Monday, 10 September 2012

HISTORY MADE! Meniere's Disease & Meniere's Australia recognised by Australian Parliament

 “Although the disease which we discussed today was first discovered by the French physician Prosper Ménière in 1861, I dare say it’s been discussed and the name has been used in this chamber more in the last 30 minutes than it has been in the last 30 years.” - Mr Stephen Jones MP

© Parliament of Australia, 2012. For a Hansard transcript, go to:
NOTE: The debate has been adjourned until the next meeting. The Deputy Speaker fixed 9.30 a.m. on Wednesday, 12 September 2012 for the next meeting of the Federation Chamber. The vote will probably take place in the next sitting week which starts 9 October 2012.

READ the FULL HANSARD TRANSCRIPTS from the Australian Parliament debate on Meniere’s Disease

Last night, history was made in the Parliament of Australia with the discussion of Meniere's Disease & the recognition of Meniere's Australia by six members of the House of Representatives.

The debate was motioned by The Hon Bruce Billson 
MP and included discussion by Ms Jill Hall MP, Mr Craig Kelly MP, Mr Shayne Neumann MP, Mr Michael McCormack MP, and Mr Stephen Jones MP. We thank them all for giving Meniere's disease a voice in the Parliament of Australia.



The order of the day having been read for the resumption of the debate on the motion of Mr Billson That this House notes:

(1) the work of Meniere s Australia in developing and improving services in Australia for people living with the distressing consequences of Meniere s disease and other unseen vestibular disorders;

(2) that vertigo, dizziness, balance problems, hearing loss and tinnitus are common symptoms of Meniere s disease which lead to sudden debilitating attacks, loss of employment, social isolation and loss of confidence and personal capabilities in everyday living activities;

(3) that the exact number of people affected by vestibular disorders is not known as the conditions are under-diagnosed and under-reported;

(4) that the research from the United States of America indicates that up to five per cent of the population may be living with one or more vestibular conditions which translates to one million Australians; and

(5) that with more support, Meniere s Australia Support Groups would be able to provide much needed counselling, practical advice, information and peer support to both individuals and their families and carers (see item No. 2, Votes and Proceedings), 7:58:11 PM

Debate resumed.
Mr Billson, 7:58:24 PM, Ms Hall, 8:08:32 PM, Mr C. Kelly, 8:18:44 PM, Mr Neumann, 8:23:49 PM, Mr McCormack, 8:29:15 PM, Mr S. P. Jones, 8:34:19 PM
Debate adjourned, and the resumption of the debate made an order of the day for the next meeting, 8:39:41 PM.



00:14 to 09:30
The Hon Bruce Billson MP
Member for Dunkley, Victoria

Highlights from the Hon Bruce Billson’s speech:

“For those who are listening, particularly philanthropic organisations, or even those operating in the hearing loss area, some support for Meniere’s Australia would be a terrific measure.”

“It’s quite a frightening condition in that the attacks usually stem from around vertigo. I had the misfortune of an inner ear infection a few months ago… It’s very disturbing when one’s mobility is completely compromised. You’re not even sure whether you can lie still in bed with any great grace. So you can imagine people that suffer from this condition, and these quite debilitating symptoms regularly and what an enormous impact it must have on their quality of life.”

“Although it’s not life threatening, the disease can be life destroying. There’s a great deal of fear & uncertainty that may accompany the symptoms, and a sufferer may appear to be perfectly well then be unable to stand up straight…” 
“The anxiety that it provokes can be extraordinarily debilitating and create in itself its own sense of stress, suffering and helplessness; and this is why organisations like Meniere’s Australia are so crucial to steer sufferers and their families through what can be an extraordinarily horrendous time for them and a time of enormous adjustment.”

“Meniere’s disease actually falls between the cracks in the current health care system …there is a chronic illness component with the vertigo attacks and the vestibular impairment that’s not addressed well by these current health system arrangements.

09:31 to 19:42
Ms Jill Hall MP
Member for Shortland, New South Wales
Positions: Government Whip

Highlights from Ms Jill Hall’s speech:

“Meniere’s disease is one of those diseases that people know very little about, and it is one of those diseases that can actually take a person’s life away from them.”

“I actually have acquaintances, of three people, that have have suffered from Meniere’s disease, and that had all the symptoms and that’s the vertigo, the nausea and vomiting; and people don’t realise just how bad that can be. People cannot lift their head off the pillow because their Meniere’s disease is just so bad.”

“When you’re suffering from those symptoms and when you can have a severe attack at any moment, it’s really, it’s really debilitating.”

“One person that I saw having a very severe attack, it looked like they were having a seizure.”

“The same woman that I mentioned, that when I first saw her have an attack of her Meniere’s, she rarely leaves the house now I might say, her life has totally been taken from her. She doesn’t drive; she’s reliant on her partner for the basic sort of support within her house.”

“You lose control of your basic functions”.

“I don’t think that we can emphasise enough the debilitating effects of it… Meniere’s disease is one of those silent diseases that not many people are aware of.”
“The important fact is that it’s a chronic disease, it’s a life-long disease, it’s a very debilitating disease and there is absolutely no cure for it.”

“Meniere’s Australia needs to have the work that they do acknowledged, and I know the sufferers of Meniere’s disease rely, rely on Meniere’s Australia. I congratulate them on the fine work they do, and I think that the (serving?) of this disease is well and truly needed.”

19:43 to 24:51
Mr Craig Kelly MP
Member for Hughes, New South Wales

Seconds the motion.

Highlights from Mr Craig Kelly’s speech:

“A diagnosis of Meniere’s disease is not promising. Although Meniere’s won’t directly kill you, it is likely to make your life miserable in a way few other diseases can.”

“I can only think of a few situations more stressful and draining on one’s mental condition, than the combination of a droning (sound?) and a ringing noise inside your inner ear, and not knowing when you will lose control of your body, suffering an attack of vertigo, nausea & vomiting.”

“This motion is important to recognise, as this motion does, of the great work being done by the broader community to provide awareness, to provide much needed counselling, practical advice and information to both peer groups, individuals, families & their carers.”

“It’s medical research that has the potential to ease the pain, suffering & hardship of those suffered by Meniere’s disease.”

24:52 to 30:14
Mr Shayne Neumann MP
Member for Blair, Queensland

Highlights from Mr Shayne Neumann’s speech:

“I’m sure there are many people with Meniere’s disease amongst the 800,000 people we see on disability support pension in this country. Sadly it is not diagnosed as clearly and effectively as it should be.”

“Now Meniere’s Australia is a not-for-profit organisation, like so many we see in our electorates across the states & territories of Australia, who do great work in advising and informing people of this. Assisting people to understand & appreciate what these people suffer from. And many years ago there would have been tremendous misunderstanding of people who had this. People would have been accused of faking it, been accused with “What’s wrong with you”. But this is a real condition that affects a lot.”

“I commend the Member for Dunkley on this motion; I commend Meniere’s Australia for all the work they do in helping people across the country.”

30:15 to 35:21
Mr Michael McCormack MP
Member for Riverina, New South Wales

Highlights from Mr Michael McCormack’s speech:

“Meniere’s disease can see sufferers slip through the cracks of the health care system and not receive the treatment they so desperately need or deserve.”

“These types of issues associated with the disease can make a person feel isolated, frustrated, embarrassed and even difficult to cope with.”

“Here in Australia, best estimates are that there are 40,000 Australians with Meniere’s disease, with annual new cases of about 4,000.”

“Many sufferers with Meniere’s know that their vestibular disorders can experience social isolation and loss of confidence, which can evolve in problems with their employment, their relationships and catapult them into possible financial hardships and also difficulty within their families and personal lives.”

“One of Meniere’s Australia’s biggest challenges is making the community more aware of the issue, as would more support for Meniere’s Australia to their support groups would provide much needed counselling, practical advice, information, peer support by individuals, their families & their carers”.

“I commend the Member for Dunkley for bringing this important private members’ business for discussion in the parliament. This debate helps to raise awareness about Meniere’s and the umbrella group which is doing important work to combat the disease.”

35:22 to 40:40
Mr Stephen Jones MP
Member for Throsby, New South Wales

Highlights from Mr Stephen Jones’ speech:

“Although the disease which we discussed today was first discovered by the French physician Prosper Ménière in 1861, I dare say it’s been discussed and the name has been used in this chamber more in the last 30 minutes than it has been in the last 30 years. So I follow the honourable member in thanking the Member for Dunkley for bringing this important issue before the chamber, so we can discuss it, and hopefully add to the sum of understanding about the condition, which is probably more prevalent in the Australian community than many might think.”

“Most of them won’t of heard of it until they have a family member or a friend who is affected… Indeed I have a staff member who suffers from the disease, and I’ve watched how it has from time-to-time debilitated her, and severely impacted on her enjoyment of life and capacity to work.”

“For those witnessing attacks of vertigo it can be hard to understand what’s actually happening to the person in front of them. The symptoms are hard to understand and explain, even from those who are suffering from them.”

“The words, “I’m sorry I feel dizzy now & have to lie down”, can interrupt a business meeting, running daily errands or social outings.”

“Some people whose Meniere’s is triggered by bright lights, they can’t even enter a shopping centre or a supermarket.”

“I have a constituent in my electorate who has Stage 3 Meniere’s, and managing the disease completely dominates her life.”

“She’s been jeered at, as she’s staggered home along the road trying to get a safe resting place, by passers-by who mistakenly thought that she was drunk. The unfortunate consequences of the public awareness of the health issue being very low.”

DO YOU AGREE WITH WHAT WAS SAID IN THE DEBATE? Share your thoughts here...

@BruceBillsonMP @JillHallMP @CraigKellyMP  @ShayneNeumannMP + Michael McCormack & Stephen Jones. THANK YOU 4 giving #Meniere's a voice



    House of Reps motion on Meniere's disease & Meniere's Australia due to be voted on now. Watch it live...{346ACE26-7C89-4E56-B866-8DAD5437D4AD}&accept=true

  2. BREAKING NEWS! “The I’s have it” The motion on Meniere’s Disease put forth by Mr Billson has been agreed to by the Parliament of Australia.

  3. I make my entry from the state of Ohio, U.S.A. A hearty congratulations regarding the Australian Parliament's motion of recognition and corollary support. I'm 64 years old, and have suffered with Meniere's disease more intensely since 1999. It is the "invisible disability" and only recently recognized by the DAV (Disabled American Veterans). My wife understands what I daily experience better than any other earthling. May I add my personal tips to more recent sufferers? 1) find a doctor who will rigorously treat your symptoms without surgery--nanotechnology will soon help, so be patient; 2) stay active and build up your core body strength (reduces injuries), plus faithfully do an eye/head/body motion 6-8 week program; 3) if you have occasional objective vertigo with more constant subjective vertigo as I do, beware of barometric pressure changes, and other volatile atmospheric disturbances which do affect us (e.g., wind); 4) expect to make misjudgments, not only regarding proprioception issues (i.e., where your body parts are in space) but visual mistakes (e.g., in reading, putting down or picking up objects, and "watch-making" type skills); 5) understand the difference between true depression and expected ongoing bouts of frustration and grief over the loss of normal ear/balance functionality; 6) expect that when exposed to certain frequencies and high decibel sounds that the over stimulated cochlea will "spill over" to the labyrinth causing temporary balance disruptions and increased tinnitus; 7) in view of Meniere's learn to choose your social and physical activities wisely, and, expect "blow back" from fatigue to your eyes and motion/auditory nerve paths. Thus, adequate rest and a reduction of sodium and stress helps.// Perhaps someone in Australia can direct me in how to best approach our bureaucratic agencies here in becoming effective advocates. Currently, far more attention is given to cancer awareness, research, and curing agents (I've had skin cancer too).