In this paper, we present a universal model for implementing network care for persons living with chronic diseases, specifically those with rare movement disorders. Building on our longstanding experience with ParkinsonNet, an integrated care network for persons living with Parkinson's disease or a form of atypical parkinsonism, we provide a series of generic, supportive building blocks to (re)design comparable care networks. We discuss the specific challenges related to rare movement disorders and how these challenges can inform a tailored implementation strategy, using the basic building blocks to offer practical guidance. Lastly, we identify three main priorities to facilitate network development for these rare diseases. These include the clustering of different types of rare movement disorders at the network level, the implementation of supportive technology, and the development of interdisciplinary guidelines.

Introduction Living a life with Parkinson's Disease (PD) is a challenge for both patients and spouses. Patients have to cope with an increasing limitation in all domains of their daily life and spouses need to adjust to these changes. The focus of this study is on exploring, both quantitatively and qualitatively, the psychosocial needs of both patients with PD and spouses. Methods An online survey with 11 themes, related to dealing with a chronic disease, was sent by an email to patients and spouses and two focus groups were planned, one with patients and one with spouses. Data from the survey were quantitatively analysed and audiotapes from the focus groups were transcribed verbatim and combined with notes. Results Percentages of relevance are higher than 50% for all the themes, whereas those of the need for and received support are all lower than 50%. Focus groups revealed a negative image of psychosocial therapy and associations with failure, but also difficulties in signalling problems by professionals, little attention for spouses and limited access to specialized psychosocial care. Conclusion Based on this exploration, there appears to be a threshold to ask for psychosocial support on the one hand and to find the right professional on the other hand. A permanent position for psychosocial health professionals in the multidisciplinary Parkinson teams and networks may close the gap between ‘supply and demand’.

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