The EPDA’s Move for Change campaign is the largest online European patient survey on standards of care in Parkinson’s to date. The survey was designed to identify any areas of care falling short of the standards set by the EPDA’s Charter for People with Parkinson’s and current clinical guidelines.
The results of the survey are available in a number of formats throughout this section of the website, but a great place to start is to download the booklet on the right (simply click on the image to download).
The booklet contains the key European results, which have been presented in easy-to-understand infographics. This is because we believe it is essential to communicate quickly and simply the survey’s core findings – that people with Parkinson’s are not receiving the standards of care that disease specialists recognise as being best practice.
Within the booklet, two eminent Parkinson’s specialists argue that the Move for Change data can assist healthcare professionals and policymakers in improving the level of care for people with Parkinson’s and their families across Europe. We agree with them. If you do too, then we would love to hear from you, and urge you to spread the word about the need for change.
The Move for Change campaign at a glance Background and purpose:
The EPDA launched its Charter for People with Parkinson’s disease in 1997. This document – backed by the World Health Organisation – outlined five basic principles that have been widely agreed to be fundamental rights for people with Parkinson’s. It states that all patients have the right to:
- be referred to a doctor with a special interest in Parkinson’s
- receive an accurate diagnosis
- have access to support services
- receive continuous care
- take part in managing their illness.
The Move for Change campaign consisted of three pan-European patient surveys
that evaluated whether these standards of care were being met. Methods:
The three online surveys consisted of 51 questions relating to the Charter’s principles. They were available via the EPDA’s website and its affiliated patient associations’ websites across Europe from 2010 to 2013.
5,366 questionnaires were analysed from people with Parkinson’s and their carers in 35 countries. Conclusions:
The data highlights certain challenges that people with Parkinson’s still face surrounding living with their condition, despite the introduction of the EPDA Charter in 1997. These findings can assist healthcare professionals and policymakers in improving the level of care for people with Parkinson’s and their families across Europe.