Challenges for patient organisations: focus on Europe

The challenges facing patient organisations in Europe are unique only in part, but that part is both critical and daunting. The core problem involves what “Europe” is and is not. It is a collection of nation states. It is not a nation. Consequently, people are “Europeans” after they are Danish, German, French, or whatever their nationality, and their healthcare and policy is National (with a deliberate capital), not European. Their access to treatment differs with their nationality. Where they exist, their patient organisations are National, not European.

At the European level, there is need for dialogue to inform the decisions of policy makers and to use patients as a resource to define societal and service needs. Organisations such as the European Parkinson’s Disease Association (EPDA), the European Federation of Neurological Societies, and the European Brain Council have an important role in initiating and sustaining a dialogue between medical science and society to improve the quality of life of patients and families living with Parkinson’s disease (PD) and other brain diseases. The mission of these organisations is to educate Members of the European Parliament and European Commissioners about diseases of the brain and their impact not only on patients, but also on the workplace and society.

To achieve this end, there must be a united voice, and this requires both horizontal and vertical alliances and integration as illustrated below (fig 1). It is crucial that there is a consistent message that reflects the needs of patients and focuses attention on how those needs as well as those of society generally can best be met with the resources available.