Guy Barnett (Tasmania, Liberal Party) Share this | Link to this | Hansard source

I seek leave to move a motion in relation to the response from the Minister for Health and Ageing to the Senate resolution relating to Motor Neurone Disease Global Day.

Leave granted.

I move:

That the Senate take note of the document.

The document that has been tabled by the Minister for Health and Ageing, Nicola Roxon, is in response to a Senate motion that was agreed on 21 June this year. That motion was moved by me. I am happy to say that I have a vested interest in this matter, motor neurone disease. My father died of motor neurone disease back in 1985. My family have been involved with motor neurone disease ever since—my mother, Lady Sally Ferrall, in particular, and now my wife, Kate, who is on the committee in Tasmania.

There are many people in Australia who have motor neurone disease or who are affected in some way by this muscle-wasting disease. It is a very, very difficult situation for all those families who are affected. Approximately one person per day dies of motor neurone disease. It is very sad indeed. On average, life expectancy is about three years from diagnosis to the conclusion of one’s life.

The motion that was put and overwhelmingly passed by the Senate on 22 June—for which I am most grateful—came a day after Motor Neurone Disease Global Day, which was 21 June. That is the solstice. That is the time in the year when there is a turning, there is a change, and that is what we are seeking in the motor neurone disease community. We want to see change. We want to see research which will benefit sufferers. We want to identify research for a cure and we want action so that people with MND and their families can be better cared for.

The motion also identified the need for support, not just for research but in other ways, including disability support. I notice in this letter that has just been tabled by Minister Roxon that she has advised that the government have invested $74,000 in a website. They have provided that support to Motor Neurone Disease Australia. Of course I am thankful for that, on behalf of MND Australia, an association which I am close to. At this stage I want to commend Carol Birks, CEO of MND Australia, for her work. I commend her for her leadership there in that role, together with the board of MND Australia. I congratulate them on their advocacy.

But a website is not good enough. That is a small amount of money. The minister does refer to the funding provided for motor neurone disease research, through the National Health and Medical Research Council, of some $5.2 million in 2009-10. There is also $750,000 over the five years from 2006 to 2011. Frankly, that is a piddling amount of money. We could do so much more. The significant boost in 2009-10 is very much appreciated. There is a reference to the $4.9 million being spent on MND medications through the PBS, but that is not out of the ordinary. That is medication that is due to Australians who have a health condition through no fault of their own. I repeat that: through no fault of their own.

What is important is that there appears to be nothing in this letter from the minister that addresses the disability support scheme. That was particularly referred to in the Senate motion. If the minister or her office are listening, perhaps they could further advise the Senate on the disability support arrangements for this particular chronic disease. I know that letters have been written to the minister from the various associations and members around Australia. I want to read from the Senate motion which the minister has responded to in her letter tabled in the Senate today. The Senate motion read:

That the Senate—(a)   notes that:(i)   motor neurone disease (MND) Global Day on 21 June 2010 represents an important opportunity to acknowledge those around the world affected by MND,(ii)   in Australia alone, more than 1 400 people have MND and the disease takes the life of more than 10 Australians every week—

so more than one every day. The motion continued:

(iii)   there is no known cause in 90 per cent of cases, no cure and no effective treatment for MND, and

(iv)   the most pressing need for those affected by MND and their families includes easy and timely access to appropriate care and support, including access to aids, equipment and assistance with basic daily living such as mobility, communication, feeding and breathing to maintain independence and quality of life; and

(b)   calls on the Government to continue its funding for MND research and improving health and disability services for all those affected.

It seems to me that part (iv) of the motion has not been addressed in this letter. I see that Senator McLucas is in the chamber, and I draw this to her attention as well. What is important is:

… access to aids, equipment and assistance with basic daily living such as mobility, communication, feeding and breathing to maintain independence and quality of life …

This is an important issue for people with MND; let me make that very clear. There is an effort on the part of MND associations around Australia and those with MND and their families to say they need support. This need is as a result of people falling through the cracks between the federal provision and the state provision of health care. Obviously, the federal government is doing what it can and then the state government is doing what it can. I recently wrote to the relevant minister in Tasmania—in fact, the Greens member Nick McKim—on behalf of my constituents and I know that many others have as well. I want to put on the record my thanks to Tim Hynes, President of MND Tasmania, for what he is doing to advance the cause. He has a family member who is directly affected and he is taking a leadership role to try and make a difference.

But we need support in terms of aids, equipment and assistance for people with MND. It is very important. In terms of quality of life, I cannot tell you how important this is. It is very, very tough indeed for families who are affected by this disease. I call on the government to address this issue of support and provide assistance with mobility, communication, feeding and breathing to maintain independence and quality of life. I accept that there was a significant increase in research funding last financial year and I hope that that continues in the years ahead.

Before I conclude, I want to say very briefly that it has been an honour to host MND Australia here in Parliament House. It is great to have other federal members of parliament come and support people with MND and their families, and there were many in this past year and, again, last year and the year before that. So it has been an honour to be able to support them and advance the cause. But, clearly, there is a gap between federal and state government assistance in terms of access to appropriate health care.

In conclusion, I say to the minister: I note the letter and I thank you, but it clearly has not addressed part (iv) of the motion in my view. She may need to raise this at COAG or with her state and territory colleagues with responsibilities in the health or community services portfolios. There is still a lot more to be done, and as long as I have breath in my lungs I will do whatever I can to advocate for people with MND and their families all around Australia and all around the globe. I have been president of the association in Tasmania and on the national board, and I want to thank all the volunteers involved in the various associations for their work. It is a fantastic effort, I really thank them for it, and we will do what we can to assist. I thank the Senate.

Question agreed to.