Flu Season's Coming

Yesterday was ANZAC Day, which means a few things. (No, I'm not talking about the ANZACs or the families who would have preferred their sons and husbands to be coming home, rather than becoming legends.)

It means we're about midway through autumn, so the weather is about to get colder.

It also means it's time to get a flu shot.

The flu shot won't give you protection against every sniff and sniffle going around, but it will give you some resistance to the most kill-ey versions of the flu that are expected to come around this flu season.

For lupus patients (and patients with other immune-compromising diseases) can go to our doctors to get the flu vaccine for free, under the National Immunisation Program.

It's worth asking family to consider getting a flu shot as well.  Them being protected also helps us to be protected.  For family members who aren't covered by the Program, it's possible to get a flu shot fairly inexpensively from a pharmacy or a doctor's surgery.

Want to be part of the World Lupus Day activity on Sometimes, it is Lupus? Email iris@sometimesitislupus.com your first name, your country and the advice you would give someone newly diagnosed with lupus.

I'll put all of the advice together in a resource to be published on this blog on World Lupus Day, 10 May 2017.

Would you give $1 a month to support this blog?  You can become a patron for as little as $1 a month (up to any amount you choose.)  As a thank-you gift, I'll send you a free electronic copy of each new book I release.

www.patreon.com/IrisCarden

What AUST R and AUST L on your Medicines Mean.

A while ago, I did a post about the Therapeutic Goods Administration, and how it assesses the safety of therapeutic Goods.

Today, I want to talk a little more about the work of the TGA.

Any legally-available medications in Australia, will have somewhere on their packages either AUST R with a number or AUST L with a number.

You can take the number and search the TGA website to get details of the medication, and its makers and suppliers.

So what do these mean?

AUST R means the product is registered with the TGA.  This category includes all prescription medications and a lot of over-the-counter medications, and therapeutic devices.  These are drugs that can be dangerous if used incorrectly, and the manufacturers have had to prove to the TGA that the drugs work for the purpose they're intended for, and that the benefit of using them outweighs the risks involved. Extensive independent studies have to be produced to support the case for having a product registered.

AUST L means the product is listed with the TGA.  Listed products have to be made up of ingredients that have been proven to be basically harmless.  The TGA doesn't require manufacturers to provide evidence of what the drugs do in the particular combination of ingredients.  There is a caveats with AUST L being completely harmless - some things that on their own are safe, can react in bad ways with other things (eg your other medications). It's important to make sure you talk with your doctor or pharmacist about everything you're taking, in case two things really are dangerous together.  AUST L medications are not allowed to claim to be appropriate to treat major health issues (eg lupus, migraine, or anything else you would see a doctor for, unless it's an obvious thing, like a vitamin to treat a vitamin deficiency.)

When your doctor prescribes medication to treat lupus, they will be AUST R medications.

When you get a pain reliever or an antihistamine over the counter from your pharmacist, that will be an AUST R medication.

If your blood tests show you're deficient in a vitamin or mineral, eg B12 or calcium, your doctor might advise you to take those.  They will be AUST L medications.  Vitamins and minerals can be great for treating vitamin and mineral deficiencies.

You will probably find a mix of both AUST R and AUST L medications in your medicine drawer or cupboard.

If you find an AUST L medication that's listed as curing or treating lupus, or cancer, etc, contact the TGA - because that's going way beyond what they're allowed to say and way beyond what they are proven to do.

If you find a "medication" that doesn't have either AUST R or AUST L on it, inform the TGA, and do not under any circumstances use the product. It will be illegal, unproven, and possibly unsafe.



Reference: Therapeutic Goods Administration - Registered and Listed Medicines
Related Post: Assessing the Safety of Therapeutic Goods

Oh Poo!

I turned 50 this year.

In Australia, that's a significant milestone.

It means I can now send the government my poo, and not get in trouble for it.

I don't know how you feel about politics, but I often think having a pile of poo in Parliament House would not be much different to what we have. So I'm eager to contribute my fair share to the pile.

But apart from the delight in knowing that one can give the government poo, there's a serious side to this rite of passage.

Australians 50 and over get a request from the government to provide a sample of our poo, to test for bowel cancer.  I know lupus is quite enough and I don't need any cancers as well, but bowel cancer is very common among Australians.  (That probably says we eat too much junk food and too little fibre.)

My test pack arrived today.

It seems a fairly simple process.  Use the special paper to catch poo, a sample pick thing to pick it up and put it in a dated sealed test tube.  Refrigerate it, and repeat with another set of collection equipment a day or so later. Then put both samples, with a form giving my personal details, in the addressed envelope and send it away.

Clearly, it's not the most dignified of things to do.  On the other hand, if it catches bowel cancer early, it might saves some of the very many indignities of bowel cancer treatment. And all it will cost me is a bit of time, and a bit of politics, er, I mean, poo.

Please Write to your Local MP

Take a deep breath.  The election's over.  Now I want to start a letter-writing campaign, to try to make the government aware of issues that affect those of us with lupus and other chronic illnesses.  Let's do this with actual posted letters on paper, because they're a bit harder to ignore than emails and internet surveys.

Find your electorate in this list: http://www.aph.gov.au/Senators_and_Members/Members. Click on your electorate to find your local member.  Then click on your local member to find their address.

What are you writing in your letter?  Well feel free to put it in your own words, and add in any more information you feel is relevant, but this is a basic draft:



Dear .......,
Congratulations on your election (or re-election) to the seat of .......
As a member of the Australian Parliament, you may want to know about issues faced by Australians with serious chronic illnesses, such as lupus, fibromyalgia, and related conditions.
You may be aware that women are the fastest growing group of people becoming homeless, and one of the factors leading to homelessness in women is frequently chronic illness. 
Lupus causes pain, fatigue, cognitive dysfunction, arthritis, and organ failure. It does not discriminate about which organs to attack.  It is incurable, and eighty percent of the people who have it are women.
Many people who have lupus struggle on for years, trying to live a "normal" life, working full-time, providing for their families. There comes a time for many of us however, when that is no longer possible.
Chronic illness can place an inordinate pressure on relationships, and some marriages break up, leaving the patients being the only one supporting themselves, and sometimes children as well.
So what happens when the doctor says it's time to stop work? We apply for the Disability Support Pension.  Very few people with lupus actually get it. Many keep working full time and end up with organs failing, multiple hospitalisations, etc.
In the lead up to the election, disabled pensioners were demonised as a "burden on the economy", and the pension was tightened up so that about eighty-five percent of applicants for the DSP were refused.  That clearly means that even fewer people with serious chronic illnesses are being accepted.
What do you suppose happens to the lupus patients who are denied the DSP? Some struggle to continue to work full time - at great cost to their health.  Some drop to part-time work and struggle to survive on insufficient income. Some will end up on Newstart Allowance, and will have to keep applying for jobs they are not physically able to do, while struggling to pay rent and survive on the income they receive. Some try to support themselves with whatever arts or crafts work they do as therapy at home. Whatever happens, their rent or house payments aren't reduced. 
How can you help? You are one voice in the parliament that controls much of our lives.  You can promote easing up on the DSP for people with severe chronic illness.  Our doctors tell us to stop working for a reason. A test to see what we can do doesn't show the true picture.  Any of us can do most things a healthy person can do.  We can't do as many things in a day as a healthy person can do. Someone with lupus may be able to work or care for herself or himself and a home; but not be able to do both. Most of us prefer to work, and will work as long as possible, so when we apply for a DSP, it's necessary.
You can work towards reinstating the Chronic Illness Dental Scheme.  
You can object when people on the DSP are called things like a "burden on the economy." We didn't choose to get sick, and we don't try to be a burden on anyone.  (And remember parliamentarians don't have to be sick or at retirement age to get their pensions, so calling us a burden, when there are people quite able to work being paid much more is more than a little offensive.)
You can protect Medicare and the Pharmaceutical Benefits Scheme if they ever are under threat.
Thank you for your attention to this matter.
If you should want to know more about my condition, or how I manage to live with it, please contact me on .........
Yours faithfully,
.......

That's my version. Yours may be different.

The important thing is that our parliamentarians understand that living with a chronic illness is a major challenge, and those who can't work need to be supported.

Please write to your member of parliament, and please ask everyone you know to write as well.  (Healthy people might need to change some of the wording.)The more people who do,  the more likely politicians are to realise that this is important.

I'm sending to my local member, the Prime Minister, and all senators from my state. Please note in the comments who you've written to. (It doesn't matter if anyone gets several letters.)

Update: Important.
I've just discovered the list of senators on the Parliament House site was last updated before the election.  Please leave it a week or two before writing to Senators, so that you get the right people.  The Members of the House were updated since the election, so go ahead and contact them right now.

DSP Approvals Down to Fifteen Percent

Before the most recent changes to the Disability Support Pension, people with lupus already struggled to get Centrelink to understand the nature of our condition.

Many were rejected.  We can turn up for the assessment looking perfectly healthy.  It makes it look like our doctors exaggerating on our medical reports.

I have to say, I'm one of the lucky ones.  The assessor saw me on a really bad day, and I could barely stand. I didn't have much trouble.  It probably also helped that my superannuation fund had already decided to put me on its disability pension.

A number of lupies I know, didn't get off so well.  Most have been forced to try to work even though they really physically can't a lot of the time.

What's the result of the new rules been? The vast majority of people applying for a disability support pension have been rejected.  Since the current government's new changes have come in, only 15 percent of applications for DSP have been approved.

That's an absolute disaster for people with invisible illnesses/disabilities.

What can we do?

Well, we can vote on Saturday. Not that that will guarantee anything, but it can give some hope that change can happen.

Apart from that, if you've been rejected for the DSP, appeal. Get  your doctor to support you.  Go visit your federal member and insist they help you.  If your doctor backed you for a DSP application, they'll back you for an appeal.  If all else fails, go to your local newspaper and tell your story. I know fatigue's a big issue, but use every bit of energy you have to demand some attention.  Just don't ever give up. 

There's also the option to check if you are eligible for a different Centrelink Payment, such as Sickness Allowance.

And for those of us who are not currently applying for the DSP - it's a good idea to let our politicians know that we're sick of disabled people being demonised as a "burden on the economy."  We have a DSP for a reason, and it should be given to all the people who really need it.

(And if we're talking "burdens on the economy" shouldn't politicians get their super under the same conditions as everyone else gets ours? Pot-kettle anyone?)

Ask a Politician, Update

A little while ago, I asked you for questions you'd like to ask the various parties in the election.

I've sent the Liberals, Labor, Nationals and Greens the following email:

Hello, my name's Iris Carden and I write the blog sometimesitislupus.com.

I have a series of questions of interest to people with chronic illnesses, which I am providing to all the major political parties. I would like to be able to publish everyone's answers to these questions together to allow readers to compare easily.  Please tell me only what your party's position is, not what you believe is wrong with another party's position.

Would someone in your media department please get back to me with your party's responses by the 25th of June?


1. If  you were in government, what would the future of Medicare be? (Ie, would it be privatized? Would the freeze on rebates continue?)
2. Quite a number of people with lupus have been unable to gain Disability Pensions, despite their doctors being insistent that they should stop work. What would your government's position be on Disability Support Pension for people with chronic illness? (Particularly episodic illnesses, where the patient can appear fine one day, and be crippled with pain, fatigue, and mental confusion the next?)
3. Does your party support the idea of a renewed Chronic Illness Dental Scheme?
4. Do you plan any changes to the Pharmaceutical Benefits Scheme?
5. Is there any other message you would like to give to Australians living with serious chronic illnesses?

Thank you for your attention to this matter, I realize a blog will not rate as highly in your priorities as a major news outlet, but the community I write for is very interested in these matters (our lives, in fact, depend on them.)

Grace and peace
Iris Carden
iris@sometimesitislupus.com

Would you like to know what I've had back so far?  Everyone except the Nationals sent me an email acknowledging receipt of my email.  Labor has sent a further three emails asking for donations and inviting me to volunteer for them.

That's it so far.

I wonder if any of them will take the time to give me an answer to the questions?

Update 
10//6/16  That's now four emails from Labor asking me to donate or volunteer.
11/6/16 Now seven emails from Labor asking me to donate or volunteer.  No emails from any party answering my questions.
13/6/16 Now nine emails from Labor asking for money or work.  No emails from any party answering questions.
18/6/16 I can't be bothered counting any more.  Labor has continued sending me two emails a day (and an extra on one day when they asked permission to ring me about how I could volunteer.)  Still no answers to the actual questions.  

What would you ask a politician?

OK Lovely lupies, we have a Federal Election coming up on the second of July (oh you knew that?)

If you could ask any questions of the main political parties in the lead-up to the election, what would they be?  (I checked the AEC's list of current political parties and there's no way I'm going to try to contact all 20 or 30 of them.)

So here's the deal:



If you lovely lupies give me questions or issues you want to know what the parties plan to do if they get control, I will forward a list of questions to the major parties. (Every party would receive exactly the same questions, so that would hopefully help you compare answers.)

If they send me answers, I'll publish them ahead of the elections.

There's a couple of big "ifs" there.

So my question for you at the moment is, what questions do you have for them?

Issues I think might be of interest to people with chronic illness might include Medicare, the Pharmaceutical Benefit Scheme, the Disability Support Pension, just as a starting point to get you thinking.

You can give me your questions in the comments here or on social media.

Assessing the Safety of Therapeutic Goods

Do you ever wonder who is responsible for making sure medications and other therapeutic goods are safe?

This is a brief video by the Therapeutic Goods Administration on how they assess the therapeutic products they will approve for use in Australia.

Every therapeutic product (including the "natural" ones) is meant to cause changes in the body - which means that they all have risks as well as benefits.



When the TGA approves a product, that does not mean the product is "harmless" or is safe for non-approved uses.  It means that the benefits outweigh the risks for the particular purpose the product's been approved for.

The TGA keeps a register of every product it has approved for use in Australia, you can go to their website and search medications you are taking (both prescription and non-prescription) and find information about the product, including any recalls or other press releases, and often consumer safety information.

The internet's made the world a much smaller place, but beware of where you buy any medicines. If you buy from outside Australia, you may get a product the TGA hasn't approved, or may not be made to the specifications the TGA's approved, and it may even be an illegal import. (So it's possible to buy a medication that can both make you sick and make you party to an illegal activity.)

Oh, and if you do have a problem with a regulated product, make sure you (or your doctor on your behalf) report it to the TGA - that's vital information the TGA needs to keep doing its job properly.

Pathology Will Continue to be Bulk Billed

The Don't Kill Bulk Bill petition has
closed.

It's amazing what can happen in an election campaign.

The campaign's barely begun, and Prime Minister Malcolm Turnbull has announced that the Government's come to an agreement with pathology providers to allow pathology services to continue to be bulk billed, and no costs passed on to those of us who rely on the services.

The current government clearly didn't want this to become a major election issue.

I watched the announcement with interest, as it came in the middle of the first leaders' debate. The agreement was the pathologists was that the pathologists would absorb the extra cost, and in return the government would act to protect them from unfair rises in rent on pathology collection centres.

It's definitely a win for patients.

The government has said the cuts to the bulk billing incentive would save up to $650 million over four years.

Because of the agreement between the Government and Pathology Australia, the Don't Kill Bulk Bill petition has been closed.

Pathology Costs

http://www.dontkillbulkbill.com/

A little while ago, the Federal Government decided to stop paying the bulk billing incentive payment for pathology tests.

Without these payments, pathology services may be forced to pass on costs to the patients who require the services.

Stop and think a minute about all the blood tests and other pathology tests you regularly have.  If you have to pay for them upfront, what will that mean for you?

I know that one of the effects of lupus is that very many of us either can't work, or can't work full-time.  That means money is pretty tight for a lot of us.

What would happen if we couldn't afford our tests? Well, some people might not be properly diagnosed to begin with, but also lupies wouldn't have the ongoing checks on our disease activity and how well our drugs are controlling our condition.

I Don't Mean to be a Burden

If you watch the news some days, you might be forgiven for thinking that the Disability Support
Pension is overly-generous and given to far too many people.

Headlines like "Disability Support Pension Burden Hits $17bn This Year" do nothing to  make people think that perhaps people who need the pension are not getting it.

The idea that the DSP is out of control, and needs to be brought back into line, has been supported by three successive responsible ministers: Kevin Andrews, Scott Morrison, and now Christian Porter. Clearly with changes of minister, and even a change of Prime Minister, the Government's view on the DSP hasn't changed.

It is true that the number of people receiving the DSP has reached record levels.  It's also true that the actual population of Australia has reached record levels.  Add to that, that the retirement age (particularly for women) increased about a decade ago, so people have spent more time on the DSP before moving to the aged pension, and the increase is not all that dramatic.

The government has begun working on ways to reduce the cost of the DSP.  In the 2014 budget, DSP recipients under 35 had their ability to work reassessed. It was planned to remove as many people as possible from the pension.

The rules for qualifying for the DSP have been tightened up, to the point where a terminally ill man was refused the pension, on the grounds that he could recover and return to work.  The effort to save money by not granting the DSP has lead to the administrative cost of dealing with appeals.  Ten percent of appeals have resulted in the appellant receiving the DPS.

Long before these rules were tightened, I knew a number of lupies whose doctors insisted they stop work - but who Centrelink refused the DSP to.  This begs the question: when a lupie's own doctors and specialists say don't work, and the Government says you can't have DSP, how is the lupie meant to survive?

Another means of saving the government money has come from a new way the government assesses income from defined benefit superannuation funds when considering the amount of pension paid.  This affects both aged and disability pensions.

The rationale behind this was that some couples were getting $120,000 per year from defined benefit funds, yet were still able to collect a pension.  On the surface, that looks like a significant loophole to close - but not everyone on a defined benefit fund receives that kind of money.  I receive about $6000 a year from my superannuation fund, and that has been enough to cause my DSP to be reduced under the new assessment rules. My income hasn't gone down quite as much as some other people I know of, but it will mean a tightening of my personal budget. (My personal budget is going to be more stressed, because one of my regular medications is no longer subsidised under the Pharmaceutical Benefits Scheme. The drug, paracetamol, was cut from the scheme, because it's a cheap over-the-counter medication people take once a while for headaches and minor pain,  except when it's in the higher dosage everyday version for people with chronic pain.)

So the squeeze is on for people with all kinds of disabilities.  Getting a pension is getting harder and harder.  Keeping it isn't guaranteed. And if there's any "loopholes" out there that mean some people are getting more than their share, you can be sure it will be closed, even if it affects the people who weren't getting all that much anyway. 

I get it.  The DSP is a massive "burden" if you look at it in terms of dollars. But it's not just a matter of dollars.  It's a matter of vulnerable people, people who are sick and disabled, people who in general, didn't choose to be sick and disabled.  When did we cease to have value as human beings and just become a financial "burden"?

Oh, if you see a "tip jar" with a request for your loose change appear on this blog, you'll know why.

Ask And You May Receive

It's hard to ask for help.

I like to think I will eventually get to that whatever it is I hope to do. Unfortunately, incomplete projects are building up and building up all over the house and yard, and in my computer memory.

When we first moved here, my son had been taking time out from study, reassessing what he wanted to do.  He went with me to buy my mobility scooter, and he is the person who assembles it, and pulls it apart, to put it in and out of the car.  He brings the scooter battery in from the car to charge it up for me. He goes with me to doctors' appointments and remembers what things I have to do to follow-up when my brain fog's at its worst.  He makes sure I take my tablets on time.

But of course, he couldn't just stay home all the time, unless there was a way for him to have an income to do it.  As it turned out, there was.  With help from my GP, we applied for him to have a carer's payment. (There's a link below to help you find information on carer's payments at the Centrelink site.)

Sometimes I worry that it would be better for him to be studying or working, doing "normal" things for a young man, instead of spending all his time with his Mum.  But, at least for now, he's happy for helping me to be his "job".

Strangers in the shopping centre have told him how much they respect the work he does when he helps me out in the shops.  It may not been a career he would have chosen, but for now it's what he does, and he does it well.

I still potter around and do what I can, but anything that requires lifting or stretching, or anything I'm just too fatigued for, he takes over.

To top that off, we also applied for help from the state government's community care services.  I've been approved for one and a half hours per fortnight for help around the house.  That means we have someone come in and do the vacuuming and cleaning the bathroom and kitchen.  After the state government subsidy, I pay $5 per hour for that extra help.

(There's a link below to information for Queensland, but a quick web search should help you find your own state's equivalent.)

Because my daughter and her partner live upstairs, I was assessed as not needing help with the yard, because there are other able-bodied adults who could do the work.  If they weren't there, more help could have been provided for yard work as well.

There's a basic lesson here.

Managing with lupus can be hard.  It can be challenging, and just trying to do everyday things can be overwhelming. But you don't have to assume you have to do everything alone.

It's worth investigating what help is available in your area.  If you don't know where else to start looking, ask your GP what she (or he) can suggest.

Remember, you may not get approved for everything, but you won't get approved for anything if you never apply.  Ask, and you might just get the help you need.  





Further information:

Centrelink Carer Payment: http://www.humanservices.gov.au/customer/services/centrelink/carer-payment

Queensland Government Community Care Services: http://www.qld.gov.au/community/getting-support-health-social-issue/community-care-program/

If I Only Had A Brain

I picked up information about the NDIS rollout in Queensland.

Today, I went to the Fresh Futures Market at the Ipswich Showgrounds.

It was designed to showcase services in the local area for people with disabilities or mental illnesses.

Much of it was targeted for families with children who had disabilities, and for mental illnesses.

There wasn't a stand that promoted itself specifically for adults with a chronic illness who cope fairly well with most things but could do with a little help around the house and garden at times.

Maybe I was hoping for something too specific. Or maybe, it's available on a state government's internet site here, with extra things like home modifications here.

Perhaps there wasn't any need for the information to be there at all, as I know how to use the internet.

What there was a lot of, was information about preparing for the roll-out of the National Disability Insurance Scheme, which finally comes to Queensland in the middle of next year.

A quick look through tells me I know most of this information from the email newsletter the NDIS sends out, that I signed up for right at the beginning.  If you need information about the NDIS, and how it may or may not apply to you, try www.ndis.gov.au, sign up for the newsletter, and see what organisations in your area are helping people prepare for the roll-out.

Keeping a brain on my desk, just in case I need one.

The final thing, I wanted to mention, for those of you who've followed my adventures in brain fog, is that a nice lady at the Anglicare stand gave me a brain.  It's a stressball type thing. My son and I both found it very funny, a brain frequently being the thing I most wish I had. (And to tell the truth, most of the stress in my life comes from my brain not functioning at times when I most need it.)

So now, there's a brain sitting on my desk.  Just in case I ever need one.

Disability Support and Lupus

Right at the moment, there's a lot of discussion going on over the review of the Welfare system here in Australia.

There's a 176 page report available. (You can see a copy of it on the ABC news story about it.) There was a time I would have been able to read it, translate and summarize it for you.  That was before lupus brain fog.  Now, I'm settling for reading and watching news and making as much sense as I can of what journalists have already read and interpreted. (In research, that's called using secondary sources instead of primary sources, which is of limited value, but let's make do for now.)

One of the things being talked about is the Disability Support Pension.  According to news reports, the report is recommending simplifying all Centrelink Payments (which I'm sure nobody would argue with.) But it's also recommending moving a number of people off the DSP if they are determined to be not permanently disabled.  People would be on other benefits the same as job seekers, and would be expected to be looking for work.

For the most part, there seems to be some awareness of the reality of disability, but what shocked me, was seeing a copy of the Courier Mail in a shop, and seeing this headline glaring from the front page:

Disabling rorters: Planned Disability Pension Scheme overhaul could force thousands of Australians into workforce

You can read the Courier Mail's whole story (on-line version) here.

I guess you can tell what I'm objecting to here.  There's some kind of assumption that people on welfare are all part of a scam. We're taking advantage of the workers.  Even the Federal Treasurer Joe Hockey, when talking about the need for welfare reform said that Australian workers were working one month of every year to support welfare recipients.

Was that designed to make everyone with a job resent those of us who can't work?  My guess is yes, it was.

So what's the reality here?

I've worked part-time for a while since I began receiving the DSP. (And of course, the DSP was reduced accordingly for that period of time.)  Then my cognitive dysfunction (brain fog) became worse, and it reached a point where I just couldn't work.

I can write, because I do it at times when my mind is working. Having an actual job would require me to have a functioning brain at set times.... something I can't guarantee.  I can't even guarantee a functioning body at a set time.

In a sense, I am doing very well. I did get approved for the DSP.

  I know of other lupies who have been refused DSP, even though their doctors have told them they can't work. They're left in limbo.  As far as their doctors are concerned, they're too disabled to work. As far as Centrelink is concerned, they haven't proved themselves disabled enough to stop work.  Some of them are going without their medication because they just can't afford it. Going without medication will mean they get sicker. Eventually that will lead to extra costs in the healthcare system - which will prove to be a false economy for the government.

I won't write a response to the report and send it in to my local member of parliament.  My brain just won't do anything that difficult any more. But I hope people who are healthier than I am will.


Further information.
ABC News: Blueprint for overhaul of welfare system recommends simplifying payments, extending income management.
Courier Mail: Disabling rorters: planned Disability Pension scheme overhaul could force thousands of Australians into the workforce.
Sydney Morning Herald: Thousands to lose Disability Support Pension under changes flagged by government.

Unknown Future for the National Disability Insurance Scheme

Not all that long ago, the then Prime Minister Julia Gillard, announced the start of the National Disability Insurance Scheme (also known as Disability Care Australia).

It supposedly had wholehearted support from both sides of Parliament.

So, as it began to be rolled out, lots of people who have disabilities caused by lupus, along with all the many Australians who have disabilities from other causes, were waiting to see just what this new program would provide.

Well, politics is a strange business.  What a party believed in opposition may not be exactly the same as they believe in Government.

The new Treasurer, Joe Hockey has announced an intention to scale back or abolish the agency which manages the NDIS. Mr Hockey has said the work of the NDIS could be managed by the government owned private health insurance company, Medibank Private.  He's also indicated an intention to privatise Medibank Private.

I can't read minds, so I can't tell you why the new government would do this.  I can give you some possibilities:  A. the government genuinely believes this will give the best outcome for Australians with disabilities; B. the government wants to make disability someone else's problem and so is handing it over to private enterprise; C. the government wants to save money at all costs and thinks a good way to do it is to take money away from disability services; or D. the government would like to undo anything really good the previous government did so that voters will forget about it or think it failed.

As I said, I can't tell you exactly what the government is thinking, but it is interesting to note that there is no cabinet position representing people with disabilities.


Whatever the motive, if you object to this behaviour, and would like to say so, here is how to contact Mr Hockey directly:

Hon Joe Hockey
Treasurer
PO Box 6022
House of Representatives
Parliament House
Canberra ACT 2600

Or email: J.Hockey.MP@aph.gov.au

The opposition (former government) does still have a Shadow Spokesperson for Disability. It's Jenny Macklin, who sent out an email yesterday on the issue.

She said: "I know that for many of you, the NDIS has been a long time coming. I also know that with the implementation of the NDIS you will now receive the care and support that you have always wanted.

"This has been a hard fight for many of you, but we now have a scheme that ensures Australians with disability aren’t treated like second class citizens anymore.

"We cannot let the Government take this away."





Previous post on NDIS/DisabilityCare Australia: http://www.sometimesitislupus.com/2013/05/will-disabilitycare-australia-cover.html

E Health Record

I've just started setting up my eHealth Record.

The theory of this is that the patient gets to control what information is being shared and who it is shared with. It's a way for all medical professionals, with the patient's permission, to access the same record of information about a patient's health, and treatment.

Have you ever got frustrated with doctors who didn't seem to be on the same page? This is supposed to help with that. In theory, if all they keep track of your eHealth record, they all should have an overall picture of your health.

Do you worry that if you're admitted to a hospital in an emergency, you won't be able to give the hospital vital information about your condition, your allergies, medication, treatment, etc?  As long as you have your Medicare card, then a hospital should be able to get to your necessary information in an emergency.

This should be accessible to all hospitals, public or private,  and medical professionals throughout the country, so if you're in another part of Australia on holiday, your eHealth record goes with you.

So what do you need to set it up?

You'll need your Medicare card.

Then go to the eHealth site and follow the instructions.

You may be prompted to set up a MyGov account.  (If you are on a disability pension or other Centrelink payment you may already have one.)

MyGov links all of your federal government on-line services together, to save having to log into each one separately.

You may also be prompted to set up a Medicare Online account.

After that has all been set up, you will be able to go into your eHealth account, and add in your own information on current medications (including non-prescription over-the-counter medications, allergies, contact information, etc.)

Then, next time you see each of your doctors, talk to them about your eHealth record, about what needs to go on it, and who needs to be given access.

For more information on how the eHealth record will help manage chronic illness go to: http://www.ehealth.gov.au/internet/ehealth/publishing.nsf/Content/brochure-chronic.

Will DisabilityCare Australia Cover Lupus?

I've had a response to my request for information on whether the National Disability Insurance Scheme, now named DisabilityCare Australia, will support people with lupus.

It's a definite "maybe". DisabilityCare Australia is aimed at supporting people with severe disabilities, so whether, and how much, it will support anyone is decided on a case-by-case basis.

A spokesperson from the Department of Families, Housing, Community Services and Indigenous Affairs said: "Eligibility for support will not be defined by diagnosis of a particular disability but by an assessment of an individual’s capacity and their need for care and support and whether the person’s needs are best met by DisabilityCare Australia and not more appropriately met by other systems, such as the health care system.

"There isn’t a list of who is in and who is out because the scheme is designed to be about what an individual can do and what they need to function.

"Likewise, the support provided through DisabilityCare will be based on an individual’s needs.

"DisabilityCare Australia staff will work closely with people with disability participating in the scheme to develop a personal plan that funds reasonable and necessary supports to meet their needs, goals and aspirations taking. In deciding what supports are reasonable and necessary to fund, consideration will be given as to what supports other systems such as the health system might more appropriately provide to the person."

The scheme is being rolled out gradually throughout Australia, beginning with selected regions of New South Wales, Victoria, South Australia and Tasmania.  Next year, it will be starting in the Australian Capital Territory and the Northern Territory.

It will be rolled out across Queensland by 2019.

For more information on DisabilityCare Australia, go to the NDIS website: http://www.ndis.gov.au/.

Other government supports which may help people with lupus are listed in my earlier post: Support for Chronic Illness.


Video: Prime Minister Julia Gillard announces launch of DisabilityCare Australia

Queensland Government gives $1.25 Million to Research

So thrilled when the following media release was forwarded on to me.

The State Government has given $1.25 million to an arthritis researcher who is working on Rheumatoid Arthritis (RA) and tuberculosis (TB).

Hopefully advances in understanding RA will also help people with lupus and other forms of arthritis.

Following on from the recent decision to join in with the rest of the country in Disability Services Australia, this government is starting to look like it might actually care. (Of course, there have also been cut-backs in Queensland Health, but we can't have everything.)

I'm reproducing the media release in full (not the kind of thing I used to do as a journalist) because this is something I think is quite important to all of us.

JOINT STATEMENT Premier The Honourable Campbell Newman Minister for Science, Information Technology, Innovation and the Arts The Honourable Ian Walker

Premier’s Science Fellow to help arthritis sufferers An expert on genes that increase the risk of common human diseases was today awarded the Queensland Premier’s top science prize. Professor Matthew Brown from the University of Queensland Diamantina Institute was awarded the prestigious $1.25 million Premier’s Science Fellowship to advance the diagnosis and treatment of rheumatoid arthritis and tuberculosis (TB). Premier Campbell Newman congratulated Professor Brown on his award and thanked him for his remarkable work that was positioning Queensland as a global leader in genetic research and diagnostic testing. “This Fellowship allows Professor Brown to progress his gene-mapping research in ways that will benefit not only our health but also Queensland industry,” Mr Newman said. “He already has three patents for tests to diagnose a related condition, ankylosing spondylitis (AS)—a severe type of arthritis affecting more than 80,000 Australians—and his genetic findings have led to trials of new treatments for AS.  “Over the next five years Professor Brown will use the fellowship to identify the genes underlying the causes of rheumatoid arthritis and tuberculosis and develop better diagnostic tests to screen for them.” Professor Brown said it was a great honour to win the Premier’s Science Fellowship. Professor Brown trained as a physician specialising in rheumatology but was unhappy with the limited treatments he could offer patients so he switched from clinical practice to researching the condition. “The techniques we are developing have real commercial possibilities and healthcare benefits. We expect to roll out affordable diagnostic tests within five years, paving the way for new treatments targeting the root cause of the diseases,” Professor Brown said. “Rheumatoid arthritis affects 2.5 per cent of Queenslanders and more than 513,000 Australians and there are no treatments to prevent the disease or induce remission.  “The increasing incidence of tuberculosis is also a concern, particularly the cases of multidrug resistant TB arriving in Queensland from Papua New Guinea and the Torres Strait islands.” The Queensland Government’s $1.25 million investment, which is matched by The University of Queensland, reinforces the government’s commitment to working with universities to support scientific research that delivers real benefits to the community. [ENDS] 16 May 2013

Support for Chronic Illnesses

It may be a while before we find out what (if any) services are available to people who are disabled by lupus
and other chronic illnesses under the new Disability Services Australia legislation.  So, I thought it might be good to have a wrap-up of what Government support is already available.

Income Support

For those of us who can't work because of lupus, a Disability Support Pension is available (but if you have a partner who earns too much, you can't get this.)

The amount of pension paid is reduced for people who have other sources of income. So it's possible to work part-time (up to 12 hours per week), and still receive a part-pension.

Even a part-pension has the benefit of a Pension card. A Pension card can help gain all sorts of concessions on medical and other services as well.

For those who do have incomes, but low incomes, a Health Care card can make some medical and related services, and Pharmaceutical Benefits Scheme (PBS) medications cheaper.

Medical and Allied Health Services

Many doctors will bulk bill Medicare for services for people on Pension or Health Care cards. If your doctor doesn't bulk bill, the Medicare rebate will be higher.

For those who don't have a concession card, there is a Medicare Safety Net.  After a family has spent a set amount (the amount changes from year to year), the Safety Net cuts in and a number of medical services will be cheaper for the rest of the year.

People with chronic illnesses will be able to get some Allied Health services paid for by Medicare. Discuss a GP Management plan with your General Practitioner.  Your doctor can refer you to up to two allied health professionals, with Medicare assistance, under a Team Care Agreement as part of managing your condition. (There is a limit of five allied health services/appointments per year under this program, and sometimes there will be a small out-of-pocket fee.)

Medication

Medication is always expensive for people with lupus.

In Australia, the Pharmaceutical Benefits Scheme limits the upper cost of most prescription medications. Those of us with Pension cards or Health Care cards, have an extra discount, bringing the cost of each medication to a bit over $5.00.

Like Medicare, the PBS has a Safety Net.  After a set number of prescriptions for a family, people on concession cards get their PBS medications free - and people without concession cards will have their cost of medications reduced to the concession level.

If you take more than 12 medications, you may be eligible to have a free Med Check - ie your pharmacist can do a review of your medications, how they're taken, etc.  Not all pharmacists do this.



References:

Australian Government Department of Health and Ageing Chronic Disease Management Medicare Items: http://www.health.gov.au/internet/main/publishing.nsf/Content/mbsprimarycare-factsheet-chronicdisease.htm

Australian Government Department of Human Services Chronic Disease Management Plan: http://www.humanservices.gov.au/customer/services/medicare/chronic-disease-management-plan

Australian Government Department of Human Services Concession and Health Care Cards: http://www.humanservices.gov.au/customer/subjects/concession-and-health-care-cards

Australian Government Department of Human Services Chronic Medical Condition Assistance: http://www.humanservices.gov.au/customer/subjects/chronic-medical-condition-assistance

Australian Government Department of Human Services Disability Support Pension: http://www.humanservices.gov.au/customer/services/centrelink/disability-support-pension

Australian Government Department of Human Services Medicare Safety Net: http://www.humanservices.gov.au/customer/services/medicare/medicare-safety-net

Australian Government Department of Human Services MedsCheck Program: http://www.humanservices.gov.au/customer/services/medicare/medscheck-program

Australian Government Department of Human Services Pharmaceutical Benefits Scheme: http://www.humanservices.gov.au/customer/services/medicare/pharmaceutical-benefits-scheme

Budget Night

Here in Australia, it's Federal Budget night.  So I've been glued to the television, watching to see how the government's financial plan will affect lupies.

I'm not an economic analyst, and I don't have a crystal ball, so upfront let me say I don't know exactly how these things are going to affect us, but a few things in the Treasurer Wayne Swan's speech presenting the budget stood out to me as having a potential impact on us.

You can get the full details of the budget here.

The two big things for us, should be the establishment of DisabilityCare Australia, and the National Health Reform Agreement.

On the downside, a lot of health funding is being targeted especially at cancer research and care and treatment, so autoimmune diseases are the poor neighbours yet again. Hundreds of million of healthcare dollars will be specifically for cancers. (Mr Swan talked about his own experience with cancer. Maybe we need a senior politician to have their life threatened by lupus or another autoimmune disease.)

A potential downside for lupies who are still in the workforce, is that this budget will phase out the net medical expense tax offset (tax reductions for spending more than $2000 in the year on medical expenses.) At the same time, the point at which the Medicare Safety Net cuts in, increases from $1221.90 to $2000.

Relevant sections of Mr Swan's speech are included below:

DisabilityCare Australia

The Australian Government will provide $19.3 billion over seven years from 2012‑13 to roll out DisabilityCare Australia across the country. This brings this Government's total new investment in DisabilityCare Australia to $14.3 billion over the period.

This investment in DisabilityCare will ensure all Australians with significant and permanent disability get the support they need. This is compared to the current approach where limited funds are rationed and people who get funding often have to accept a one‑size‑fits all approach.

Rigorous assessments will be conducted to ensure funds are targeted where they are needed most.

Core principles

DisabilityCare Australia will look beyond immediate need, and will focus on what is required across a person's lifetime. At its core will be:

A Lifetime approach — as funding is long term and sustainable, people with disability will have peace of mind that the individualised support they receive will change as their needs change;

Choice and control — people choose how they get support and have control over when, where and how they receive it, including the option of managing their supports themselves;

Social and economic participation — overall life goals for participation will be a central focus of supports; and

Focus on early intervention —# the scheme will invest in people to maximise their independence.

Sustainable funding

From 1 July 2014 the Government will raise the Medicare levy by half a percentage point to provide a strong and enduring funding stream for DisabilityCare Australia.

This will raise $20.4 billion between 2014‑15 and 2018‑19, to be spent on DisabilityCare Australia. The States and Territories will also contribute to DisabilityCare Australia, and will be allocated $9.7 billion over ten years from the increase in Medicare levy revenue.

DisabilityCare Australia will be fully funded.

DisabilityCare Australia launch

DisabilityCare Australia will commence operations from July 2013 across four jurisdictions and from July 2014 in a further two jurisdictions.

Launch locations will be established in the Hunter region of New South Wales, the Barwon region of Victoria, in South Australia for young children and in Tasmania for young adults from July 2013, and in the Barkly region of the Northern Territory and the Australian Capital Territory from July 2014.

National roll out

The Australian Government is committed to the full national roll out of DisabilityCare Australia in 2018‑19.

The Government will provide funding of $11.7 billion to DisabilityCare Australia in 2019‑20, the first year after full national rollout.

New South Wales was the first jurisdiction to commit to full scheme, followed by South Australia, the Australian Capital Territory, Tasmania, Victoria, Queensland and the Northern Territory.

The roll out of DisabilityCare Australia in these jurisdictions will cover around 90 per cent of the total Australian population.

The Government will continue to work with Western Australia to achieve national coverage by the end of 2018‑19.

The Government has taken action to address the challenges facing our health care system including an ageing population and rising health care costs.

Access to new medicines

We are investing a further $691 million over five years in new medicines in the PBS, including ground-breaking drugs for the treatment of chronic nerve pain, chronic hepatitis C and Parkinson's disease.

The Government has realised savings from the price disclosure reforms to the Pharmaceutical Benefits Scheme (PBS) agreed with industry in 2010. This has increased capacity to fund new and innovative drugs.

Better healthcare

The Government is investing a further $2.2 billion in the Medicare Benefits Schedule across five years with a higher than expected number of Australians visiting doctors. In addition a further $33.8 million is being invested into the General Practice Rural Incentive program in 2013‑14 to encourage medical practitioners to move to regional and remote communities.

An additional $2.2 billion over four years will go to assisting individuals and families to meet the cost of private health insurance through the private health insurance rebate. A further 120,000 people have taken up private health insurance cover from July to December last year

In 2012, the Government announced funding of $4.1 billion to improve access to dental services and boost the dental workforce, including $2.7 billion for a Child Dental Benefits SchemeGrow up Smiling.

Historic national health reform

In 2011, the Government and all States and Territories signed the historic $16.4 billionNational Health Reform Agreement. These reforms are critical to preserving Medicare and universal healthcare in Australia.

Improving cancer care

In this Budget, the Government is investing a further $226 million to deliver world leading cancer care for Australians.

The Budget provides $18.5 million over four years to fund the new Australian Prostate Cancer Research Centre, as well as support the two existing Research Centres.

The Budget delivers $42.1 million over four years in funding for bone marrow transplants and for the Youth Cancer Network program run by CanTeen, providing access to life-saving medical procedures and necessary support services for people living with cancer.

The Government will also invest $5.9 million over four years to improve the treatment and outcomes for people affected by lung cancer.

Recognising that smoking is a major cause of cancer, the Government has taken ground-breaking steps to introduce plain packaging of tobacco products. This Budget includes funding for the enforcement of plain packaging.

Early detection

The Government has also committed $92.2 million over four years to expand the target age range for the BreastScreen Australia Program and to continue funding the processing of Pap smears for early detection of cervical cancer.

Bowel cancer screening will also be funded with an additional $16.1 million over four years, which builds on previous investments in this area.

An additional $29.6 million in 2012‑13 and 2013‑14 will be provided to support the dispensing of chemotherapy medicines to ensure the supply of these drugs to patients.

Improvements in cancer care will also flow from additional funding for national cancer data collection which started in 2009‑10. These initiatives build on the $1.1 billion invested by the National Health and Medical Research Council in cancer research since 2007.

Reference: 2013-14 Commonwealth Budget http://www.budget.gov.au/2013-14/index.htm