Dear WHOever - to all decision makers concerned.

01/01/2021

Subject: Our petition 'Vestibular for change' - Change. Org "How worldwide disclosure of a clear guideline/protocol can turn a lack of in-depth understanding of balance disorders today into early diagnostic evaluation and effective management of vestibular disorders tomorrow."

Dear decision makers, 

In 1979, the World Health Organization (WHO) called for the best available scientific evidence to be used in decisions about health care interventions. 

Today Evidence Based Practice (EBP) is internationally accepted as an indispensable pillar in the pursuit of quality patient care. It therefore deserves a structural framework that gives care providers the opportunity to incorporate the use of EBP into their daily practice. It also needs commitment and investment to make the use of EBP "evident" in the ten primary care professions that the EBP network currently focuses on, and to give patients better access to high-quality information tailored to their needs.

But what's in it for vestibular patients today?

I am writing to you in my capacity as 

  • president of House4balance (2019-2021) 
  • initiator of the petition 'Vestibular for change' on Change.org (2016) 
  • author of the book Dizzy Me. Light on balance (2010-2021) - coauthored by prof. dr. Floris Wuyts 
  • ex patient with vestibular disorder (1993 - 2008). 

My name is Tania Stadsbader. I live in Belgium, Europe. I am 50 years old, ex patient & a patient representative who campaigns on international scale on behalf of people with vestibular and neurovestibular conditions. 

When I was a patient (23-38 years old and mother of 3), It took me 15 years and 7 'expert opinions' before I found my cure.

Among the known human senses, balance is often overlooked. and can also be overlooked in medicine. 

This inspired me and my fellow sufferers to start: • an international petition on behalf of doctors and patients: 'Vestibular for change' on Change.org (2016).

The aims of both the petition and Foundation are very simple, but will unfortunately stay out of reach without the help of WHO and your organisation: to reduce the time it takes to get an accurate diagnosis, to avoid wastage through misdiagnosis and to ensure that treatment plans are appropriate. 

We attracted +6500 signatures from around the world from healthcare practitioners, researchers, patients and family members. It was signed by many medical educators working in the field of balance/motion sensation conditions. We had the support of Lucien Engelen, champion of the 'patients included' movement and Transform.Health. His comment was re-tweeted by the late Rosamund Snow, one of the patient editors at the BMJ. -

Hereby our petition letter, the signatures of +6500 people, and the comments of health care practioners. Many patients reported long delays in diagnosis and misdiagnosis and their wish for doctors to be empowered to help them.

We are very grateful to patient associations for supporting this petition and to everyone who has signed and shared it. 

We are aware of the great work of patient-centric organisations working in the field of balance and if your organisation is able to foster further advances, it will be to the benefit of science, doctors and patients everywhere. And we would be very grateful. 

All best wishes, 

Tania Stadsbader 

On behalf of the petition (e-patient) team.
Verony, Richard, Liesbet, Polly, Beth, Tamar, Kim, David, Tania