The story of a six-year campaign by Port Macquarie Parkinson’s Support Group to obtain a specialist Neurological Nurse-Educator for our region, by Gregg Faulkner.
About 300 people in the Greater Port Macquarie region are living with Parkinson’s Disease. These people are dependent upon specialist Neurologists to maintain the best possible quality – and duration – of life. But, there is no Neurological Specialist in this region.
Parkinson’s Disease (PD) is a progressively debilitating condition caused by failure of a small cluster of cells in the brain. These cells normally produce a chemical called Dopamine, which enables nerve cells to communicate their signals around the body. Without enough Dopamine, communication between nerve cells becomes erratic, and many symptoms develop.
People living with Parkinson’s may experience symptoms including disturbed sleep, muscular weakness, tremor and “pill-rolling” finger movements, shuffling gait, speech difficulties and many other diverse malfunctions. The condition becomes worse over time, and the person may succumb to complications like pneumonia or failure of critical nerves (such as heart controls).
Parkinson’s cannot be cured, but most symptoms can be reduced, and disease progress slowed, by carefully selected and dosage-controlled medication. Diagnosis of Parkinson’s and prescribing of the most suitable medication for an individual is a job for a Neurological Specialist.
Problem! We don’t have a Neurologist in Port Macquarie. We’ve been told that the reason is because the partners of Neurological Specialists prefer to live in the more culturally endowed major cities, rather than wilderness outposts like Port Macquarie. Truth or fiction, the fact remains that the nearest Neurological Specialists are located in Newcastle or Sydney – a very inconvenient distance when fine-tuning medications may require frequent consultations.
Twenty-two years ago, a handful of people got together and formed the Port Macquarie Parkinson’s Support Group. Comprised of people living with PD and their partners or carers, the Support Group was established with the aim of providing mutual support and care for members. Early members learned the value of sharing their experiences, fears and feelings. One of the biggest issues with PD is the feeling of isolation and loneliness. It is so darned hard to explain all the weird symptoms to people who have never experienced them. But, within the Support Group, people DID understand!
Because PD is usually, though not always, diagnosed in people in their 50s and 60s, and because Greater Port Macquarie has a higher than usual concentration of that age group – due to sea-changers and retirees – this region has an unusually high number of Parkos, and still no Neurologist.
So, more than six years ago, the Port Macquarie Parkinson’s Support Group began lobbying for appointment of a specialist Neurological Nurse for this region. We reasoned that a specialist nurse would provide a valuable intermediary between the “scarce as hens’ teeth” Neurologists and the large number of Parkos (our term for people living with PD) in this region.
We use the term Parkos as a convenient and ice-breaking shorthand alternative to the clumsy term “people living with Parkinson’s Disease”. And please, for goodness’ sake, don’t ever call us “Parkinson’s sufferers” or “people suffering from Parkinson’s”. We shudder at the thought and, let’s face it, we shudder enough already!
With the strong support of our NSW Government local member, Leslie Williams MP, the very active Support Group, which has now grown to more than 110 members, has lobbied energetically for appointment of “our nurse”. While we waited for the wheels of politics and bureaucracy to grind in our direction, we commenced collecting funds for the purpose of enhancing the working environment of “our nurse”. Our reasoning was that if we demonstrated our commitment to the nurse and helped to enhance his or her conditions and professional development opportunities, they would be more likely to remain, to support us in the longer term.
The role we saw for the nurse is two-fold. First priority is to provide immediate support and advice for our region’s Parkos – and their carers – and to provide a link between us and Neurological specialists in the cities. The second, and almost equally important role is to communicate with and educate the region’s medical professionals on the peculiar needs of Parkos, and the special treatment and arrangements we need at times.
For example, several commonly used anaesthetics can be lethal for someone using PD medication. Highly undesirable! Additionally, Parkos require their medication at specific schedules, with occasional personal variations. We learn to judge when we need our medication, and we are generally very skilled at managing our own medication. So, it is vital that Parkos in hospital be provided our medication when we need it, not necessarily at the hospital’s routine medication times. A specialist nurse can explain our needs in “doctor talk” and make life easier all around.
In addition, the nurse can work across all the health-related disciplines on which we Parkos rely – Physiotherapists, Neurologists, Gastro-enterologists, Social Workers, Psychologists, and even providers of assistive technologies and mobility aids – to share better understanding of our disease and its treatment.
Recently, our entreaties were answered. Six and a half years after starting our campaign, we have been informed that a Specialist Neurological Nurse-Educator has been appointed to the region. We have been very fortunate to obtain the services of a very highly qualified Neurological Nurse-Educator with extensive experience in both clinical and educational roles at St. Vincent’s Hospital, Darlinghurst and the University of Technology, Sydney.
Rachael Mackinnon RN Masters (Neuroscience), B.A., Cert IV TAA, NVRN-BC, Parkinson’s Clinical Nurse Consultant has now commenced work in the Mid North Coast Health Region. Rachael’s position is jointly funded by Mid North Coast Local Health District and Parkinson’s NSW.
We have been very fortunate in securing the appointment of an excellent Nurse-Educator. Now the Support Group will work with her to find the most effective ways to provide for the needs of the large number of people living with PD and related neurological conditions in this region. Trials with similarly skilled nurses in the Shoalhaven and Coffs Harbour regions have demonstrated the huge benefits – in terms of improved quality of life and efficacy of treatment, and in significantly reduced hospital admissions – attributable to the nurse. Vince Carroll, a similarly qualified Nurse in the Coffs Harbour area, has been practicing for two years and now has around 500 people on “his books”.
We look forward to similar benefits in this region, and, who knows? With the presence of a supportive specialist nurse in this region, we might even be able to attract a Neurological Specialist to locate here. Wouldn’t that be nice!
It is only fair to recognise the effort made on our behalf by Leslie Williams MP. As a qualified nurse, Leslie has understood our situation and has worked tirelessly toward this outcome. Thanks Leslie!
Gregg Faulkner is currently President of Port Macquarie Parkinson’s Support Group, a
dynamic and growing organisation with well over 100 members. Gregg was diagnosed with PD seven years ago. Contact details for Port Macquarie Parkinson’s Support Group are available on their website: www.parkinsonspmq.org.au
Rachael Mackinnon RN can be contacted by referral from your GP. Further information can be obtained from the Parkinson’s NSW Infoline: 1800 644 189.