ANN DODDThe Dr Dorothea Sandars Churchill Fellowship to study and experience innovative care models, including best practice specialist nursing services for people living with parkinsonism, including Parkinson's Disease - UK, Netherlands, Sweden
I work in a Specialist Nursing role for the Neurological Support Service, within the Tasmanian Health Organisation, North-West. My role is both challenging and rewarding and primarily provides individualised support to those living with Parkinson’s disease, which is complex, chronic and progressive. Tasmania has the highest density of Parkinson’s per population in Australia and is a leading model for nurses working within the community. My background includes 29 years of nursing experience in acute, community, aged care, disability, palliative care, and education and I hold a Bachelor of Nursing and post graduate qualifications. On a personal level I have recently retired from surf boat rowing where I have been involved for competing interstate during the past decade, first aid and beach patrol. I have two beautiful adult children, and live with my husband Jamie, and our Labrador dog, Molly.
The Dr Dorothea Sandars Churchill Fellowship to study and experience innovative care models, including best practice specialist nursing services for people living with parkinsonism, including Parkinson’s Disease – UK, Netherlands, Sweden, May/June 2014
FELLOWSHIP CONCLUSIONS & OUTCOMES
It was a privilege to be awarded a Churchill Fellowship and even more pleasing that studying nursing service models in London and the Netherlands has raised the awareness of people living with Parkinson’s disease and the people who care for them. It has highlighted the complexity, individuality and burden of the disease and need for innovative services in Tasmania. The fellowship also enabled attendance at the 18th International Congress for Parkinson’s disease, in Stockholm, Sweden.
Some of the highlights were from the Netherlands where I was warmly welcomed, and included into the Western Dutch Parkinson’s disease nursing network. Linking into nurse led clinics, observing real time hospital electronic health records with medication alert systems (including medications to avoid for people who live with Parkinson’s) and observing Deep Brain Stimulation surgery were valuable experiences.
I was able to gain an understanding of the Dutch ‘ParkinsonNet’ program where specialist guidelines and curriculum for training programs are developed to assist with clinical practice and education of both generalist and specialist health care professionals. The program identifies, and more importantly, links specialist health care professionals via a web based program for connectedness and collegial support where they are able to share resources. As my role is based in the community, in a rural remote Tasmanian region, with limited access to Specialist support, this web based program was particularly one of envy.
In addition, people with Parkinson’s, as well as health care professionals, can also access a web-based portal and search engine for treatment options and to find a Specialised Professional within their community. Interestingly, the quality assurance processes include transparency and people with Parkinson’s are able to give written feedback on their experience with a specialized Health Care Professional, and this is available to others via the web.
In the UK it is estimated about 127,000 live with Parkinson’s and they have approximately 250 expert Parkinson’s Nurses, whereas in the Netherland there are about 50,000 with 90 Specialist Parkinson’s Nurses. I comparison Australia estimates are 84,000 with 35-40 nurses. Numbers are expected to double over the next few decades, and best practice involves referral to a Parkinson’s Nurse within 6 weeks from diagnosis as well as enabling a point of contact throughout the entire disease trajectory. Research demonstrates that Nurse Specialists increase productivity by reducing unplanned admissions, length of stay in hospitals, readmissions and consultant appointments. Tasmanian resources need to be increased, scope of nursing practice increased, and strategies adopted for connecting and transparency of health care professionals, particularly in rural/remote areas where access to Medical Specialists is limited. In addition, innovative value based programs, including self-management, will now be facilitated within the region, to assist those living with Parkinson’s to navigate their health journey.