Motor Neurone Disease

Ms LUETHEN (King) (12:47): 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.

This is the second year I have raised this motion about motor neurone disease in parliament because of its importance to people living in my electorate and in the broader South Australian community. Due to a lack of time, I think there will be fewer people talking about this today on both sides, and I want to acknowledge that as well.

Only last week, I had a conversation with a local man, Graham Johnson, who was diagnosed with terminal motor neurone disease only six months ago in 2019. MND is a neurological disease that causes the death of voluntary muscle neurones. People with MND eventually lose the ability to walk, speak and breathe. Mr Johnson has one of the most aggressive forms of MND, ALS, and has been given between 12 and 24 months to live. He has said he has severe muscle atrophy and has lost 14 kilograms over just the past few months.

Graham told The Bunyip paper: 'It just eats your muscles away and you get very tired. You get a lot of cramps throughout your body.' Graham told me that, prior to being diagnosed with MND, he was an avid runner. He took up running after his 60^th birthday. For 951 days straight he ran more than 13 kilometres a day, and he ran five marathons. He agreed with my observation that many people diagnosed with MND seem to have been very fit and very engaged in sport and fitness in the past. Graham told me, 'There's nothing I can do. I've just got to enjoy the time I have left and be positive.'

In 2019, Graham was able to raise over $14,300 for Fight MND, a Victorian not-for-profit organisation. He has now set his fundraising sights on the Motor Neurone Disease Association of South Australia (MND SA). Mr Johnson said that MND SA is 'absolutely marvellous' and 'they help your family out immensely.' They rely on fundraising to deliver their services. Sadly, fundraising has just got a bit tougher right now during the current COVID-19 pandemic. Graham, like most people with MND, is now confined to his house. Because people living with MND are sick and vulnerable, they will rely on family and friends to shop for them. Imagine knowing you only have months to live and now you can only wave at people through the window. Imagine living your last months in isolation.

Today, this motion notes that motor neurone disease is a complex, high-needs disease that generally has rapid onset, causing significant disability. Last year, a group of people living with MND came into the parliament for morning tea. We had hoped to do it again this year but, with COVID-19, this has been prevented. In parliament, in my electorate and at the awesome MND gala ball last year, I have seen people at various stages of MND. It is quite scary and confronting.

These people living with MND are also incredibly inspiring. Each of these people are fighting for better services to help people with MND and I commend each one of them. The average life expectancy from diagnosis to death with MND is only 27 months. This motion recognises that MND SA is the only NGO in SA providing equipment and supports to more than 200 South Australians living with MND and their family carers. I am very grateful to the Premier who provided funding for equipment to MND SA last year.

This motion 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. After our motion last year, and my advocacy to the Premier and the Minister for Health, I have been informed that the Premier has lobbied the Hon. Stuart Robert MP, Minister for the National Disability Insurance Scheme, for more support. The minister has provided the Premier with an update following the Premier's advocacy for people with MND needing better and speedier support.

A letter from the federal minister says that, where there is evidence of rapid deterioration in functional capacity or an immediate risk to a person or others in the community, an access request is considered a priority and the access decision is now completed in three days. This prioritisation is compared to the legislative requirement of 21 days. The minister says that he has asked for the NDIA to focus on the timeliness of the planning process for people with MND. Further work is being done. The minister says he has also met with the peak MND body to discuss better access and planning. This is because we care so deeply about this issue and delivering better services, so I thank the Premier for taking this fight for better services up alongside MND SA.

This motion recognises that people with MND often die while waiting for a support package or a plan to be put in place or increased. This motion recognises the work that MND SA does to support the South Australian MND community on a tight budget, relying on fundraising, donations and bequests. Karen and the team are living angels. Every person with MND and their family tell me how much they value MND SA's work and support. I thank them all.

Their two major annual fundraisers have been impacted by COVID-19 and I encourage all members of the South Australian community, members in this house, and people who can afford it in my electorate to donate to MND SA if you can. It will make a tremendous difference to a South Australian's life. Karen Percival, the CEO of MND SA, asked me to emphasise these points today. People who are diagnosed with MND over the age of 65 are not eligible for the NDIS and they receive no NDIS funding because of their age. Their disability and needs are no less because they are over 65, but they are left to fall under the My Aged Care funding and they often die whilst waiting for their packages.

MND clients are amongst the high-risk category for COVID-19, for which there is no cure. Karen said, 'Look at how frightened we all are. Imagine the fear that clients with MND live with every day. There is also no known cure for MND.' She said that people with MND need support. They need our community support. They need equipment, which cost lots of money, to deal with the increase in this disability and the onset. MND SA is the only specialist organisation providing support for people affected by MND, yet they have limited resources. Karen has asked that we continue to support those affected by MND, regardless of age or postcode.

The cause of MND is not known, although around one in 10 cases are familial. You cannot catch MND from someone. MND usually starts slowly, sometimes starting on one side of the body and then spreading. Usually, the first things people notice are a weakness in their hands or grip, slurred speech, weakness in their legs, weakness in their shoulders making lifting difficult, and cramps and muscle twitching. Later on, people with MND have little or no movement, and they have trouble talking, breathing and swallowing.

Today, there is no cure. Doctors and others help people by easing symptoms and keeping them as mobile as possible, which is hard these days. Most people with MND die within two to three years of developing the condition. Today, I am so glad I got to speak because this is a call-out to my colleagues and the community to give to MND SA. A donation to MND Australia is a gift for over 200 South Australians currently living with MND, as well as their loved ones. Your donation will allow MND SA to provide care, support, knowledge and equipment, to influence policy, to provide trusted information and to raise awareness about MND.

You can also help by donating to the MND Research Institute of Australia (RIA). When you donate to MND RIA, you are assured that every dollar of your gift will be invested in research with the best chance of understanding the causes, developing effective treatments and finding a cure for MND. It is terrible enough to have MND; it is sad to know that many people living with MND and their carers, families and friends are now impacted by this pandemic. My heart goes out to each and every person living with MND, their families and each of the staff members at MND SA. I thank everyone for helping and I thank the South Australian community in anticipation of your important donations to MND SA.

I will continue to advocate for better services, along with my colleagues, and ask for my colleagues on both sides to support me and, hence, support these vulnerable members of our South Australian community. I commend this motion to the house.

Mr PICTON (Kaurna) (12:58): There is not a significant amount of time left for me to speak, but I would like to make a few brief comments now and continue them when we next discuss this matter. The opposition obviously supports this motion, supports people with MND and supports MND South Australia and its great work. The member for Wright has been doing a lot of work with MND South Australia, and I believe that when he is able to speak on this motion he may in fact have some amendments to strengthen it, particularly where we can further support MND South Australia and the work they do. I believe that they have been seeking support from the government for the past couple of years to make sure that they are properly funded and can provide that support.

In my short time now, our thoughts are with all people with MND in South Australia and their families, their loved ones and their carers. This is obviously a difficult time in terms of our response to the pandemic, which affects a whole range of other carers, clinicians and support workers in a range of other clinical areas as well, with MND being no exception. So we need to do everything we possibly can to support people to make sure that they are getting all the support they need. There have been difficulties with the NDIS that we have been trying to resolve. This is an area we need to work on to make sure that it improves.

Looking at the NDIS system, the bureaucratic logjams that were put in place for somebody suffering MND were significant. I seek leave to continue my remarks.

Leave granted; debate adjourned.

Sitting suspended from 13:00 to 14:00.