanente but by an organization called Healthwise, which provides online clinical information services.) I also heard that it was hard to find doctors within the Kaiser Permanente system who understood the illness and could provide appropriate disease and symptom management.
Jeff Schwartz, 56, is a Kaiser Permanente patient in San Francisco who has struggled with the illness for decades. Given what he found to be inadequate treatment, he wanted Kaiser Permanente to refer him to and pay for an unaffiliated specialist. This request was refused, and Schwartz paid himself for outside medical care. He also began pushing for changes within the system. Luckily, his efforts ended up linking him with Dr Steve Olson, a Kaiser Permanente family physician in Santa Rosa.
We want physicians to understand the current diagnostic guidelines. We will encourage them to treat symptoms and any co-morbid conditions, to prevent harm by trying to prevent flare-ups of post-exertional malaise, to teach patients how to keep within their individual energy envelope. I can’t stand to think of a patient coming in to see a doctor here and not being recognized as having what they have. I think with making these changes, we can also spread this to the rest of medicine. This is not just a Kaiser Permanente member thing.
 

pogoman

Senior Member
Messages
225
Likes
233
Glad to see KP is starting to modernize their diagnostic approach.
Been a member of planet KP for almost 3 decades, I've run into their conservative mindset many times.

I found out from my neurologist in December that he was retiring and my new replacement doctor would be a neuro-muscular specialist.
He starts next month so I am hopeful for more aggressive treatment.
 

Webdog

Senior Member
Messages
1,196
Likes
3,828
Location
Planet 9 via Interplanetary Overlay Network
Another excellent David Tuller article about Kaiser Permanente and ME/CFS.

Reeducating Doctors About ME/CFS
http://www.berkeleywellness.com/hea...olicy/article/reeducating-doctors-about-mecfs
David Tuller said:
What specifically is Kaiser Permanente doing to change its approach to patients who have symptoms of ME/CFS?

I got recommendations from colleagues who were a little further along in their understanding of the illness, and patients would also send me information. Next month [April 2019] we are providing physician education via a live region-wide video conference. This will be offered to all of our physician colleagues, and heavily promoted especially to Family Medicine, Cardiology, Pulmonology, Neurology, and other specialties that can help manage associated symptoms of ME/CFS.

In addition, we’re working with our regional physician education department to develop a plan to educate them through grand rounds, a training module, and so on. A diagnosis and management guide aligned with current CDC recommendations will also soon be available to all providers in the system on our internal online clinical library. I’ve created a job aid for clinicians that’s a summary of that longer document. It’s one page—what you need to know, with links. That’s the basic information I want to get to every physician in relevant disciplines.
 

pogoman

Senior Member
Messages
225
Likes
233
For the SoCal Kaiser members that read this thread (NorCal KP is a separate altho related organization), Kaiser has a Metabolic Disease Clinic in LA that treats genetic diseases along with other rare types.
It does require referral but bugging your doctor for one is easy to do.
From personal experience they are very knowledgable.

https://thrive.kaiserpermanente.org...a/genetics/babies-children/specialty-clinics/