Narcolepsy UK chairman Matt O’Neill reports on what was a fruitful trip to Germany for European Narcolepsy Day.
This year Germany was the host for the Sixth European Narcolepsy Day. The EU-NN (European Narcolepsy Network) organised this day together with the German Narcolepsy Association (DNG) and Prof Young and his team from the Department of Sleep and Neuromuscular Disorders of the University of Münster.
This is a very important meeting in our annual calendar and I came away feeling much more engaged and involved, thanks to all of the awareness raising we have done in the UK and particularly with colleagues from Sweden, Ireland and Norway. With 90 participants from 15 national patient groups attending, and sessions chaired by both clinicians and patients, it felt like we are now really gaining some momentum.
Results from a prospective database of the European Narcolepsy Network were presented but I believe they do not show an accurate picture of narcolepsy diagnosis or treatment in the UK as the sample data was too small. I have agreed to support the database and will work with our European colleagues and sleep centres in the UK to provide more data to help provide a more realistic picture.
The 15 narcolepsy associations presented information about free access to narcolepsy medications in their countries and I was able to present our petition on Change.org and called for each national group to share it with their members on our behalf.
I think I have always made it clear where we fully support anyone with narcolepsy and it was wonderful to be able to present at the end of the conference as part of a discussion on reimbursement of patients suffering from narcolepsy after H1N1 vaccination. This issue differs widely across countries both in terms of impact and even recognition. I believe that the work we did in Germany helped to close the gap between some patients with sporadic and secondary narcolepsy that was caused by this issue. A consensus was reached which made it clear that patients with both forms must stand up together for their rights and needs.
We ended the meeting with each patient group agreeing to send one member as a representative for a task force that will meet regularly to plan action at national and European level.