The EPDA’s Move for Change campaign is the largest European patient survey on standards of care in Parkinson’s to date. The surveys were 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 demonstrate that people with Parkinson’s fundamental rights have been adapted only partially throughout Europe in the last 10 to 20 years, and that various unmet needs have been identified.
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.
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.
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.