What doctors & experts say: LAST CALL petition

12/14/2020
Before we say goodbye, we need to finish this beautiful work!
Before we say goodbye, we need to finish this beautiful work!

Before we say goodbye as a Foundation and cheers to you all, we need to finish this beautiful work...

This is your last opportunity to add your power.
Sign, share, comment. We will deliver the results of this petition for you to WHO on January 1, 2021. Our letter is ready to send!

Since launching the petition for change, we attracted 6442 signatures from around the world from health-care practitioners, researchers, patients and family members.

It was signed by many medical educators working in the field of balance/motion sensation conditions

We even had the support of Lucien Engelen, champion of the 'patients included' movement and the man behind Transform.Health. His call to support our petition for change was re-tweeted by Rosamund Snow when she was one of the patient editors of BMJ.

The voices of doctors, therapists & experts 

  • Lucien Engelen, #PatientsIncluded Movement & Transform.Health, Herkenbosch, The Netherlands, Europe

"Creating more awareness of this and training in basic curricula should be encouraged. The patient powered initiative deserves widely RT-ed support, so please follow me in doing so !"

  • Ria Varner, Texas, USA

"As a vestibular physical therapist, it is frustrating when I have patients that come to me for treatment after YEARS of searching, or that only come because the symptoms have caused them to fall down and sustain a broken bone, or worse, a brain injury. Not ok, not appropriate, not ethical on the part of the medical community."

  • Jean-Philippe Guyot, Genève, Switzerland, Europe

"As chairman of the University ENT Department in Geneva, I am aware of the deficit in teaching vestibular disorders to young doctors."

  • Wendy Welsch, Evanston, Illinois, USA

"I am global product manager for balance for Otometrics. While I am fortunate enough to work with the best in the vestibular world, the best are not the majority. We work hard to train physicians, clinicians and technicians but this is after they start seeing patients. Education needs to be improved and begin before the first patient is seen."

  • Firat Kesgin, Hamburg, Germany, Europe

"I am the founder of German institute for vestibular rehabilitation (ivrt.de). We are travelling all over Germany to educate German physiotherapist, so that patients with vertigo receive a better care from specialised PT's. In Germany the situation for this patient group is awful and needs to change quickly. And yes, also and especially in Germany we need better doctors!"

  • Mark Tesoro, Analyst/Educator at Lee Memorial Trauma Center,
    Fort Myers, Florida, USA

"I see the injuries related to vestibular conditions and the burden it places on trauma centers."

  • Joni Redlich, Hillsborough Township, New Jersey, USA

"It took me 10 years to find an appropriate treatment and it could have just as easily never have been found. I am a physical therapist with a lot of knowledge on the topic and can't imagine navigating this dizzy world without my medical background."

  • Eric Vente, UtermöhlenStichting, The Netherlands, Europe

"Field sobriety tests are a battery of tests used by police officers to determine if a person suspected of impaired driving is intoxicated with alcohol or drugs. the Walk and Turn Test, or WAT Test, requires the suspect to walk from heel-to-toe on a line. This test measures the balance. Many unilateral Ménière's disease patients in the "interface" after 3 month from the last attack have a propriocepsis and the orientation impairment but still can drive safely. In fact 80% healthy people fail to do well. Cognitive neurology can explain this. Dizzy Me brings patients and scientists together. As a doctor with 30 years of experience treating vertigo and great interest in therapeutic possibilities for those with compromised oculo-vestibular systems and visual vertigo, I'm looking forward eagerly to the English edition of the book. It will acquaint people around the world with a more 'balanced' approach to the vestibular system."

  • Melinda Aisbett, Perth, Australia

"I am owner of Best Balance Physiotherapy and treat people with Vestibular Disorders. Often people have put up with their symptoms for too long when there is effective, evidence based treatment available."

  • Melissa Glass, Cape Coral, Florida, USA

"I'm a physical therapist who treats vestibular disorders and is frustrated with lack of support or misdiagnosing from doctors. This is a huge problem everywhere and too many patients are suffering."

  • Taryn Glynn, Cape Coral, Florida, USA

"I'm signing because I am a Physical Therapist with a specialization in Vestibular Rehab. I see patients on a weekly basis who do not have an accurate diagnosis, making it very difficult for me to educate my patient and provide them with the most beneficial treatment. Many patients aren't receiving appropriate medical treatment in SW Florida for vestibular-related conditions."

The voices of doctors, therapists & experts

  • Rebecca Downey, Fort Myers, Florida, USA
  • "As a vestibular PT, I find my patients have struggled with whatever their symptoms are for YEARS before they finally see me. Many doctors that refer know actually very little about vestibular disorders/treatment."

  • Marie Nathalie Grondin, North Fort Myers, Florida, USA

"As a balance and vestibular therapist, I witness the devastation and despair of patients who had a long and winding road filled with obstacles, unmet hopes and needless suffering due to a fragmented ineffective approach to complaints of balance and dizziness. In times of constant search for ways to save money in health care expenses, it behoves me that we have not yet developed a more efficient way to help patients who suffer from balance, dizziness and vertigo problems. I wish to be part of the team that finds solutions. It saddens me to hear how many times patients utter the words "you are my last hope". People who seek out our help and guidance should feel hopeful that we will accompany them in finding a solution and improve their quality of life. Please help by signing this petition."

  • Brianne Carter, Fort Myers, Florida, USA

"As a physical therapist, I see the devastating effects of undiagnosed or mismanaged balance problems, including disability, falls, and death."

  • Jennifer Magas, Fort Myers, Florida, USA

"I am a vestibular certified therapist. I see too many people that have had to go to multiple doctors and therapists before getting to the root cause and proper treatment."

  • Catherine Hennaux, Mons, Belgium, Europe

"Je suis médecin ORL. La question du vertige figure parmi les 4 plaintes les plus fréquentes aux urgences: la complexité de l'analyse de cette plainte nécessite une connaissance profonde de l'oto-neurologie au même titre que des disciplines classiques - cardiologie, neurologie et imagerie médicale - permet d'aider rapidement et efficacement au diagnostic afin d'éviter les errance voir erreurs diagnostiques."

  • Magdalene Boorazanes , Brookfield, Illinois, USA

"I am an audiologist who has seen first-hand why this is so important."

  • Danise Miller, Brainerd, Maine, USA

"As a neuro-rehab optometrist, I know how vision contributes to the vestibular system. Many, many patients are needlessly struggling. The time is now; educating doctors across disciplines is essential!"

  • Alberto Zoebisch, Mexico, South America

"Soy Médico que se especializa en trastornos vestibulares y se de la falta de atención para estos pacientes por médicos de primer contacto y otras especialidades médicas."

  • Paul Bergamo, Boronia, Victoria, Australia

"I am one of a few of a handful of chiropractors in Australia with post graduate neuroscience vestibular training, who sees vestibular cases and agree on the premise of diagnosis attainment is paramount to precede correct management"

  • Clare Shearer, Poole, UK

"As a vestibular physiotherapist I have enjoyed seeing patients recover with correct diagnosis and treatment. We need more expertise in this field and improved multidisciplinary working."

  • Razan ALFAKIR , Jacksonville, Florida, USA

"I am signing this petition because I am a otolaryngologist and researcher with Aud and PhD degree in audiovestibular science and disorders that is aware of the gaps in knowledge. I highly support the purpose of this petition."

  • Kelly Masterson, Laurel, MD

"I am a physical therapist who treats patients with vestibular dysfunctions and see the need for increased awareness on the issue for both the community and healthcare providers."

  • Julien Goyard Ruel, Montreal, Canada

"Je suis optométriste. On sous-estime les possibilités thérapeutiques reliées à la neuro-plasticité du système de l'équilibre."

PS

  • We also received messages from patients who used information in the petition in their consultations, especially SO STONED of Wuyts for differential diagnosis, which proved helpful to them and their consultants.
  • We realised that there are likely to be many patients who never got a diagnosis but might be able to now, due to improvements in testing equipment and clinical knowledge, and most of all... if only a helicopter guideline & training would be secured by WHO on a worldwide scale.