Understanding the Role of Parkinson’s Disease Nurse Specialists in Providing Personalized Care for Individuals with Parkinson’s and Their Families

Abstract

Purpose: Parkinson's Disease Nurse Specialists(PDNS) play a vital role in delivering personalized care to individuals affected by Parkinson's disease(PD) and their families. This paper explores the multifaceted responsibilities of PDNS in managing and providing comprehensive care for the unique needs of PD patients. Additionally, it delves deeper into the specialized qualifications and training opportunities available for PDNS, with a particular focus on the United Kingdom's National Health Service(NHS).
 Method: A systematic review of literature and publications from reputable sources, including PubMed, The Lancet, Parkinson's Europe, and Parkinson's UK, has been conducted to gather pertinent information and insights regarding the crucial role of PDNS in enhancing the quality of life for PD patients. It also includes reviewing the latest PDNS learning pathway guidelines and the EU’s PD care manifesto.
 Results: A growing number of PD patients and families face communication difficulties with healthcare professionals, particularly consultants. There is a lack of awareness about the disease and its symptoms, which results in delayed diagnosis and inconsistent care plans. During consultations, there is a mismatch between the information provided and the information desired. Publications emphasize the critical roles of PDNS in the delivery of personalized care plans, emphasizing the importance of effective patient-provider communication for optimal plans.
 Conclusion: Effective communication and understanding of PD patients' and their family members' circumstances and emotional well-being contribute to informed care plans. PDNS play diverse roles in providing comprehensive patient and family support. They serve as primary contacts, walking alongside patients in their PD journey. It is vital for PDNS to cultivate a trusted relationship and receive ongoing support to enhance their skills. Government and charities hold critical roles in raising awareness and creating learning opportunities for PDNS and healthcare professionals. Research shows low shared decision-making in European PD care plans, leading to treatment inconsistencies. The European Union recognizes the importance of funding further research, stressing knowledge sharing for well-informed and standardized care plans, benefiting PD patients and families.