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Monday, 1 December 2003
Page: 23321


Mrs GASH (3:32 PM) —I move:

That this House calls on the Government to fund a national study to determine the prevalence of Parkinson's disease in the Australia community and that:

(1) the study determine the number of suffers, the range of symptoms experienced by suffers, the length of time taken to reach diagnoses of sufferers, the extent of the load on carers, and quantify the real cost of Parkinson's Disease in Australia;

(2) on presentation of the study to the Parl-iament, sufficient resources be applied to improve the diagnoses, treatment and quality of life for sufferers and their carers, in both the short and long-term; and

(3) included in any action subsequent to the presentation of the results of the study, further resources be made available to better educate current and future doctors, nurses and paramedics in the range of symptoms identified as pertaining to Parkinson's Disease, how to diagnose the disease and how to advise the sufferers and carers involved.

Today I have before the House a motion calling for a national study to determine the prevalence of Parkinson's disease in Australia. Faced with the reality of the significance of Parkinson's disease that a population study is likely to demonstrate, the government will need to act to redress the current inequities experienced by Parkinson's sufferers. In terms of the process of diagnosis, treatment and quality of life, Parkinson's falls behind when compared with the available resources for other better-known conditions. Unlike MS and Alzheimer's, Parkinson's is a sadly neglected disease with no specific programs of assistance, even though it is second only in prevalence to Alzheimer's in neurological disorders.

My first encounter with Parkinson's was at a luncheon where the caterers were a group of people with the disease. I felt very awkward being served by people who were shaking. My natural reaction was to say, `Here, let me help.' The situation was confronting, and it challenged me to address my own inhibitions. For a moment, I want you to imagine you are in this situation: you are aged between 25 and 45; you have had worrying symptoms for the last eight to 10 years; you have been back to your own doctor on a number of occasions; eventually you make the decision to get a second opinion, then a third, then another; and so it goes on. One doctor tells you, `Don't be silly. It's just menopausal,' while another says, `Women don't get it.'

After 13 years of sitting in doctors' surgeries and being called everything from a hypochondriac to a drunk, Pat Barkley's diagnosis eventually found her. For years the 60-year-old Parkinson's sufferer from Sussex Inlet in my electorate of Gilmore had noticed unusual symptoms including a heavy arm and shaking legs, but numerous visits to GPs and neurologists proved fruitless. One neurologist even said to Mrs Barkley, `There's always the grog.' Mrs Barkley was in shock—he had already asked if she drank, and she did not. Pat Barkley thought she was going mad.

For a man, the doctor might describe your symptoms as simply a frozen shoulder. For those that live in rural or regional Australia, the likelihood of being diagnosed at all narrows considerably. You have increasing difficulty getting out of a chair, your writing gets smaller, your voice gets softer, your feet appear to freeze solid to the floor and will not obey your instructions to walk, the small tremor in your right thumb or some other limb increases, and so it goes on. You eventually find after all these years a doctor who has a vague recollection of a single hour of education in their medical studies that was devoted to Parkinson's. This doctor sends you to a neurologist who finally confirms the diagnosis.

Like most Parkinson's sufferers, Mrs Barkley is now heavily reliant on medication to lead a functional life. Just as important is the other medicine: a healthy dose of laughter combined with the love and support of friends and family. There is no blood test for Parkinson's disease and no other simple diagnostic test. Sufferers are not included in any government survey, because they do not fall within the geriatric age group. They are not included in the burden of disease study, because they are not dead or in a hospital or nursing home. They are not classified in a particular group with special needs and are invisible to health authorities and government, resulting in a lack of access to services.

Parkinson's sufferers must have the right to be counted so that they will eventually receive the right assistance that will ease the burden on government, the health system, carers and families, allowing them to stay at home for longer—the place many want to be. This scenario is not uncommon for undiagnosed Parkinson's sufferers in Australia. Misdiagnosis of the disease is also quite common. This motion not only seeks to redress the systemic inequity of Parkinson's sufferers; it also sets a direction for improving their quality of life. It is a sad indictment of our society that there is a tendency for people with Parkinson's to withdraw from public view.

Each of us needs to consider how a person copes with the effects of a debilitating condition. We need to be seeing less of what is and imagining more of what could be—not just giving people hope, but invigorating them with a vision for a better world. I call on my colleagues from all sides of politics to join the parliamentary friends of Parkinson's so that we have a united force. Today is our opportunity to support this motion, thereby giving our support to many thousands of Australians, diagnosed or otherwise, dealing with the effects of this cruel disease. Finally, I recognise the work presently being done by the friends of Parkinson's in Nowra and the southern highlands, and thank them for keeping me informed of their ongoing battle to have their group recognised and for the friendships that they have shown me. It has certainly made me realise that there but for the grace of God go I.


The DEPUTY SPEAKER (Mr Jenkins)—Is the motion seconded?


Ms Gambaro —I second the motion and reserve my right to speak.