Motions

Motor Neurone Disease

Ms LUETHEN (King) (12:35): I thank everyone in the house today who agreed to move this motion forward, because it is a very important one. I move:

That this house—

(a) notes that motor neurone disease (MND) is a complex, high-needs disease that generally has rapid onset causing significant disability;

(b) notes that the average life expectancy from diagnosis to death with MND is only 27 months;

(c) recognises that MND SA is the only NGO in SA providing equipment and support to more than 200 South Australians living with MND, and their family carers;

(d) acknowledges that NDIS and My Aged Care packages often do not adequately cover the needs of people living with MND due to the rapid onset of the disease;

(e) recognises that people with MND often die while waiting for a support package or plan to be put in place or increased; and

(f) recognises the work MND SA do to support the South Australian MND community on a tight budget, relying on fundraising, donations and bequests.

I would like to thank the following people who have raised my awareness and knowledge of this complex and aggressive disease. These people are courageous and compassionate, and I commend them. Firstly, my King resident Chris Grigg wrote to me about this disease and his situation. He wrote:

I am a Golden Grove resident and a sufferer of MND. I am emailing you to possibly seek help in gaining funding for MND SA.

MND SA and FightMND are two completely different organizations and I do support both organizations.

MND SA survive solely on donations and fundraising so you could imagine the amount of time wasted in raising funds rather than providing support and care to MND disease sufferers and families.

I have been advised to go through my local member for help with this.

Hopefully you can help me to start putting pressure on the health minister and the state government to help with assisting MND SA.

It was Chris' letter that led me to move this motion and try to raise awareness of the people in our electorates across this house who are suffering from MND and of the great work that Motor Neurone Disease SA does, and share their need in this state for more support.

I would also like to acknowledge Brian Whittenburg and Anna Penhall, who were here this morning, who suffer from motor neurone disease. They joined us here, but they had to go home before this was read. I would like to acknowledge Geoff Thomas, MND SA chairperson, who also lost his wife, Mary, to MND. I also acknowledge another good and courageous man, Greg Downton, a local community member living with motor neurone disease, who could not be here today.

I acknowledge Garry Tidswell, a passionate King resident, who is advocating on behalf of those impacted by motor neurone disease and who currently has two friends suffering from motor neurone disease. I acknowledge Karen Percival, the Chief Executive Officer of MND SA, and the Minister for Health, who has been swift in responding to my request for more information on the current state of support for those living with motor neurone disease in South Australia and who supported my request to raise this motion in the house.

In addition, I thank my Liberal colleagues who supported my request to move this motion in the house and explore how we can provide more future support. Likewise, I thank the members for Kavel, Badcoe, Kaurna and Mount Gambier for reordering their motions today so that we can speak on this important matter.

I have been told by many people that Motor Neurone Disease SA offers important support to care for motor neurone disease sufferers, especially after diagnosis of this often terminal disease. I have been told by sufferers that after a diagnosis their whole world is turned upside down and that, without Motor Neurone Disease SA's ongoing support and care, they do not know how they and their families would have functioned or been able to move forward.

I am told by the CEO, those suffering with this disease, advocates and friends that there is limited support in South Australia for sufferers. Additionally, I have been told that there is confusion and a lack of awareness in the wider community that Motor Neurone Disease SA has little to do with Fight Motor Neurone Disease. This contributes towards a key issue for Motor Neurone Disease SA in their lack of funding.

Motor Neurone Disease SA survives on fundraising, donations and grants. As we all know, trying to fundraise and get donations is time consuming and resource intensive. For MND SA, their fundraising efforts are made harder by the general public's lack of awareness of the differences between the bodies out there raising funds. Motor Neurone Disease SA has told me that the MND associations in New South Wales, Victoria, Queensland and Western Australia all get funding from their state government, which is why they are appealing to our state government for funding support, so that MND SA can spend less time on activities trying to raise funds and more time supporting those with MND and their families, most importantly.

I would like to summarise some facts about MND in SA to help raise awareness and knowledge of the state of play in SA today. Motor Neurone Disease SA is a not-for-profit, non-government funded organisation and fundraising is its prime source of income. Its aim is to see a world free of MND, but in the meantime MND SA will continue to provide the best possible care to clients and their loved ones.

During 2017, MND SA provided care, information and support to over 200 South Australians and their families living with MND. They provided support and information for over 62 people newly diagnosed with MND and their families, provided support for the families of the 47 people registered with MND SA who passed away, had 10,458 contact points with people with MND provided 151 clients with equipment from a pool of 303 items, provided 187 information packs and held education sessions, which 528 people attended.

On Sunday 5 May, the Walk to D-Feet MND fundraiser was held at Glenelg. It is an event designed to raise awareness of MND and vital funds for MND SA so it can continue to support South Australians living with MND. Congratulations and thanks to all staff and volunteers at MND SA for organising the walk. It was certainly a job well done. Thank you to the organisers and participants who successfully raised over their target—in the end, they raised $113,000.

A very sad fact of this disease is that there is only a 27-month life expectancy from a diagnosis of MND. Approximately one Motor Neurone Disease SA client will pass away each month due to this disease. The staff work extensively with clients who are eligible for the National Disability Insurance Scheme; however, due to the nature of MND and short life expectancy, this is often unfulfilled. Of all MND SA clients, 68 per cent are not eligible for the NDIS. Most clients not eligible for NDIS start on a My Aged Care level 2 package, which is a subsidised scheme of approximately $15,000. This means that clients must pay towards every service they receive. This is certainly a matter I will be advocating on with federal colleagues.

Motor Neurone Disease SA assists clients throughout early diagnosis, including early referral to NDIS access, My Aged Care referrals, palliative care and completion of Companion Card applications. Average hours of support given to MND clients during their journey is equal to 63.6 hours, approximately 2.4 hours per month per person. The MND clinic at Flinders hospital only runs once a week for three hours, and there is a waiting list between clinic visits. There are a number of equipment shortages among clients: powered wheelchairs, hospital beds, specialised respiratory equipment, mobile shower commodes, tilt-in-space shower commodes and hoists.

MND SA wrote to the federal Minister for Health, the Hon. Greg Hunt MP, on 18 April this year seeking $400,000 for essential equipment and ongoing support of $400,000 per year over a five-year period to enable it to support clients who are ineligible for NDIS services. Importantly, MND SA is different from other MND charities such as FightMND because it is focused on helping people who are suffering. On behalf of MND SA and my King constituents, I ask all families affected by motor neurone disease to share your stories so that awareness is raised about this disease and the support needed to both find a cure and support those people diagnosed with motor neurone disease and their families.

I have said in this house before that I am personally committed to being a voice for the most vulnerable people in our community, and I am proud of our party because we are fighting to give all South Australians the best health care that they deserve. It is recognised that there is a big issue in disability care and support for Australians with motor neurone disease aged 65 years and over, and I will continue to advocate to get more support. It is not fair that for some people, due to their age, they cannot access NDIS and have to rely on aged-care services, when I was told just last week at an aged-care forum in the north that there certainly are long waiting lists.

It is not acceptable that people with complex needs who are waiting for aged-care services packages may not receive these in time. What is being made clear to me is that, until there is a cure, there is a need for care for sufferers and their families. I thank my colleagues for the opportunity today to recognise this serious and most often terminal illness. In summary, motor neurone disease is a progressive terminal neurological disease. It can strike anyone. There is no known cure and no effective treatment for MND. Each day in Australia two people die from motor neurone disease. Each day in Australia two people are diagnosed with motor neurone disease.

People with motor neurone disease progressively lose use of their limbs and ability to speak, swallow and breathe, whilst their mind and senses remain intact. The average life expectancy is 2½ years. More than 2,000 people have MND in Australia, of whom 60 per cent are male and 40 per cent are female. For every person diagnosed with motor neurone disease it is estimated that a further 14 or more members of their family and friends will live with the effect of this forever.

I am grateful to the Premier for listening to me and supporting those living with the disease and advocating for funding, and I am grateful to Karen, Chris, Greg and Garry for their brave approach, especially when they are suffering, in advocating for support on behalf of others now and in the future. MND sufferers, their families and all South Australians deserve better health care, and I hope raising awareness of motor neurone disease today together across this chamber will help us to work together across the house to gain support and ultimately a cure.

Mr BOYER (Wright) (12:49): I move to amend the motion by adding new paragraph (g) as follows:

(g) condemns the Marshall Liberal government for not providing any ongoing funding to support MND SA, making this the only state jurisdiction in Australia not to receive ongoing taxpayer funding for the respective peak MND association.

I would like to begin by first commending the member for King for bringing this motion to the house and doing what she can to support the fantastic staff of MND SA and the many people in South Australia who are living with MND.

As the member for King mentioned, she was introduced to this terrible disease through a constituent in Golden Grove who is here today, which is fantastic. I, too, was introduced to it by a resident in the seat of Wright, Mr Greg Downton. Along the journey, I have come to know Greg and his wife, Jean, quite well. I commend the passion that both Greg and Jean have shown for making sure that those battling this terrible disease get the help they so desperately need.

I am not quite sure how I personally would respond if I were given the diagnosis that Greg and Chris were given. I think you would be forgiven if you retreated from the world to deal with it privately, but Greg and Chris have chosen to use their diagnosis to fight for more support for other people suffering from the disease, and I think that is really commendable. Jean supported Greg every step of the way, as have the family, no doubt, who have gathered around Chris through his journey. Unfortunately, Greg and Jean could not be here with us today because they are off enjoying some very well-deserved sunshine in Queensland.

Can I also recognise some other people who are here today, in particular the CEO of MND SA, Karen Percival. When I first met Karen, and after meeting Greg and Jean, I wanted to learn a bit more about MND and the effects of the disease and what I could do as a member of parliament to help people in my electorate of Wright who are suffering from it and to help the association in providing more support to those people.

I caught up with Karen, and she explained to me that she had come from a very different sector and a very different background and certainly was not moved in any way by money or anything like that to work for MND SA. She just felt like she could use her very significant skills to work with this association to achieve some good. She is a force of nature and a fantastic advocate for people suffering from MND, and it is wonderful to see her in the chamber here today.

Only a fortnight ago, on Sunday 5 May, I joined hundreds of other South Australians at the association's fundraising event, Walk to D-Feet MND, at the Glenelg foreshore. The member for Morphett was in attendance, as was the Mayor of the City of Holdfast Bay, Amanda Wilson. The association aimed to raise $100,000 on that day but actually eclipsed that target by raising $115,000, which is an amazing achievement. I was fortunate enough to walk with Team Greg and all his fantastic family and supporters, of which there were very many.

Fundraising events such as this are so important to MND SA because it quite literally runs on the smell of an oily rag. As the member for King pointed out in her contribution, one of the issues the association faces—and I have encountered this when I have spoken to people and encouraged them to support MND SA—is that the very successful FightMND association, which has been spearheaded by Neale Daniher, is trying to raise money to find a cure, which is a noble cause and very important; however, many people out in the community get confused between the work that MND SA does on a daily basis in supporting people who are dealing and trying to cope with the disease and the work FightMND does to find a cure.

I can tell you, Acting Deputy Speaker, as Karen has told me, that it is by no means glamorous work; indeed, it is quite regularly heartbreaking. Putting aside the obviously very tragic effects of an MND diagnosis, as felt by not just the person who receives the diagnosis but also their immediate family and friends, it has a very powerful effect upon the staff at MND SA, who of course form very close bonds with the people they support, people who come to see them in what must be some of the darkest days of their lives.

As we do not yet have a cure—hopefully, one day we will—it is, of course, a death sentence. Upon meeting such brave people as Chris and Greg Downton, the staff know that they will be supporting these people from the start of their journey to what will inevitably be a very sad conclusion. To touch upon a matter that the member for King spoke about, last week I spoke to Karen on the phone and she did not sound her normal happy self. I asked her what was wrong and she said, 'Today has not been a good day because a client or a patient we have been supporting has passed away and we were only just given notification that we managed to secure them a level 4 My Aged Care package.'

Because of the issues around how long it takes to get those packages approved, that person had passed away before they were able to actually receive any benefit from the package. Karen was upset, as you can imagine. I join with the member for King in saying that I hope whoever is successful on Saturday at the federal election makes it a priority to do something about improving the time lines around having one of those packages approved and also the amount of money in those packages. A level 4 package is only something like $50,000, which is certainly better than nothing, but it is not enough.

I move the amendment today because MND SA currently receives no ongoing money from the state government to assist with the work they do. That work includes the support they offer to people on a daily basis and also the purchasing of equipment, which, as we know in areas like this and the NDIS, is not cheap. More funding is needed for that as well. Currently, around 68 per cent of MND SA clients are not eligible for NDIS funding and rely on the My Aged Care scheme to support them. As I said before, a level 2 package is $15,000 worth of support per year, and that is hard enough to get, let alone getting a level 4 package, which is only $50,000.

With the lack of funding and difficulty for patients accessing that funding, a lot of the support falls to family and, of course, to MND SA, who are trying to provide that support without any ongoing funding from this state government. For that reason, although I certainly and quite genuinely commend the member for King for trying to do something here, it is a little perplexing to have this motion talking about how wonderful the association is—which it absolutely is—and how terrible the disease is, and we all know that it would be a horrendous disease to be diagnosed with, when it really only serves to highlight that we do not have any ongoing funding for the association.

I use the opportunity that this motion presents to me today to call on the state government to provide what is, in the scheme of things, a meagre amount of money so that they can do more of the really important work they do and to make sure that whilst that very noble search for a cure goes on with Fight MND we look after people like Chris and Greg, who are dealing with the disease every day, to live dignified lives.

Ms LUETHEN (King) (12:57): In closing the debate, I thank the member for Wright for his contribution and for agreeing that this is certainly a terrible disease to suffer from and that we need to do more at state and federal levels to support the people who are suffering and their families and to find a cure. Therefore, I maintain my original motion.

The house divided on the amendment:

Ayes 18

Noes 20

Majority 2

Amendment thus negatived; motion carried.

Sitting suspended from 13:03 to 14:00.