Contributed by Gwyn M. Vernon, MSN, CRNP and Lisette Bunting-Perry, PhD, RN
This article includes some content based on the preface to "Comprehensive Nursing Care for Parkinson's disease" (Springer, 2007) written by Lisette Bunting-Perry and Gwyn M. Vernon. As nurse professionals, the authors have had the opportunity to be an integral part of interdisciplinary teams serving people with Parkinson's disease (PD) and related movement disorders. They share over 50 years of experience as movement disorder nurse experts. In collaboration with colleagues, the book disseminates collective clinical knowledge on caring for those with PD and their families.
The international specialty of PD and movement disorder nurse specialists is still in its early years. Our practice internationally is influenced by our respective health care systems, local health care policies and the organizational structure of individual clinical practices. Scientific discoveries most often are shared internationally influencing practices, yet not all available treatments are available across country boundaries. Despite some of these differences, our shared nursing vision, training, and passion for our field brings us together as colleagues.
An opportunity presented for an international gathering of movement disorder nurses at the 1st World Parkinson Congress held in Washington, DC in 2006. PD and movement disorder nurse specialists from the United Kingdom (UK), Israel, Sweden, Netherlands, Canada, Australia and the United States (US) joined together to evaluate our mission, goals and vision for the future of movement disorder nursing. During the course of the evening, we considered these questions: (1) What has been our history? (2) What are our roles? (3) Whom do we serve? (4) What is our vision of the future of our profession, where are we going?
What has been the history of movement disorder nursing?
Movement disorder nursing has evolved over the past 25 years. Undeniably, the UK has an excellent plan for training and utilizing the specialty. Mary Baker, M.B.E., President of the European Parkinson's Disease Association and Linda Caie, Parkinson Disease Nurse Specialist in Scotland are familiar with the work it took to build partnerships with physicians and to evaluate the "economic evidence" to support the role of the nurse in PD interdisciplinary care. Funding in the UK for PD Nurse Specialists is through public (governmental) and private partnerships, including the pharmaceutical industry. This model of care puts nurses where the patients are - at home, in the clinic, hospital or nursing home. Each nurse has a panel of patients to follow. The model includes prescriptive authority, skill validation by core competencies, completion of didactic and clinical practice education and certification. In 2010, the UK Parkinson Disease Society estimated that 66% of people with PD in the UK have access to one of the 270 PD nurse specialists. The flexibility and usefulness of this role globally was clearly demonstrated by the additional establishment of a service in Australia, where PD patients in remote western Australia have had the same model of care since 1998.
In the US, movement disorder nurses were the first to form a special focus group within the American Association of Neuroscience Nurses (AANN) in 1989, paving the way for the development of many special focus groups which have developed over the years. Limited in scope, the movement disorder nurses' special focus group facilitates educational symposia to non-PD nurses at the annual American Association of Neuroscience Nurses' conference, providing a mechanism for introducing the sub-specialty to nurses in neurology and neurosurgery. The group also provides a forum for networking and sharing of resources and information as to align nurse specialists to collaborate on projects, publications and research.
Most of the movement disorder nurse specialists with decades of experience in the US came into their role when funding was made available from 2 non-profits beginning in the early 1980's. The American Parkinson Disease Association (APDA) and the National Parkinson Foundation (NPF) have funded Parkinson's Disease Information and Referral Centers and Centers of Excellence since the 1980's. Additionally, in 2001, the United States Congress allocated funding for six Parkinson Disease Research, Education and Clinical Centers (PADRECCs) within the Department of Veterans Affairs. This funding promoted the development of additional "centers of excellence" housed within Veterans Administration Medical Centers affiliated with large University based Medical Centers world class movement disorder centers. Nursing is central to the model of patient care delivery in each PADRECC.
In the US, there is no certification for PD or movement disorder nurse specialists. Advanced practice nurses with a graduate degree in nursing may be certified by examination by the American Nurses' Credentialing Center and experienced neuroscience nurses may be certified by examination through the American Board of Neuroscience Nurses, however, these examinations are not focused nor limited in scope to Parkinson's disease and related movement disorders.
What is the role(s) of Parkinson's disease and Movement Disorder Nurses?
First and foremost, all movement disorder nurses care for patients and their families. Internationally, the role is diverse, and often a nurse plays a multitude of roles. Movement disorder nurses may function as: center coordinator or manager, clinical nurse, case manager, outreach community nurse, research coordinator, member of a neurosurgery team or deep brain stimulator programmer, educator, advocate, and patient and family educator or counselor. Many movement disorder nurses function in several roles on any given day to meet the needs of patients and families and to promote excellence of care and scientific research. All PD and movement disorder nurses function and work closely with multiple disciplines, including physicians, therapists, genetic counselors, psychiatrists, nutritionists, social workers and the community.
Movement disorder nurses contribute to research and the literature. While these projects are too numerous to describe here, three should be mentioned as excellent role models for movement disorder nursing. Janet Doherty researched the symptom profile in western Australia of patients with Parkinson's disease. Julie Carter has contributed extensively to the research and literature illuminating caregiver burden in relationship to patient disease stage. Lisette Bunting-Perry researched and has brought to the forefront the role of pain in Parkinson's disease and the concepts of Palliative Care. Nursing research such as these examples is respected by many diverse professional disciplines advancing our care of these patients and their families.
Movement disorder nurses are collaborators. A new frontier was established in 2010 through the leadership of Eli Pollard and Robin Elliott of the Parkinson's Disease Foundation (PDF). Joining with the American Parkinson Disease Association and the National Parkinson Foundation, PDF brought PD nurse leaders to New York to develop a webinar entitled "Parkinson Disease Across the Lifespan: Roadmap for Nurses". This novel program offering CEUs and available 24 hours a day has reached over 2000 nurses in all parts of the world promoting standards of care for patients and their families.
Whom do movement disorder nurses serve?
First and foremost movement disorder nurses serve patients and their families who suffer from Parkinson's disease and other movement disorders such as dystonia, tremor, tics, Tourette, Huntington's disease, Progressive Supranuclear Palsy, tardive syndromes and multi-system atrophies. Many of the patients served live in developed nations where advanced medical care and fiscal resources are a reality. The majority are adults and older adults. As the population ages, we will witness a dramatic increase in the prevalence of Parkinson's disease. Older adults have high rates of co-morbidities which further challenges and expands the role of the nurse to manage the interplay of several chronic conditions. At this point, not much is known or recognized regarding the patient care needs and nursing care in countries which are not as developed.
Movement disorders also serve in other areas. For example, in the UK, the PD Nurse Specialists serve in the capacity of a governmental employee. Many serve on research projects in the role of principle investigator, sub-investigator or coordinator. Most serve as resources and educators for other nurses in their communities and Universities, as well as for the public. Many hold, or have held, board positions on non-profit organizations which serve our patients. Movement disorders nurses may collaborate with industry in developing patient literature or new products.
What is the vision of the future of Parkinson's disease and Movement Disorder Nurses?
Our future will undoubtedly be shaped by the needs of patients and families served, scientific developments, nursing research, economies, and technological advances. One thing evident now, is the small number of movement disorder nurses in the world (estimated to be 500), far too few to care for the patient population. In the current field, we are primarily middle aged women who are not very culturally diverse. Therefore, we must generate enthusiasm for our work and share our passion with the next generation of nursing professionals from all cultures, to assure a future in which those with Parkinson's disease and related movement disorders have access to expert nursing care across their lifespan of disease.
The 2nd World Congress in Scotland, 2010, provided an opportunity to revisit and assess the vision and future of movement disorder nurses. Many issues have been identified including: a need to continue to examine models of care in various centers and locations, an enthusiasm to work collectively and internationally to promote our nursing passion, acknowledgement of the lack of movement disorder nurses especially in underserved locations and nations, and a need to advocate for new therapies across country borders. There is also recognition of the need to preserve the role that is unique and distinct to nursing, a threat due to the multitude of roles movement disorder nurses have taken over the past 20 years. Additionally, movement disorder nurses need to find mechanisms to prove their cost effectiveness in patient care and to share our model and passion with other nurses serving chronic conditions.
Our work is still beginning. We are committed to work collectively and internationally, and to foster and support the development of capable nurses to care for the patients and their families suffering from movement disorders. We will continue to explore models of care, build teams, share work, and expand on the past. Our future will be a busy one, and one filled with new challenges and rewards as we see the care given patients improve, expand, and help those who suffer.
References, Links, and Resources
Bunting-Perry, L., Vernon, GM (2007). Comprehensive Nursing Care for Parkinson's disease. New York, Springer Publishers.
Parkinson Disease Nurse Specialist Core Competencies
More Websites
World Parkinson Congress (www.worldpdcongress.org/)
APDA (www.apdaparkinson.org/)
National Parkinson Foundation (www.parkinson.org/)
Parkinson's Disease Foundation (www.pdf.org/)
European Parkinson Disease Association (www.epda.eu.com/)
PADRECC (www.med.upenn.edu/padrecc/)
AANN (www.aann.org/)
ANCC (www.nursecredentialing.org)
Parkinson's Disease Across the Lifespan: Roadmap for Nurses (http://support.pdf.org/nursing)