What is the Consensus Statement?
The EPDA’s European Parkinson’s Disease Standards of Care Consensus Statement defines in plain language what the optimal management of Parkinson’s should be.
This unique statement – agreed after many months of discussion and debate by a great number of high-profile experts in the field of Parkinson’s, people with Parkinson’s and EPDA’s member organisations - has been developed because there is currently no such European consensus on Parkinson’s management – and no overall definition of what good quality care should consist of.
Why is a Consensus Statement needed?
Due to the motor and non-motor aspects of the disease, hospitalisation and healthcare utilisation rates are high with respect to Parkinson’s, and the economic burden of the disease can be seen in both direct and indirect costs: for example, consultations, tests and investigations, reduced working hours, and institutionalisation. In 2006, the prevalence in Europe was estimated at 1.2 million people and this figure is forecast to double by 2030, primarily as a result of the ageing population. Early intervention, however, has been shown to reduce the economic burden, currently estimated at €13.9 billion, to both the individual and to society. An effective consensus statement will provide a convincing case for policymakers to strive for that earlier intervention enabling people to remain in the workplace for longer.
The importance of the EPDA’s Move for Change campaign
The origins of the Consensus Statement began shortly after the launch of the EPDA’s Move for Change campaign, which began in April 2010. The three-year, three-part pan-European online survey asks PwPs whether their lives have improved since the launch of the Charter for PwPs in 1997, and each year it focuses on one or two specific points of the charter where participants can answer honestly. It was soon realised that the data collected as a result of this online survey – much of it anecdotal and never compiled in written form before – would provide compelling evidence that would support a consensus statement, and further reinforce the argument that if Parkinson’s is treated early and properly, then there will be less cost to society and, most importantly, PWPs’ quality of life will be improved.
Who developed the Consensus Statement?
A 24-strong team – consisting of key European neurologists and physicians with a special interest in Parkinson’s, PwPs, carers, and representatives from the multidisciplinary team (physio, occupational, speech and language therapists) – helped the EPDA develop the Consensus Statement.
What happens next?
The next stage will involve representatives from the EPDA officially presenting the Consensus Statement to Members of the European Parliament in the European Parliament in Brussels in November. It will represent the EPDA’s first formal meeting with European policymakers to raise the profile of Parkinson’s within the European political arena. Following this event, the EPDA plans to deliver the Consensus Statement to healthcare professionals at the Movement Disorder Society congress in Dublin, Ireland, in June 2012. It is hoped that with the support from these essential stakeholders, Parkinson’s will steadily move up the European policy agenda.
