The first Move for Change online survey determined whether the first two points of the 1997 Charter
– that PwPs “be referred to a doctor with a special interest in Parkinson’s” and that they “receive an accurate diagnosis” – are being met across Europe. The survey went live in April 2010 and closed at the end of October the same year.Consistent findings across the 35 countries surveyed revealed that:
- only a minority of patients were actually referred to a Parkinson’s expert (12%) for their diagnosis
- the diagnosis of the disease can take more than two years – despite clinical guidelines recommending that patients should be referred to a specialist for an accurate diagnosis within six weeks
- the information people receive at the time of diagnosis is not well matched to their needs
- nearly half of the people with Parkinson’s were dissatisfied with the way their diagnosis was conveyed. Many felt that they were treated abruptly or impersonally. The poorest scores were given when the diagnosis was handled by a neurologist or hospital doctor, and the best scores were given when dealing with a family doctor.
If you are interested in going into much more detail about these survey results, click on the links on the right. Of particular interest is the peer-reviewed article published in the European Journal of Neurology
. The article was written by two high-profile Parkinson's specialists, Professor Bastiaan Bloem and Professor Fabrizio Stocchi.