My PD Journey, an unprecedented multi-stakeholder initiative led by the European Parkinson’s Disease Association (EPDA), gathered last week with high-level EU officials and stakeholders from across Europe to discuss ways to drive positive progress for people with Parkinson’s disease.
At the breakfast workshop, hosted by MEP Mairead McGuinness, representatives of My PD Journey presented the results of the initiative’s first major research project – the European inventory – which assesses and compares different care pathways for Parkinson’s across Europe and seeks out national examples of good practice that could be replicated in other regions. Lead Clinician of the research Dr Anette Schrag from the European Section of the International Parkinson and Movement and Disorder Society (MDS-ES) commented:
“The results of our research1, which included a survey and in-depth interviews across 11 European countries, could not be clearer: there are still many barriers to the effective diagnosis, treatment and care of Parkinson’s disease in Europe. Patients do not receive all the information they need, and very often miss access to specialised and integrated treatment and care. This is absolutely essential for the effective management of their disease, as Parkinson’s affects each and every person differently, requiring coordinated and specialised care.”
The research confirms that in many cases, patients do not have access to appropriately trained healthcare professionals and are not referred to specialists within the recommended guideline of six months. Compounding the problem is a lack of communication between primary and secondary healthcare providers – a significant hurdle to consistent, regular and cohesive care plans for people with Parkinson’s. Commenting on the findings, President of the EPDA Knut-Johan Onarheim said:
“The situation is far from improving, with the number of people with Parkinson’s predicted to double to more than 2.4 million by 2030 as a result of an ageing population. The challenges we face are having a dramatic impact not only on people living disease, but also on their families, carers and the economy at large. The cost of the disease is substantial, currently estimated at €13.9 billion annually and forecast to grow as the number of people living with the disease rises. Today’s findings offer yet more evidence that a policy response is urgently needed at all levels if we are to advance positive progress for people living with Parkinson’s in Europe.”
My PD Journey also presented a number of policy recommendations to address the challenges facing those living with the disease. In particular, EU and national government officials were urged to continue supporting and funding projects that facilitate timely and optimal diagnosis and treatment, to promote the development of reference networks that improve access to diagnosis and the delivery of high-quality, accessible care, and to focus on the establishment of disease registries across Europe.
Speaking on behalf of the European Parliament, host MEP Mairead McGuinness stated:
“There is no doubt that Parkinson’s disease is a priority health challenge in Europe, and the EU is continuously seeking to identify and support new ways to address the policy gaps at a European and national level. Stakeholder-led initiatives such as My PD Journey can have a hugely positive impact in addressing the challenges we face today, particularly by driving forward groundbreaking research and presenting practical solutions for the effective treatment and care of Parkinson’s at all stages of the disease.”
Building on the results and recommendations of the European Inventory, My PD Journey is now focused on driving forward collaboration between policymakers and key stakeholders at a national level across Europe. A number of these national coalitions have already begun addressing some of the barriers identified in the research. In November 2015, My PD Journey will host a second Brussels event to present further results and analysis from the European research, and outline what the national coalitions have done to begin working on some of the recommendations presented today.
For further information about My PD Journey, please click here, and to sign the EPDA’s Pledge for Parkinson’s, please click here.
- The primary research included a survey and in-depth interviews across 11 European countries with people with Parkinson’s, their carers and healthcare professionals. The countries were Denmark, France, Germany, Hungary, Ireland, Italy, the Netherlands, Slovenia, Spain, Sweden, and the UK, with a total of 1,776 and 194 stakeholders taking part in the survey and interviews, respectively.
About Parkinson’s disease
Parkinson’s is a progressive, chronic and complex neurodegenerative disease that has no cure. It affects all aspects of daily living and is one of the most common neurodegenerative diseases. The effects of Parkinson’s invariably involve the physical, cognitive and psychological domains, and impact across nearly every cultural, social and economic boundary.
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My PD Journey