Wednesday, 17 November 2010
Parliamentary Friends of Parkinson’s
It is probably the first and only time! I, along with the member for Gilmore, Joanna Gash, convene the Parliamentary Friends of Parkinson’s. At our last meeting the parliamentary friends had the pleasure of meeting Dr Simon Lewis, Director of the Parkinson’s Disease Research Clinic at the Brain and Mind Research Institute at the University of Sydney, and Sister Marilia Pereira, a nurse specialist in clinical neurophysiology. We received an overview of what is called the Shoalhaven project. I want to share with you a few short facts about Parkinson’s before I talk about the Shoalhaven project.
Parkinson’s is a chronic, progressive, incurable, complex and disabling neurological condition that manifests when nerve cells in the brain die, leading to a shortage of dopamine. The condition can affect everything from physical movement and speech to an individual’s mood and mental health. Sufferers usually experience serious disabilities, including tremors—trembling in the hands, arms, legs, jaw and face—rigidity and stiffness of the limbs and trunk, sudden slowness and loss of spontaneous movement, and impaired balance and coordination.
Recent research suggests that sufferers of Parkinson’s disease are also more likely to develop dementia. Despite being the most common neuromuscular disorder in Australia, Parkinson’s is also the least understood in terms of its cause and management. There are around 80,000 Australians living with Parkinson’s disease and a further 25 are diagnosed with the disease every day. Contrary to commonly held assumptions about Parkinson’s being a disease which affects older Australians, the reality is that nearly one in five Parkinson’s sufferers is of working age. Four thousand people who are under 40 are currently living with the disease.
Despite the prevalence of Parkinson’s in the population, a 2007 Access Economics report revealed that 90 per cent of GPs in Australia need additional training ‘in the diagnosis and management of Parkinson’s and other neurological conditions’. The lack of awareness of the early symptoms of Parkinson’s often thwarts early diagnosis, and a typical diagnosis in Australia may take up to two years—even more, depending on what symptoms become apparent.
Treatment and management of the condition become more difficult the more the disease progresses. Parkinson’s sufferers living in rural and regional communities are at a further disadvantage when attempting to access the already limited treatment, often having to travel enormous distances just for consultations.
Whilst we hope that ongoing research into gene therapy and new drug technology may one day reverse the disease pathology or at least thwart its progression, it is clear that we need to improve existing treatment options and to promote awareness of Parkinson’s. We know that reports have revealed that Parkinson’s disease costs Australians over $6 billion per annum. Researchers and advocacy groups argue that the best response to Parkinson’s is to establish early intervention measures based on effective health interventions which will improve quality of life, slow any disability, reduce growth rate in the future costs of Parkinson’s and allow sufferers to continue to be productive in the workplace.
Dr Simon Lewis has argued that, to curb the escalating costs of the illness and its prevalence in Australia’s ageing population, we need to implement a community nursing model. This model, Dr Lewis argues, is particularly important in addressing the needs of rural and regional communities who have little to no access to any specialist medical assistance for neurological conditions but will also be of enormous benefit across our health system. In the community nursing model, specialist neurological nurse educators are deployed across Australia to substitute for some of the specialist care. The nurses contribute to the better management of treatment and, through information and referrals, reduce the impact of symptoms and therefore hospital and aged-care admissions relating to neurological conditions.
To progress the community nursing model, Parkinson’s Australia and Dr Lewis at the Brain and Mind Research Institute secured a federal government grant from the Department of Health and Ageing to launch the Shoalhaven pilot project. The team received a grant of $220,000 to establish a community nursing pilot project in the Shoalhaven region on the New South Wales South Coast. To further assist the project, Bendigo Bank donated a car and the associated travel costs for the specialist nurse to drive around in for the duration of the project. The Shoalhaven pilot project commenced in January 2010 and will run for two years, finishing in January 2012. The pilot project embeds a nurse specialising in neurodegenerative conditions in the Shoalhaven region in New South Wales. That community nurse works with local doctors and healthcare professionals to gauge the impact of Parkinson’s disease on the local community.
Sister Marilia Pereira is the nurse specialist in clinical neurophysiology assigned to the project, based in the Nowra Community Health Centre on the New South Wales South Coast. Sister Pereira engages with patients by phone, internet, through the clinic and also through home visits. Her role is to treat the symptoms of the disease and also help alleviate the financial burden for those living with Parkinson’s and motor neurone disease, their carers, families and the community as a whole. Sister Pereira’s presence has already proven to be invaluable to the people in Shoalhaven living with Parkinson’s, and some sufferers are commuting from outside the region to access her support. In the past few months, Marilia has conducted 81 baseline assessments and 27 follow-up assessments; covered 13,796 kilometres; taken 1,562 calls; and responded to over 1,500 emails. This translates to over 220 hours with patients directly and the equivalent of 5.4 full days on the phone, to put it into context.
The feedback from the community and the data collected to date show improvements in the quality of life for patients and carers in health service provision and a reduction in the socioeconomic costs of the illness. The community response has been overwhelming. Stephen Dennett, a patient in New South Wales, said:
Our Parkinson’s community nurse is now an indispensable part of my ongoing care and support. Particularly as my disease progresses, I need more and more support from medical professionals.
Having a local community nurse who specialises in Parkinson’s disease allows me to access home based practical medical care without having to wait months to see a neurologist.
She (Marilia) clearly explains treatments and care to me and has often performed tests on me at home that normally require me to travel several hours to Sydney to have completed.
... Marilia substantially improves the quality of medical care and support that I need during this very debilitating disease. I congratulate those who have made it possible for the Shoalhaven to have a community nurse dedicated to Parkinson’s patients and I fully endorse the further expansion of this very valuable programme.
The project is based on a cost-neutral model, with no recorded increase in patients’ healthcare costs despite including the specialist nurse salary in the project. John Silk OAM, President, Parkinson’s New South Wales, said:
The Shoalhaven trial is showing every indication in its preliminary figures that Neurological nurses in rural and remote regions will achieve two major objectives:
1) The cost efficiencies of the nurse in saved Clinical, GP, and Specialist time will make the cost of the Nurse neutral to positive in real terms. Additionally, the availability of Nursing care can achieve additional savings by delaying entry to Nursing Homes; a kinder and better way to deliver cost effective Health services
2) The feeling of well being that comes from knowing there is a resource who understands the need of patients, such as those with Parkinson’s, will put a smile on the face of patients & their families with difficult life decisions in front of them.
Dr Simon Lewis said projects like this would ‘serve to significantly decrease the costs of Parkinson’s disease to the community and help to prevent people living with Parkinson’s from entering hospitals and aged care facilities’. He also said:
The ‘Shoalhaven Project’ may represent the first step in the launch of a national network of specialist nurses serving regional and remote communities.
Dr Lewis presented a report on the progress of the Shoalhaven project at an afternoon tea here in Canberra on 26 October at which a number of you were present. I circulated his PowerPoint presentation to all members and senators earlier this month and I hope some of you have had the chance to have a read through it.
This model of innovation and personalised care embedded in the rural and regional communities is proving to be the way forward for dealing with these diseases in Australia. In my home state of Tasmania, the state government has started advertising for four specialist nurses to improve the treatment of people with Parkinson’s disease and other progressive neurological disorders. These specialist nurses will be embedded across the state and will greatly reduce the pressure on our hospitals, nurses, nursing homes and GPs, as well as greatly improving the quality of life for the over 2,500 sufferers and their families.
I want to commend the work of Dr Simon Lewis, Sister Marilia Pereira and Parkinson’s Australia for their tireless efforts in supporting those suffering from Parkinson’s and motor neurone disease. I also want to take this opportunity to pay tribute to Mr Norman Marshall, former CEO of Parkinson’s Australia. Norman has worked tirelessly to promote Parkinson’s Australia and to support those suffering from the disease. Joanna Gash MP, deputy convener of the Parliamentary Friends of Parkinson’s, and I have thoroughly enjoyed working with him and wish him the best. (Time expired)