World Parkinson's Day

Ms BEDFORD (Florey) (12:11): I move:

That this house—

(a) recognises that 11 April 2015 is World Parkinson's Day;

(b) acknowledges the support provided by Parkinson's South Australia for people with Parkinson's disease and other movement disorders and their families; and

(c) welcome Parkinson's Australia to Adelaide as they host their national conference between 27 and 29 May 2015 at the Adelaide Convention Centre.

Today I want to recognise World Parkinson's Day, which was held on Saturday 11 April this year. Interestingly, the wait sees me able to observe the day in September which is, of course, Parkinson's Month. World Parkinson's Day was run in April by the Shake It Up Foundation and the Michael J. Fox Foundation. The day hopes to shine a light on Parkinson's and encourage the community to raise money for a cure for this debilitating disease. This year the Shake It Up Foundation asked Australians stop and pause and give a voice to those affected by Parkinson's. With over 3,000 people in Australia joining the Pause4Parkinson's festivities, I am told that it was all a huge success; but, there is still a lot more that needs to be done to both raise awareness of this disease and the funds to find a cure.

The theme of Parkinson's Month, being held throughout the whole of September, is 'get moving', where members of the community and members of parliament are being encouraged to increase their knowledge by attending a workshop or seminar hosted by Parkinson's South Australia. I would like to encourage members to consider attending a workshop or a seminar or to attend one of the many support or education groups and fundraising events.

Parkinson's SA is a great organisation, and I commend the whole of the team, CEO Christine Belford and her president, Associate Professor John Power, and everyone involved. In addition to Parkinson's Month and World Parkinson's Day in May this year, Parkinson's Australia hosted the national conference at the Adelaide Convention Centre. The conference was designed to provide the latest information and research into Parkinson's and its management for health, care workers, and the conference was also made available to those with Parkinson's and their families to learn about the latest techniques and information.

The information included: the latest in stem cell research and the potential benefit for those living with Parkinson's; how environmental and genetic predisposition are involved in the development of Parkinson's disease; and, in conjunction with the Dystonia Support Group, they held a stream on day two of the conference that featured the latest information on dystonia, which is a state of abnormal muscle tone that can result in muscular spasm. I know that the conference was very well attended and everyone got a lot from it.

Parkinson's is an extremely prevalent disease and it is more common than prostate cancer, bowel cancer and many other cancers. An alarming 30 Australians are diagnosed with it every day and an estimated 8,000 Australians are currently living with the disease. Of those, there are over 8,000 diagnosed cases living with the disease in South Australia, with the potential for a much higher figure as many others are not yet diagnosed. This, sadly, represents an increase of 17 per cent over the past six years. Parkinson's South Australia provides much-needed support and information to these 8,000 South Australians with Parkinson's and, of course, their families.

Many people believe that Parkinson's is simply a disease that affects older people, with an average age of sufferers being diagnosed at around 65. Recently, though, it has been discovered that many young people are increasingly being diagnosed with young-onset Parkinson's. It has been estimated that around 20 per cent of sufferers are under 50 years old and 10 per cent are diagnosed before the age of 40.

I will give a bit of background on Parkinson's for those not familiar with the effects of this terrible disease. It is a progressive neurological condition that affects people from all walks of life. What happens is that the cells in the body that produce dopamine start to die. Dopamine is a chemical that helps you move normally. Sadly, there is no known cause for this and, more importantly, there is no easy way to diagnose the disease. There are currently no simple blood tests or brain scans available.

A specialist neurologist examination is needed for each person who shows signs of Parkinson's to assess the physical signs of the disease, which can include not just the better known movement symptoms of tremor, rigidity and akinesia (which is abnormal movement) but also some lesser known symptoms, for example, pain (which can be often severe), anxiety, depression and problems with memory and sleep. These symptoms can have a severe impact on the day-to-day life of a person with Parkinson's and flow on to their families. These symptoms are usually slow to develop and gradually get worse over time, and each person can be affected in a different way and at a different rate of progression.

Parkinson's disease, sadly, has a high rate of mortality. Some sufferers live with Parkinson's for a considerably long time, with the symptoms getting worse and subsequently causing their death. More research and assistance is needed to ensure people suffering from this disease can adequately manage their symptoms and its progression and that, eventually, one day we find a cure for this terrible affliction. I hope the breakthrough may come from some of the marvellous work being done here in Adelaide in medical research.

I was particularly pleased during last year's state election campaign with the Weatherill government's promise, and that of the opposition, to provide more dedicated nurses to provide ongoing education and support for those with Parkinson's disease. This support will assist them in navigating their way through the health system, as well as providing a variety of other health-related services as required, such as referrals to speech therapists and physiotherapists and other medical specialists.

I am pleased that the Premier and the health minister have already delivered on this key health election promise in the north. I welcome the recent appointment of a very experienced local nurse, who was most recently the specialist Parkinson's nurse at the Flinders Medical Centre. The appointment of a specialist Parkinson's nurse in the north will have a significant positive impact in the local area. The reason this and other specialist Parkinson's nursing positions around the state are so important is that a key challenge for people living with Parkinson's is to manage their condition adequately so that they can enjoy the highest quality of life for as long as possible.

These dedicated nurses can assist with development of programs and care regimes that encourage self-management of the condition and, therefore, put in motion steps to give sufferers a greater quality of life. These nursing appointments can also relieve some of the pressures on hospitals and services. Many people with Parkinson's are often admitted to hospital for reasons that could be avoided, in particular, falls and medication mismanagement.

Apart from the personal costs at many levels, the economic cost of Parkinson's in Australia was calculated by Deloitte Access Economics in 2011 as being $8.3 billion, that being an increase of 48 per cent over the preceding six years, mainly due to rising costs in the health system. Deloitte also calculated that a single Parkinson's nurse could save the taxpayer, on average, $58,000 in consultant appointments each year, $100,000 per day on avoided hospital appointments and around $200,000 per year in bed days. This represents a significant saving to the state in funds that can then be used elsewhere in the health system.

A constituent of the Florey electorate, Mr Peter Hill, and his late wife, Mrs Iris Hill (who had Parkinson's and has, sadly, passed away), are one couple that would have benefited greatly from a Parkinson's nurse in the north. Mr Hill was in regular contact with my office, lobbying for extra support for not only his wife but all sufferers and their families. Hearing the stories that the Hills faced and had to deal with on their own was quite heartbreaking. They are the reason this issue was lobbied for fiercely and became an election promise. I am proud I have been able to acknowledge their contribution to this in my message here today.

Even members in this place and their families could be called on to face and deal with Parkinson's at some stage, and I encourage everyone to support Parkinson's SA and the Shake it Up Australia Foundation in raising awareness and, most importantly, the much-needed funds to find a cure for this terrible disease. Members can find out more on the Parkinson's SA website at www.parkinsonssa.org.au. Let's all get behind their work and their initiatives and help fight Parkinson's.

Mr SPEIRS (Bright) (12:18): I too rise today to support the member for Florey's motion which seeks to recognise those who are suffering from Parkinson's disease and the need for all South Australians to increase their awareness of those who are suffering from this disease, and for the South Australian government, also, to have an increased focus on support for those who are suffering from this disease and their families.

As has already been mentioned this morning, there are approximately 80,000 sufferers of Parkinson's disease in Australia, of which around 8,000 are located in South Australia. That adds up to around 30 people being diagnosed every day in Australia with this disease. It is a disease that still remains a mystery to the medical profession in many ways. It is a disease which manifests itself in different ways, depending on the sufferer. People suffer from different symptoms and it is a disease which people find difficult to get control of and to keep a handle on. As a community, it is important that we have an increased understanding of what it means to suffer from Parkinson's disease and how we can be supportive of those people who suffer from the disease, and their families and carers.

As has also been mentioned by the member for Florey, Parkinson's sufferers are growing in number. The number of people diagnosed year on year in Australia and in South Australia continues to grow. Part of that is because diagnosis is easier and more symptoms are being recognised as being part of Parkinson's disease, but there is no doubt that, aside from better diagnosis, the number of sufferers is growing as well. That means that we as a community need to understand this disease and have mechanisms in place within our health system and within our community to provide support.

A particularly worrying trend when it comes to Parkinson's disease is the number of younger people who are being diagnosed with the disease. It has traditionally been seen as an illness which is only suffered by older people and, sadly, that is increasingly not the case, with more younger people being diagnosed with this neurological condition. Obviously, it is bad enough older people suffering from it, but the way it curtails the lives and dignity of younger people is perhaps even more significant, preventing them from potentially being part of the workforce and living life to the full.

I saw recently that a school peer of mine from Scotland announced that he had been diagnosed with Parkinson's disease at the age of 35. Watching his journey and the uncertainty within that journey over social media was quite shocking. I continue to watch that unfold on my Facebook feed and I see the real-life impact that suffering from a disease such as this at a younger age can have.

I want to pay tribute today to the work of Parkinson's SA, led by Christine Belford. It is an excellent organisation that seeks to advocate for those with Parkinson's disease, increase awareness of the disease, raise funds to contribute to care and, in particular, for research into cures for Parkinson's disease. For those who have not had anything to do with Parkinson's SA, it is certainly an organisation that, as members of parliament, we should be looking into and looking for ways that we can raise awareness of this organisation in our communities so that those who are suffering from Parkinson's or who have family members who suffer from Parkinson's disease can be made aware of the work of Parkinson's SA, and can look to support that where possible. Parkinson's SA has annual fundraising events that can be supported.

In 2013, in the lead-up to the state election when I was a candidate for the seat of Bright, I was approached by a couple, Lindsay and Jenny White. Lindsay was the president of the Parkinson's support group of Brighton. They invited me along to their group to get to know what their group does and build a good connection with that group.

As part of getting to know what the Brighton Parkinson's Support Group does, I was able to attend a meeting with the shadow health minister at the time, Rob Lucas, and representatives from the Brighton Parkinson's Support Group at Parkinson's SA, meet the staff there and really hear their need at the time, which was the creation of additional Parkinson's specialist nurses in the South Australian health system.

We were able, entering the election campaign, as an opposition to have a policy to increase the number of Parkinson's specialist support nurses, and the government did match that. We have had a question in the house this week on that very matter. I would urge the government to fulfil that commitment in full. These support nurses are incredibly important because they come with that specialist knowledge and, as the member for Florey mentioned, they can divert people from the traditional healthcare system, keep people out of hospital, help them to manage their own illnesses, manage their symptoms, and keep control of their lives for much longer.

Having specialist nurses across a range of diseases is, I believe, an important approach to contemporary health care. We see that in action with Parkinson's nurses. We have a Parkinson's nurse operating, I believe, out of the Flinders hospital, and there is one based at Modbury. I understand the government is looking to have one who will be based in country South Australia, so that will take us to three. The government's election promise was to have four Parkinson's specialist nurses. I would urge the government, urge the health minister to continue down that path.

The health minister mentioned on Tuesday when asked that question that there was a need to ensure that nurses had the training to be able to become Parkinson's specialist nurses. We need to ensure that happens because those four Parkinson's nurses, when they are all up and running in South Australia, will make a significant impact on helping people to identify and manage the symptoms of Parkinson's disease.

I would finally like to pay tribute to the fantastic work of the Brighton Parkinson's Support Group. It is one of the largest Parkinson's support groups in South Australia. It is a very active group. It provides fellowship and community not only for sufferers but for carers of sufferers. I mentioned earlier Lindsay and Jenny White. Lindsay was Jenny's primary carer. Jenny was the sufferer of Parkinson's disease. Lindsay was actually, when I first met him, the president of the Brighton's Parkinson's Support Group.

Sadly, since the election and since I first met Jenny and Lindsay, Jenny has passed on. She was not an old woman; she died in her 60s as a result of the strain on her body of Parkinson's disease. I just want to pay tribute to Jenny and the work she did in building the Parkinson's support community in my electorate and in particular in Brighton.

I want to pay tribute to her and also to Lindsay for continuing to enhance Jenny's legacy, although not a sufferer himself of Parkinson's disease, as someone who understands the strain and the toll that it takes, by continuing his involvement in the Brighton Parkinson's Support Group. He has continued as an advocate for sufferers of Parkinson's disease. Only last week, he met me in my office to discuss the need to get these Parkinson's specialist nurses in place in South Australia's healthcare system. I want to pay tribute to Jenny White and her legacy and thank her husband, Lindsay, for continuing that legacy.

Ms COOK (Fisher) (12:28): It is my privilege to rise today in support of the motion of the member for Florey, who is a tireless campaigner, let me tell you, of Parkinson's nurses, supporting awareness of the struggles faced daily by community members suffering from Parkinson's disease and their carers, often family as well, and showing support for the work of Parkinson's Australia.

World Parkinson's Day was celebrated on 11 April this year and we welcomed Parkinson's Australia to Adelaide as they hosted a national conference between 27 and 29 May at the Adelaide Convention Centre. One in seven people living with Parkinson's is under the age of 40, but the average age of diagnosis is between 55 and 70 years of age. The cause of Parkinson's has still not been determined. If you were told that you would live out your days with tremors, rigidity, abnormal movements, poor balance, impaired memory and concentration, voice swallowing speech changes, depression, anxiety, sleep disturbances, bowel and bladder dysfunction, restless legs and incredible tiredness you would likely say, 'No thank you.'

Supporting consumers with Parkinson's disease is important to ensure that they are able to remain independent and at home, and as you can see with the plethora of awful symptoms to combat, this is a challenge needing expert oversight. In order to see this care and the care of people with other debilitating disease processes delivered in the expert way that is required, the government has committed to the training of 100 additional nurse practitioners, of which four are to be in the specialty area of Parkinson's disease.

The role assists in symptom management and reduction of hospital admissions. Out-of-hospital support is provided through nursing assessments; multidisciplinary coordination of professionals and services; and counselling, both in person and over the phone, to assist with medication, education and family support. It actually takes four years for a nurse practitioner to be trained, and the Minister for Health has instructed SA Health that the provision of additional Parkinson's nurse roles is a priority.

As part of the government's election promise, a commitment was made to increase the number of Parkinson's nurses across the state, one each in the Central Adelaide Local Health Network and the Northern Adelaide Local Health Network and also with an outreach service into country regions. The current state of play in relation to Parkinson's nurses, which will definitely interest the member for Bright, is as follows:

Northern Adelaide Local Health Network has established and appointed a Parkinson's and other neurodegenerative disease clinical practice consultant role. This role has been taken up by the practice nurse from the south who, as a resident of the northern suburbs had been commuting for many years and working at Flinders.

Southern Adelaide Local Health Network has appointed a Parkinson's nurse for the southern suburbs since the previously mentioned transfer of its nurse. This nurse commences work next week. They will be very busy, with a snapshot from October to December 2014 showing the previous Parkinson's nurse undertaking 1,093 occasions of service for 122 individuals. This translated to an estimated saving of 62 outpatient appointments, 23 emergency department presentations and 19 hospital admissions during this period. This role is now an ongoing position where previously it had been contracted on a financial year to financial year basis. This shows great commitment to the value of that position.

Central Adelaide Local Health Network has a part-time Parkinson's nurse.

Country Health SA is considering a Parkinson's nurse for the country region with the service model currently being explored with consumers.

This makes a total of 2.5 FTEs, with the country appointment expected in the next six months.

My father was a keen craftsman. He had a shed—a serious shed. He turned the wood himself for three wonderful cots for all his grandchildren to use and for us to share between our families. Within five years of this, his tools sat idle, never to be used again as Parkinson's took hold. Within 15 years he was almost completely incapacitated and, in combination with other degenerative medical conditions, dad lost his struggle with this condition two years ago.

When I met Martin Valentine, a resident of Happy Valley battling Parkinson's disease, on a very hot day last November while out meeting constituents in their homes, I immediately connected with his story. It was also very hot and he had very cold water, so I appreciated that. It has been a pleasure to visit him a couple of times now and to chat about issues that are really important to him and his fellow Parkinson's battlers. I will not call them strugglers because they are absolutely fighting and battling.

It was a privilege to visit the southern Parkinson's support group also, as previously mentioned by the member for Bright. This was on Martin's invitation and I listened to ways that we can best offer this support and make life much easier to live for them. We are very happy to see the appointment of the additional Parkinson's specialist nurses.

Like all groups with cruel degenerative diseases, the more than 8,000 fantastic South Australians who are battling Parkinson's disease do so with great humour, dogged determination, and splash around copious doses of resilience and inspiration. I am so pleased to represent these amazing South Australians in this place. I thank the member for Florey for her commitment to the Parkinson's nurse project. Thank you to the member for Bright for speaking also on the motion, and I commend this motion to the house.

Ms BEDFORD (Florey) (12:35): I would like to thank the members who have spoken and acknowledge the great work that is going on in medical research in South Australia. Let's hope that the next time we get up to speak about Parkinson's it is to acknowledge that the cure has been found. I commend the motion.

Motion carried.