Awareness MAP Grows 22 States! Keep it coming! This little map AFFECTS CHANGE! Legislators realize there is unity and attention nationwide. Even sending in a letter, even if you missed your states deadline - we can post your state! It is quick and easy. Info I listed on the PN website.
PN FACEBOOK POSTED THIS OUTRAGEOUS SPEECH (Sept. 7) BY DR. DON GILBERT SAYING PANDAS DOES NOT EXIST. WRITE A COMPLAINT.

PLEASE HELP US STOP HIS ABILITY TO SPREAD THIS TOXIC MESSAGE.

Collectively, we have heard and share the frustration around the recent Grand Rounds at CCHMC by Dr. Donald Gilbert. We want you to know there are three action steps you can take outlined below. Our gratitude goes out to the collaborative work of Jessica Gowen with SEPPA, Sarah Signe Lemley with NWPPN, and Heather Korbmacher with PN. 

 Additionally, we want you to know that the nonprofits are collaborating to ensure that further damage is not done at the AAP conference next month. Specifically, both SEPPA and PPN will be present formally, providing accurate information about PANDAS/PANS/AE as well as rebuttal talking points to Gilbert's presentation. There may be more action to take..."behind-the-scene" conversations are taking place, so stay tuned.

Thank you for your continued advocacy. Indeed, we will make a difference for our children!

CALL TO ACTION 
If you have been a patient of Dr. Don Gilbert at CCH and did not receive adequate care for your child OR you are concerned about his recent grand rounds presentation, you may file a complaint through any or all of these three options: (1) CME complaint (Continuing Medical Education, serves to maintain, develop or increase the knowledge, skills, and professional performance and relationships that a physician uses to provide services for patients, the public, or the profession. 
(2) Provider complaint with the State Medical Board of Ohio. (3) Report a patient safety event with the Joint Commission. 

Directions for each follow. You may consider using the talking points listed at the bottom of this post. 

CME COMPLAINT

Directions:
1) Follow the CME link above and scroll down to enter the required fields which are your name, mailing address and name of accredited provider (Donald Gilbert)
2) Include Activity Location as Cincinnati Children's Hospital
3) Check Criterion 5
4) Use our bullet points below and your personal story in the description of the concern 
5) Include the following in the conclusion: Furthermore, Dr. Gilbert’s presentation appears to be in violation of CME STANDARD 5: Content and Format without Commercial Bias 5.1 The content or format of a CME activity or its related materials must promote improvements or quality in healthcare and not a specific proprietary business interest of a commercial interest. 5.2 Presentations must give a balanced view of therapeutic options. Use of generic names will contribute to this impartiality. If the CME educational material or content includes trade names, where available trade names from several companies should be used, not just trade names from a single company.
6) Click Submit

PROVIDER COMPLAINT

Directions: 
1) Follow the link above and select Click Here to File a Complaint
2) Select Medical Board
3) Fill out personal information
4) Complaint Against: Select Individual
5) Enter Donald Gilbert
6) License Type: Select Doctor of Medicine (MD)
7) License Number: 35.074483
8) Phone Number: 513-636-4222
9) Email Address: donald.gilbert@cchmc.org
10) Description: If you have a personal experience, provide as much detail as possible and attach documents if appropriate. 
11) Click Submit Complaints

REPORT A PATIENT SAFETY EVENT

Directions:
1) Follow the link above and select Submit a new patient safety event or concern
2) State: Ohio
3) City: Cincinnati
4) Organization: Cincinnati Children's Hospital Medical Center
5) I am: Select whichever is most appropriate, probably Other/Not Stated
6) Complete personal information
7) Incident Information date is 8/28/18
8) Click Submit

Consider the following talking points: 

I am filing a formal complaint after viewing Cincinnati Children's Hospital Online Pediatric Grand Rounds (MOC eligible 8/28/18) presented by Dr. Donald Gilbert, PANDAS and PANS – A Practical Guide to Acute Neuropsychiatric Symptoms. Following are my concerns: 
Dr. Gilbert begins with three learning targets: Participants will be able to:
(1) Implement an appropriate diagnostic strategy.
(2) Utilize and/or refer children appropriately for evidence-based treatment.
(3) Counsel families appropriately and provide anticipatory guidance. 
He then utilizes his platform to discredit the work done by other doctors researching and treating children with PANDAS/PANS/AE, ending with “There are no tests, treat like any other psychiatric illness, and inoculate the family with education so they do not seek out a PANDAS/PANS clinic.” It appears to me that he is both defaming other doctors and misrepresenting his presentation.

Furthermore, the statement, "inoculate the family with education so they do not seek out a PANDAS/PANS clinic" seems to violate the AMA Code of Medical Ethics Opinion 1.2.3 "Physician's fiduciary obligation to promote patients' best interests and welfare can include consulting other physicians for advice or referring patients to other professionals." https://www.ama-assn.org/delivering-care/consultation-referral-second-opinions . Considering that PANDAS/PANS is a form of Autoimmune Encephalitis, Dr. Gilbert's recommendations for treatment, which consist of only what NOT to do until severe, appear to go against the AEAlliance treatment guidelines which state that "early and aggressive treatment … leads to the best outcomes." https://aealliance.org/patient-support/treatment/

It is my conclusion that Dr. Gilbert is using this platform to provide misguided advice to front line providers, advice that has the potential for serious medical malpractice. I ask that this be investigated and Dr. Gilbert be instructed to cease and desist in these actions, that the presentation be taken down, and that any other appropriate actions be taken.