BSGVesD makes it happen
On Thursday evening, November 28 2019, the (multidisciplinary) Belgian Study Group on Vestibular Disorders (BSGVesD) met for the first time at the Royal Academy of Science and Art in Brussels. Their mission was to write an overarching guideline to support the diagnosis and treatment of vertigo and dizziness, based on the latest scientific findings and the Barany Society criteria for all those different balance disorders.
A team of vertigo experts from various disciplines, doctors who come into contact with vertigo, such as neurologists, ENT consultants, ophthalmologists, general practitioners, physiotherapists, audiologists, but also scientists and myself, an ex-patient and founder of House4balance, because I have been pushing for this for years.
After this first meeting, it is clear that they are happy to participate in this story today.
A guideline. Is that still necessary?
And for whom?
A guideline for our general practitioner as first line intervention - have a look at these astonishing facts & figures about dizziness in the GP office.
But this also goes for the emergency services, who are often the ones to examine this type of patient first; misdiagnosis at the A&E department for peripheral balance disorders is estimated at 74 to 81%.
In fact, it is also relevant to any ENT doctor who does not have vestibulology as a specialism, but nevertheless encounters dizzy patients.
The team behind the flying start
Yesterday these experts joined around the table for the first time:
- Floris Wuyts (Vestibular expert, Head of LEIA, UA & St Augustine Antwerp)
- Christian Desloovere (Otology, Otoneurology, Vestibulology, UZ Leuven)
- Alionka Bostan (Neurology, Neuro-Ophthalmology UVC Brugmann Brussels)
- Daniele De Siati (Audiology, Otology, Vestibulology, UCL Louvain)
- Leen Maes (Audiology & Rehabilitation Sciences, UGent & responsible VIS-Flanders project)
- Robby Vanspauwen (Vestibular Clinical Scientist, Head of Audiology, St Augustine Antwerp)
- Valerie Wiener (Audiology, Otology, Chirec Brussels)
- Tania Stadsbader (House4balance, ex-patient & only expert by experience)
Where to start? And where will we end up?
When projecting the current guideline on EBM Practicenet, mouths fell open with surprise. Not knowing whether to laugh or to cry? A waste of time! Instead, we need to act with urgency, it is imperative.
Such a protocol won't, however, be simple. It's not easy to design it perfectly applicable to every specialism and at the same time make it usable and understandable for first line medical aid. Because if you group balance and dizziness, instability and light-headedness under one all-embracing umbrella, you involve a lot of other syndromes and disciplines (purely neurological, cardiovascular, endocrinological, and so on ...). And a number of very acute disorders, which are more life-threatening than the balance disorder that we are talking about as vestibularpatients ... like a brain tumor or a brain haemorrhage.
It reminds me of my own old slogan, from before I started House4Balance: "smart doctors for better patient care".
Nonetheless, we all agreed fairly quickly on the principles, methodology and steps needed, including on the way in which that SMART guideline should be put into words intelligibly and clearly, without inhibiting GP's. To draft it in such a way that our doctors will really want to - and will be able to - use it. This is the only way we can successfully correct the inadequate fundament, which today often leads to misdiagnosis and a prolonged transition towards correct diagnosis and treatment.
It reminds me of my own old slogan, before I started House4Balance: "smart doctors for better patient care". What I also wanted to express at the time - and still today - is that our doctors do not all have to be experts down to the smallest details, but that they must be given the foundations and tools to be able to correctly do the initial categorising themselves, in order to treat the simple cases themselves, decrease misdiagnosis, and refer the more complex patients and tests to the right specialists. They in turn will have more space for this if the first line aid was already able to take some meaningful steps. And we haven't yet touched on what this could mean for the afflicted families and the costs to society. It is what I have been trying to explain with all my might, for years. This is precisely what will sustainably advance all of us. A win / win for everyone!
But then ... the support
There was another thing that struck me last night: everybody across the board reached the same conclusions as myself concerning conducting the work and producing a meaningful result. A base of support is the significant factor here that can make or break this work and the protocol. Without a base for support from the doctors themselves and the whole community, without platforms to distribute knowledge, even the most fantastic guideline will remain a dead letter.
We need networks and ambassadors to communicate and endorse that combined work and this protocol.
And that should happen on both sides, from doctors and patients. So join us and occupy every chair still vacant in this virtual room in which we strive for change. And instead of chairs in rows, I dream of chairs in the round. Because that is where the power and the potential for change lie. Just like the work of House4balance only makes sense when people put the things we offer to concrete and visible use. Our own website already runs in 6 languages. For the time being, the amount of work we do is disproportionate to the dialogue with and empowerment of our followers. We'll try to accept that - wait, I mean: we'll keep hammering that nail - and in the meantime we continue with our limited resources and renewed energy, because someone has to do it, but many hands make light work.
Do not wait too long in regard to this initiative; some appreciation is owed to the people who are taking a chance and donating their time to address our needs in the coming months. I am immensely grateful for their efforts and commitment!
A welcome extra
The attending experts also agreed on the need for exchange of knowledge and cooperation. Because in the margins of the meeting, participants surprised one another with useful tools and shared best practices on differential diagnosis & decision making. Like the most recent insights into the treatment of specific diseases such as Vestibular Paroxysmia. Which in turn led to the intention to collaborate on this with all the hospitals represented at the table.
And so people enhanced one another's practice.
Early March a first draft will be there and the team of experts will have grown even further. I will present those names next time.