The following day there was an EFNA board meeting. Orla Galvin, EFNA Executive Director, presented the preliminary results of the survey on assessing diagnosis and care pathways of people living with neurological disorders in Europe. Over 1000 participants from 23 different countries participated in the survey. Some of the results show that:
- 32% of people have not been given the opportunity to speak to their doctor about treatment satisfaction or to make adjustments to treatment and for those who were, 35% felt they were not taken seriously.
- 42% of people felt they had to justify their first visit to their doctor.
- 55% of people say the response of the doctor or healthcare professional did not meet their expectations.
- Long time to diagnosis – 20% waited for 4 years and more.
This survey shows similar results as the dystonia survey of Prof Maja Relja in 2019 and also the recent dystonia patient journey. The above findings will be used to increase awareness among HCPs and decision makers.
Staff at EFNA from left: Elizabeth Cunningham, Tadeusz Hawrot and Orla Galvin
Photo: Monika Benson, Executive Director, Dystonia Europe and Russell Patten, Director General, EPDA (European Parkinson’s Disease Association)
Monika Benson, EFNA Vice President