Legislative Council, Tuesday 24 March 2026
Ms FORREST (Murchison) – Mr President, I move –
- That the Legislative Council notes:
- Parkinson’s is the fastest-growing neurological condition globally, and Tasmania has among the highest prevalence in Australia, creating a critical public health challenge;
- Parkinson’s is a complex and progressive neurological condition characterised by diverse physical and cognitive symptoms requiring multidisciplinary care;
- The total economic impact of Parkinson’s in Australia, estimated at $10 billion annually, underscores the urgent need for investment in prevention, care, and support;
- The inequities in government support exist across Australia, with Tasmania’s funding and service access lagging behind, placing added burdens on Tasmanians with Parkinson’s;
- Evidence shows exposure to certain pesticides and industrial solvents increases the likelihood of Parkinson’s, placing Tasmanians in agricultural regions at greater risk;
- Critical gaps in service provision exist across Tasmania, including Parkinson’s clinics, neurological and gerontology services, in-home care, and early diagnosis support;
- The need to enhance education and training programs for general practitioners and allied health professionals to support early Parkinson’s diagnosis and ongoing, evidence-based care;
- Despite challenges, Tasmania has a world-class cohort of Parkinson’s experts and research institutions, including the University of Tasmania, Menzies Institute, and Wicking Dementia Centre, pioneering innovative care strategies, education, and multidisciplinary approaches that significantly improve outcomes; and
- Volunteer organisation Parkinson’s Tasmania plays a critical role within the cohort as a ‘leading voice’ for Tasmanians living with Parkinson’s, providing essential support, education, advocacy, coordination and cost savings to the State.
- That the Legislative Council calls on the Tasmanian government to:
- Support the delivery of newly diagnosed Parkinson’s clinics and centres of expertise across the state, offering integrated and holistic care throughout all stages of the condition;
- Work with the Australian government to develop and implement multidisciplinary, patient-centred care models involving neurologists, allied health professionals, psychologists, and other specialists to provide healthcare to patients with Parkinson’s;
- Support research bodies to examine the links between pesticides and industrial solvents and Parkinson’s prevalence, and take the necessary action to protect Tasmanians;
- Work with the Australian government to introduce process improvements to integrate state and federal care systems, repairing fragmented links between inpatient, outpatient, and community care;
- Support the development of a local workforce trained in in-home care, enabling Tasmanians to remain in their homes longer and alleviating an escalating financial burden on Tasmania’s health system and budget; and
- Provide targeted government support to Parkinson’s Tasmania as the central advocacy body for Tasmanians living with Parkinson’s, ensuring all those affected can access the high-quality services, education, and support they deserve.
The motion raises key matters related to the neurodegenerative condition of Parkinson’s and the challenges we have in this state. In moving this motion, I speak with both conviction and genuine concern for the thousands of Tasmanians living with Parkinson’s right now and for the organisations that stand with them every single day.
Parkinson’s is not a condition that announces itself gently. It arrives and stays, reshaping how people move, think, how they connect with the world around them. It is progressive, complex, and for many Tasmanians and their families it is an isolating and frightening journey.
I will begin with the scale of what we are confronting. Parkinson’s is the fastest-growing neurodegenerative condition in the world, not just Australia. Globally, between 8.5 and 10 million people are currently living with Parkinson’s. The number of people with Parkinson’s has doubled over the past 25 years, and is increasing at approximately 15 per cent per year worldwide. It now effects one in six people over the age of 65, from one-in-nine in earlier estimates.
Parkinson’s is growing faster than Alzheimer’s disease, and faster than any other neurodegenerative conditions. This includes multiple sclerosis and motor neurone disease combined. This is the this is the scale, and why we need to be really focused on this.
The World Health Organisation has estimated that neurodegenerative diseases, including Parkinson’s and Alzheimer’s, will become the second leading cause of death worldwide by 2040, surpassing cancer. Population ageing is the primary driver of this growth and that is acutely relevant here in Tasmania.
ABS data shows Tasmania has a higher proportion of people over the age of 50 than the national average, and the data goes further. Tasmania has the highest rate of Parkinson’s medication prescriptions of any state or territory in Australia. Research being undertaken by Associate Professor Barbara de Graaff, at the University of Tasmania, drawing on the Australian Institute of Health and Welfare’s National Health Data Hub, confirms this picture.
The prescription data, largely for levodopa, is clear and consistent. Tasmania has, in all likelihood, the highest prevalence of Parkinson’s in the country. This is not a footnote. This is a public health emergency unfolding in slow motion across our communities, hospitals and our homes. Parkinson’s currently cost the Tasmania state government an estimated $165 million per year. Based on a progression of the condition, improved diagnostics in Tasmania’s ageing demographic, that figure is expected to double by 2040.
For individual Tasmanians, out of pocket cost of managing the condition is estimated to be around $15,000 per year. That figure does not include the loss of income for a person living with Parkinson’s, nor the loss of income for their care partner. Many do not have the disposable income to meet these costs.
When we look at the total national picture, the economic cost of Parkinson’s in Australia is estimated at around $10 billion annually. These are not abstract numbers. They represent lives disrupted, careers cut short, families stretched to breaking point, and a health system absorbing costs that could, with the right investment, be reduced or delayed. Given that Parkinson’s generally doesn’t impact one’s life expectancy, Tasmanians are living with Parkinson’s for years, often decades.
Here is what makes this particularly important in the context of the 20-year preventive health strategy, that Parkinson’s Tasmania has also been engaging with. The evidence suggests that approximately 80 per cent of Parkinson’s cases may be preventable or delayable. Only about 20 per cent of the cases are linked to genetic factors. The other 80 per cent involve environmental triggers and lifestyle risk factors that we can act on.
As Professor Jane Alty, one of the world leading Parkinson’s researchers based right here in Tasmania has noted, a decade ago we did not think we could prevent dementia. Now dementia prevention is an accepted strategy, the same as possible for Parkinson’s. Prevention is no longer aspirational, it’s achievable and it is essential.
Parkinson’s is far more than a movement disorder. The tremors and the rigid gait are what most people picture when they hear the word Parkinson’s. But Parkinson’s is also depression, anxiety, cognitive impairment, sleep disorders, swallowing difficulties, loss of smell, hallucinations, dementia and the cascade of other non‑motor symptoms that are often invisible to the outside world but can be deeply debilitating for those experiencing them. The mix of motor and non‑motor symptoms have had a significant impact on the health and wellbeing of care partners and families. We know our community is impacted by Parkinson’s experience, stigma, isolation and significant social impacts.
This complexity, that has been described as the Parkinson’s iceberg, means that the condition requires not just one specialist, but many; urologist, Parkinson’s nurses, physiotherapists, occupational therapists, speech therapists, exercise physiologists, psychologists, social workers, dietitian and continence nurses all have a role to play. Multidisciplinary care is not a luxury.
It should not be considered luxury. It is an essential model of care, particularly for people with Parkinson’s and this is what the evidence demands. Critically, Mr President, Parkinson’s often begins 20 to 30 years before diagnosis with early non‑motor symptoms such as sleep disruption and loss of smell. This is why early detection matters so much. The earlier the intervention, the better the outcomes for the individual, for their care partner, and obviously for our health system. This motion acknowledges all of that directly.
Mr President, Tasmania’s challenges with Parkinson’s care are both structural and geographic. We have critical gaps in dedicated Parkinson’s clinics and centres of expertise. We have shortfalls in neurological services; if anyone’s tried to see a neurologist, you’ll understand. Tasmania has only 17 registered neurologists, compared with 57 in South Australia despite SA having a similar demographic profile. This disparity is staggering and unacceptable. We have inadequate access to in‑home care that would allow people to remain in their homes and independent for longer.
We have a general practise and allied health workforce that, through no fault of their own, have often lacked access to Parkinson’s specific training. The anecdotal evidence from the Tasmanian Health Service suggests that people with Parkinson’s are admitted to hospital at three times the rate of those without the condition, a direct consequence of a system that is reactive rather than proactive in this area.
We also know that people with Parkinson’s are more likely to stay in hospital for longer due to more complications during admission, so at increased risk of falls and injuries, chest infections like pneumonia and swallowing difficulties, and urinary tract infections given their continence challenges. Delays or missed doses of time‑critical medication worsen symptoms like rigidity or immobility.
Mr President, I’ve worked in hospitals, I know what it’s like. You have the scheduled time for your patients to receive their medications, and something happens and you just can’t get back. This medication is time‑critical, these people are much better cared for in our community, not in an acute hospital setting. Reduced mobility, even for a short period in bed, can cause rapid loss of strength and function, triggering longer rehabilitation and discharge until they can safely move again.
As we know, these hospitals are the worst type of place to care for people with Parkinson’s and other conditions, unless there is some other acute medical reason that that has them there. Confusion or delirium, especially in unfamiliar hospital settings, is common. Hallucinations or dementia in the latter stage of the condition can complicate care and prolong admission. Mr President, we need to be sure that every dollar spent in the acute health setting is not being spent on costs that could have been avoided. That is in situations where timely access and support to our primary and preventative health services and early diagnosis could have prevented admission. This matters. It matters even more right now.
The north-east and the north-west of the state stand as stark examples in the wrong way; regions with no relevant Parkinson’s specific specialist services at all, areas that are largely agricultural and this is not good enough. This, Mr President, leads me to another dimension of this motion that I want to address directly because it’s too important to pass over lightly.
The evidence linking certain pesticides and industrial solvents to Parkinson’s is serious and growing. The World Health Organisation has already called for the banning of pesticides such as paraquat and chlorpyrifos and chemical such as trichloroethylene, which have been linked to the onset of Parkinson’s. The use of paraquat has already been banned in the United States and China, yet it continues to be used here in Tasmania in forestry, general agriculture and poppy farming.
Research indicates that up to 80 per cent of Parkinson’s cases may involve environmental triggers. This is why the north east and north west are so important here because we have such a large agricultural sector. The study from the University of Alabama found that preventable environmental risk factors may account for nearly one in three Parkinson’s cases amongst men and one in four among women.
As I’ve said, Tasmania is an agricultural state. Our farming communities, the people who grow our food, tend our land and have built their lives in regional Tasmania, may be at elevated risk, but we have no services in those areas. The Australian Pesticides and Veterinary Medicines Authority is currently reviewing the use of paraquat. We need the Tasmanian Government to actively engage with the process and take protective action. This is not alarmism. It is responsible public health governance, and it sits directly within the scope of the Parkinson’s Tasmania 20‑year preventive health strategy and something I urge our government to take seriously.
Mr President, I want to now speak about Tasmania’s genuine strengths because this motion is not just a catalogue of deficiency. We do have some strengths. It’s also acknowledgement that we have, in Tasmania, world‑class expertise and world‑class institutions in this area. The University of Tasmania, the Menzies Institute for Medical Research, and the Wicking Dementia Research and Education Centre represent a remarkable concentration of knowledge and capacity.
Professor Michele Callisaya has recently secured $2.88 million in federal government funding for the ParkinsonNet Australia Research Project, an internationally recognised best‑practise multidisciplinary model of care first developed in the Netherlands and shown to lower disability hospitalisation rates and health care costs.
Research is so important. This presents Tasmania with a unique opportunity to lead this research and benefit from its translational application to Tasmanian communities. A bespoke multidisciplinary network across the state where informed and continuative care close to home is accessible and responsible. We owe this to our fellow Tasmanians, particularly those in our rural communities.
Complementary but separate to Parkinson’s Australia, the Tasmania Parkinson’s Project is a research and community initiative run by the University of Tasmania that focuses on improving life for people with Parkinson’s. The project is building a research registry of people with Parkinson’s that are willing to take part in studies and be contacted about new research. I encourage anyone who’s interested to look it up and get involved.
The project is spearheaded by Professor Jane Alty, a neurologist and clinical researcher. Professor Alty has developed the Tas test[tbc11.54], a world‑first online screening tool using artificial intelligence to measure hand movements, speech patterns and cognitive abilities to identify those at higher neurological risk, which is now gaining global attention.
The UTAS Parkinson’s Massive Open Online Course, or MOOC, co‑developed by Professors Alty and Callisaya, has been completed by more than 20,000 people from 156 countries and is being celebrated internationally. I know there are a lot of Tasmanians who participated in that. Its content is consumer focused, capturing lived experience with a beautiful blend of clinical and practical care information. It’s a game changer and funded in part by philanthropists that are committed to improving education and accessible information to everyone, anywhere, anytime and it’s free.
What is evident is we need better and more reliable data on Parkinson’s so we can inform policy, budget allocation, and effort. Associate Professor Barbara de Graaff from the University of Tasmania is building the health economic evidence base on Parkinson’s prevalence and cost in Tasmania. I urge the government to look at her work and consider it well.
Tasmania has one university; it has an ageing population; a small geographic scale that allows it to pilot and scale solutions faster than anywhere else; and a collaborative cohort of researchers, clinicians, health professionals, and advocates who operate in a way that could genuinely be described as best practice. We have the right elements to lead the nation in Parkinson’s prevention, detection, and multidisciplinary care.
At the centre of the lived experience of Parkinson’s in Tasmania is Parkinson’s Tasmania. Parkinson’s Tasmania was established 40 years ago to serve the needs of people affected by Parkinson’s. For four decades, it has been sustained almost entirely by volunteers at a board level and operationally. When you look at what this disease costs the state, one would think that when there are opportunities here to model and pilot some of the work that’s coming out of our university and research centres, this is where we should be looking.
That extraordinary commitment of Parkinson’s Tasmania has delivered real results: support groups; peer connections; an information phone line; education; advocacy; and navigation assistance through a complex health system. It has been the leading voice for Tasmanians with Parkinson’s, and it saves the state money: every time it helps someone navigate the system effectively, every time it supports a carer who might otherwise burn out, every time it enables someone to stay at home rather than entering residential care permanently, or every time it avoids hospital admission.
However, the environment is changing. Backed by close to $1 million in federal government funding, the National Parkinson’s Alliance – in which Parkinson’s Tasmania plays a key national role – has developed the National Parkinson’s Action Plan. This plan was launched in Canberra on 24 March by the Parliamentary Friends of Parkinson’s. This is set to be a game‑changer, but only if Parkinson’s Tasmania secures funding to implement the key initiatives flowing from the plan. This is funding that actually prevents cost to our system; otherwise Tasmanians will miss out. Tasmanians with some of the highest rates of Parkinson’s and the risk of Parkinson’s will miss out.
This will only add to the inequity that our Parkinson’s community faces on a daily basis across the state, and more acutely in the north‑west and north‑east. Prevalence is increasing; demand for services is growing; research activity is expanding; government policy activity is intensifying; and philanthropic interest is building, which is great, but we do need the government to step up as well. The volunteer model, which has served Tasmania so well for 40 years, can no longer carry this workload alone. This is not a criticism; it’s an honest recognition of the scale of what’s being asked, and I acknowledge the volunteers that have given their hearts and souls to this organisation for 40 years.
As we approach the state budget the pressure on community service is acute. We all know that. Organisations across Tasmania are being asked to do more with less. Parkinson’s Tasmania is one of these essential organisations. For the first time in its history, it has sought targeted support from government to meet rising demand, to sustain its operational capacity, and to fulfil its potential as the central coordination point for the Parkinson’s community in this state.
I’m pleased to learn recently of Parkinson’s Tasmania’s innovative new partnership with Lifeline Tasmania. This collaboration will expand existing Lifeline services to better recognise and care for people living with Parkinson’s. Parkinson’s Tasmania is also collaborating closely with Palliative Care Tasmania and MS Plus to identify opportunities to share resources, consolidate effort, and cross pollinate through education, peer support, and cross referral/shared navigation pathways. It’s exactly the kind of cross‑sector initiative that delivers better outcomes for vulnerable Tasmanians, and it’s the kind of initiative that deserves to be supported and sustained.
Whilst they are asking for financial support, they’re also looking at the best ways they can to make the most of the money that they hopefully will see, to deliver the services they do so amazingly well. With targeted budget support, Parkinson’s Tasmania can continue to ensure that no Tasmanian living with Parkinson’s has to face that journey alone.
This motion calls for the Tasmanian government to act on a clear and comprehensive agenda: to support newly‑diagnosed Parkinson’s clinics and centres of expertise; to work with the Australian Government on multidisciplinary patient‑centred care models; to support research into pesticides and solvent links and take protective action; to integrate state and federal care systems and repair fragmented pathways; to develop a local workforce trained in in‑home care; and to provide targeted support for Parkinson’s Tasmania as the central advocacy body for Tasmania affected by this condition.
None of these asks is unreasonable. All of them are achievable, and the evidence base compiled by world‑leading Tasmanian researchers, clinicians and people living with Parkinson’s and their carers, is there to support every one of them. They’re not asking for things that aren’t realistic or they haven’t already been delivering in some form or other.
The decisions we make in this place, the allocations made in the budget, have real consequences for real people. We need to remember the people behind the numbers, such as a person in the north‑west right now managing a Parkinson’s diagnosis without adequate specialist support; a care partner, perhaps a spouse, perhaps an adult child, wondering how much longer they can hold everything together; a researcher waiting for the government investment that would allow a world‑leading prevention model to be piloted right here in Tasmania.
Tasmania has the expertise, the institutions, the research capability and an extraordinary organisation in Parkinson’s Tasmania that is ready to do the work. What is needed now is the will and the funding to match that commitment. Investment in primary care, multidisciplinary care and early diagnosis support will save the health budget money. You will save the money by reducing hospital admissions and improved quality of life for those with Parkinson’s and their carers.
I close in acknowledging the expertise, dedication and experience – including lived experience – of those who provide support to people with Parkinson’s. Some of the people providing this support are Parkinson’s sufferers themselves or people with Parkinson’s. I acknowledge the amazing team at Parkinson’s Tasmania, including the chair and president, Claire Myers, former chair, Mike Whitehouse OAM, and all those involved in the critical research being done, particularly at our own university, the Wicking Dementia Research and Education Centre and the Menzies Research Centre. I say to them: your work is critical and appreciated.
I absolutely appreciate the pressure on our state’s finances. I’ve been banging on about it for quite some time. However, where funding of community organisations and research can and does reduce hospital admissions, and thus costs, and enables people to live more productive lives with enhanced quality of life, the savings occur not just in our health budget but in other areas of our budget as well. I commend this motion to the House and urge the government to respond to it with the seriousness and urgency it deserves.