The European Parkinson’s Disease Association (EPDA) has called for ambitious action to address the challenges of Parkinson’s disease in Europe including the poor access to healthcare professionals with a speciality in Parkinson's disease.
Describing the gravity of the situation as part of Parkinson’s Awareness Month, President of the EPDA Knut-Johan Onarheim commented: “Next year, 2017, marks the 200 years’ anniversary of the discovery of Parkinson’s disease, and yet we have no cure. More than that, we face significant hurdles to effective diagnosis, treatment and care, including a profound lack of information and education and poor access to healthcare professionals with a speciality in Parkinson’s. We are also missing an individualised approach to disease management in most European countries, which is critical as the disease is so complex and requires a multi-disciplinary team at all stages”.
The latest figures show that there are over 1.2 million people living with Parkinson’s in Europe today, a number that is forecast to double by 2030 as a result of our ageing population. Those living with the disease can wait up to five years for an accurate diagnosis even though guidelines recommend a maximum wait of six months.
Once diagnosed, people require medication for the rest of their lives, which can lose its effectiveness over time and induces unpleasant side effects. They live with well-known motor symptoms such as tremorand postural instability, but also non-motor symptoms such as sleep disturbances, pain, depression and hallucinations.
Speaking about what needs to be done at an EU level, Mr Onarheim said: “It is very encouraging that European policymakers recognise the dire situation we are in, and are supportive of our and others’ efforts to drive improvements for people living with Parkinson’s and their families. More can be done, however, and we hope that our ongoing and constructive dialogue will deliver real outcomes for Parkinson’s in the short and long term. We are notably working with the EU institutions to improve data collection efforts, which would give us a much more accurate picture of Parkinson’s today, and build EU support for multi-stakeholder projects like our own ‘My PD Journey’” Mr Onarheim continued.
The EPDA is also taking concerted action to drive change at a European, national, and regional and local level. It is currently focused on further raising political awareness of Parkinson’s as a priority health challenge and fundraising through its ‘100 Challenge’, which runs until the end of 2016 and to which stakeholders of all backgrounds and interests can get involved (see here for more details).