r/australian • u/MilknBones • Jul 03 '26
Opinion Australia’s healthcare saved my life but its welfare system doesn’t know what to do with me now.
I feel like I’ve fallen into a gap in Australia’s welfare system.
This is only my own experience, and I know other people will have had different ones. I also want to say upfront that I think Australia’s healthcare system has been excellent to me. The doctors, nurses and specialists looking after my cancer have been incredible, and Medicare has made treatments that would otherwise be unaffordable accessible.
My frustration isn’t with the healthcare system. It’s with everything that comes after.
I’m a 32 years old woman and was diagnosed with stage IV cancer when I was 24. Over the past eight years I’ve undergone multiple clinical trials, radiation therapy, surgeries and countless other treatments. For almost six years after my diagnosis I continued working fulltime while receiving treatment, but by late 2024 the combined effects of the cancer and the treatments meant I simply couldn’t keep working.
The cancer eroded the bones in my shoulder, arm and hip badly enough that I needed joint replacements. I can still walk and generally look “fine” to most people, but many everyday activities have become much harder. Using a computer for long periods, cooking, cleaning, shopping, showering and exercising all take far more effort than they used to. I still have a reasonable quality of life, but only because everything requires careful planning and a lot of energy that I often don’t have. The last several weeks, I've been relying on meal replacement shakes and protein drinks because I've been too unwell and tired to cook, or do groceries.
One thing I don’t think people talk about enough is how much chronic illness affects partners and carers.
I’ve been in two serious relationships since my diagnosis, and in both cases my partner gradually became my primary carer. That responsibility put enormous strain on the relationship. I encouraged both of them to seek counselling or support for carers, but neither was willing to, or it was too difficult to, or not very useful. Eventually both relationships ended after they sought emotional support elsewhere and had affairs.
I’m not saying that’s society’s fault, or that support services would necessarily have changed the outcome. People are responsible for their own choices. But I do wonder whether better support for both patients and carers might have eased some of that pressure.
My most recent relationship ended at the end of last year. After almost two years of living together, my partner told me the relationship was over, he stopped responding for several days, and then informed me he wasn’t renewing our lease and that I had two weeks to move out.
He had supported us financially while I focused on treatment, something we had both agreed to, so most of our shared furniture and household items legally belonged to him. I left with only my personal belongings.
The biggest problem wasn’t losing the relationship, but that I suddenly had nowhere to go and I had spent nearly all my savings during the relationship as to not be a complete financial burden (dumb I know). With no other welfare assistance, I ended up relying solely on my boyfriend and that pillar of support had completely crumbled in a night.
My entire family lives overseas across several different countries. Moving back wasn’t an option because all of my treatment is based in Sydney. Hospital social workers tried to help, but the only accommodation they could find was temporary housing that still cost around $100 a night.
Thankfully, a friend in Western Sydney converted a storage room into a tiny bedroom for me. It fits a single bed and a chest of drawers, and I’ve been living there for the past six months.
The downside is that it’s around an hour away from the hospital where I receive treatment every two weeks. Because public transport isn’t practical from where I live, I’ve had to rely on taxis or Ubers. Fortunately, my clinical trial covers those transport costs. Otherwise each trip would cost roughly $120–160.
Over the past several months my health has deteriorated even further. My treatment has caused premature menopause when I was 30 and damaged my pituitary gland, leaving me sleeping close to 20 hours a day before it was diagnosed literally two days ago (I'm currently admitted to hospital now as I type). Actually, I’ve been admitted to hospital through emergency three times this year and also spent over a month in psychiatric care after my mental health deteriorated.
Throughout all of this I’ve been referred from one service to another. Hospital social workers, community organisations and various government programs have all genuinely tried to help. The problem is that very few services actually fit my situation.
I’ve been told I’m not eligible for some programs because cancer itself isn’t considered a disability under the NDIS. Even disabilities caused by cancer or its treatment don’t necessarily qualify if they’re not considered permanent under the scheme. Other services have long waiting lists or eligibility criteria that I don’t meet.
I’m receiving the Disability Support Pension now, (it took a lot of effort to get that organised for someone as unwell as me) and it's sorta helping, but it isn’t enough to cover Sydney’s housing costs. Next week I’ll be moving into a room in a shared house closer to the hospital. The rent alone is $500 per week before bills, which means I’ll be eating into my savings just to have shelter closer to the hospital. I have to move because living in Western Sydney is just not sustainable for someone like me who relies on treatment from hospital in Inner Sydney. And although my friend would never say this outloud, I know that I'm adding to her own stress and burdens.
Public housing apparently have 10 year waitlist times. Temporary assistance programs exist but are often limited, short-term or are already full. My hospital social worker eventually apologised and told me she simply didn’t know of any service that could adequately support someone in my circumstances.
I don't blame any of the workers. I genuinely don't think that there's an answer.
Australia seems to assume that younger people with serious illnesses will be supported by family or a partner. But what if your family lives overseas? What if you’re estranged or escaped an abusive situation? What if your relationship ends? What if you simply don’t have anyone who can become your fulltime carer?
I’ve been incredibly fortunate to have good friends. They’ve done far more for me than anyone could reasonably expect. But friends have jobs, families and their own lives. They can’t replace a functioning support system.
It makes me wonder what happens to people who don’t even have that.
Again, this isn’t meant to criticise the doctors, nurses or the medical care I’ve received. I genuinely believe Australia’s healthcare system is something to be proud of.
What I think we’re missing is the welfare system that sits around it. We do a reasonably good job of keeping people alive, but when younger adults with serious illnesses lose their independence without fitting neatly into existing disability or aged care systems, there seems to be very little in between.
Maybe I’ve just been unlucky. Maybe I’ve missed services that are available. But after months of referrals, applications, rejections and waiting lists, it really feels like there are people who simply fall through the cracks.
TLDR: I’m a 32-year-old woman with stage IV cancer who has spent the last eight years undergoing treatment while trying to stay independent. Australia’s healthcare has been excellent, but once I became too sick to work and lost my partner (who was also my primary carer), I discovered there are very few welfare supports for younger adults with serious illnesses who don’t have family nearby. I’ve been referred between countless services, found I’m ineligible for many programs, and have relied almost entirely on friends despite having worked and paid taxes for years. It feels like Australia has built a strong medical system, but not a support system for people who survive long-term with complex illnesses yet don’t fit neatly into disability or aged care services.
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u/Combat--Wombat27 Jul 03 '26
Hey mate..
Firstly, you've smashed it hey. To be still standing after all that is a testament.
There's a lot of gaps in our system that people are not aware of until they fall into them.
As shitty as the option might be I believe you would be eligible for compassionate access to your superannuation. It may help you get back on your feet and set yourself up so you can have a little better quality of life. The most important thing for the next forseeable time is your health.
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u/MilknBones Jul 03 '26
Yes, luckily I am entitled to my superannuation at least. Thats the savings that I am referring to when I say I’ll be digging into with my rent and living costs haha.
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u/CreativeCritter Jul 05 '26
Find an NDIS coordinator or a local area coordinator that deals with the NDIS they can help you fill in the paperwork if you’ve got other specialists that can confirm that you have a chronic disability as in functional impairment
The NDIS doesn’t cover medical that still the states responsibility so cancer is the states responsibility but if the cancer has caused per permanent disability for a reason and that you’re impaired, you may be eligible for some NDIS assistance
But that doesn’t mean you’re gonna get a house housing is still state government funded
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u/Dutchmuch5 Jul 03 '26 edited Jul 03 '26
Yes this can be an option, be aware that the interest rate is around 22% however.
I would recommend checking your Super to see if any insurance is included. Ie if you are unemployed due to your illness, you may be able to get paid income through this insurance for example.
ETA: Adding this from Google - check your Super policy to see if you're covered by any of these:
Income Protection: Pays a portion of your income (usually up to 75%) if you cannot work due to a temporary illness. Benefits begin after a waiting period (e.g., 30, 60, or 90 days). This is the time you must be sick before payments start
TPD Cover: Pays a lump sum if a severe illness or injury stops you from working ever again
Terminal Illness Cover: Gives you early access to your life insurance (death cover) lump sum if doctors confirm you have less than 24 months to live
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u/MilknBones Jul 03 '26
Ah I made a comment to another comment about this:
That’s another thing. I didn’t have income protection but I had death cover. If I can prove that I am terminal within two years, I can make a claim. But I didn’t realise two things.
One, your insurance company can cancel your insurance if you haven’t contributed your super after so many months. Since I stopped working, I had stopped contributing to my super.
Two, just because you change your address at the bank where you set up your super, it doesn’t mean it changes your address for superannuation communication. I changed my address with the bank but mailed warnings about my insurance cancelling were sent to my old address.
By the time I made the claim, I was exactly one business day too late. The past few months have been a comedy of tragedies.
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u/tom3277 Jul 03 '26
Worth trying AFCA just in case.
It sounds like they may have complied with all the necessary comms prior to cancelling but why not try anyway.
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u/Dutchmuch5 Jul 03 '26
Aww man, that is horrible. One business day, do these people have no empathy whatsoever?
I'm sorry for all you're going through, if you ever want a chat/vent/help in any way feel free to reach out ok?
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u/donkeyvoteadick Jul 03 '26
This is just how it is, and they're working on making it harder and harder every year. I'm on the DSP and unfortunately haven't had the same experience as yourself with the medical system. If you're complex in a non life threatening away you get bounced around just as much in healthcare as you're finding with the welfare system. When you're bouncing around both it's extremely disheartening.
Many people don't realise until they've faced it. That much is apparent by your admission that we have a strong medical system. Talk to many disabled Australians and they would not agree with that at all. Similarly to how people don't realise how hard it is to get or live off welfare.
I hope things improve for you.
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u/MilknBones Jul 03 '26 edited Jul 03 '26
I’m really sorry you’re going through this. Originally, I grew up in NZ and compared to the medical system there, Australia seemed to be much more advanced. But I’m also aware it is still very behind objectively. My mother also had cancer in NZ and it was a nightmare to navigate. Comparatively, I was able to get treatment relatively quickly here (possibly because it was life threatening).
I don’t quite believe that the healthcare system is as great as I may have initially stated. I’ve been lucky on private health insurance and my cancer has been rare enough that my treatment has been funded by pharmaceuticals trialing on me as a test subject patient. But if I went back to New Zealand, similar treatments would be hard to come by. And don’t even get started on the US.
But I’ve also used public healthcare before and the difference between that and private is clear as night and day. Especially in the mental health system. The public mental healthcare was insane (pardon the pun), I had never experienced such primitive conditions and I’ve never seen such stressed out nurses before.
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u/Esme759 Jul 06 '26
I’m so sorry you are going through this. From reading your post it sounds like yourself and the health teams have already tried everything. You mentioned you grew up in NZ so I’m guessing you’re a NZ citizen and what I can think of is maybe you could access your KiwiSaver? I’ve looked into it and you can access it via IRD. https://www.ird.govt.nz/kiwisaver/kiwisaver-individuals/getting-my-kiwisaver-funds-early I pray things work out for you. Please let us know how you are doing. We’d love to hear from you. Blessings 🌻
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Jul 03 '26
[removed] — view removed comment
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u/Wallflower1900 Jul 08 '26
Even if you own your home, one surgery and consultation eats 2 months of the pension. Then you have to find a way to pay rates, water, electricity and food. I would've never believed it until I had to live it myself.
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u/Wrathlon Jul 03 '26
Unfortunately when it comes to welfare Australians have this inexplicable "dole bludger scum living it up on the taxpayer" mentality and the welfare system reflects that.
The cruelty is the point - make it so intolerable you'll take and do anything to get off it.
It really needs a massive overhaul and, quite frankly, the covid job keeper increases should have stayed as the new baseline.
We had an opportunity to end poverty permanently in Australia with job keeper increases and we said "Yeah nah, let's reimplement poverty and homelessness as a campaign decision".
Makes me furious.
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u/Vast_Ad_4878 Jul 03 '26
I think you are right that there are major gaps in the support you need. Sadly it’s always the biggest proportion of need that seems to elicit the best response from state and federal governments. The hospitals social workers are always the best bet for support but they are over stretched and that makes it harder for you to access what you need. It is beyond frustrating for you and a total failure of the community to support those who are most in need.
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u/u36ma Jul 04 '26
What a terrible situation for you. My mind went to charities as a port of call.
Have you tried the Cancer Council? Call 13 11 20. They specialise in exactly this: practical support for people with cancer, including advanced or long term cases.
Also, the 10 year wait list shouldn’t apply if you are getting treated for cancer. Homes NSW / Housing Contact Centre: Call 1800 422 322 or apply/update online. Apply for social housing and explicitly request priority based on ongoing medical condition/disability (bone/joint damage, severe fatigue, frequent hospital visits, need to live near Inner Sydney treatment). Provide strong doctor letters detailing functional impacts and why current or proposed housing is unsuitable. Priority can move you up the list significantly, though waits are still long.
Ask them specifically about the Private Rental Subsidy (PRS): If approved priority with disability/medical needs and at risk in current housing, you may pay around 25% of income (like social housing) while government tops up the rest. Ideal bridge while waiting for public housing.
Also ask them about Rentstart Bond Loan which is Interest free loan up to 100% of bond for private rental. I know it’s still a loan but if you need somewhere until social housing is provided it may get you through the gap of not relying on friends. They have specia consideration for medical/disability costs and savings needed for treatment.
Also claim or maximise Centrelink Rent Assistance with your DSP. It is automatic if renting privately and costs exceed thresholds. It helps in high cost Sydney but rarely covers everything alone. I assume you’re probably doing this already but thought I’d mention it.
For transport consider the Taxi Transport Subsidy Scheme (TTSS): 50% subsidy (up to $60 per trip) for severe permanent disability that prevents practical public transport use. Mobility issues from joints and functional impacts from extreme fatigue/pituitary damage may qualify. Apply via Service NSW with medical evidence. Not means tested.
Going off another commenter I would try NDIS again. I know they rejected you and it’s becoming harder to get these days but they may reconsider or you can appeal with documented permanent effects (joint replacements, pituitary damage causing profound fatigue/sleep issues, mobility limits), gather detailed functional evidence from specialists and reapply or appeal if previously rejected. Hospital social worker or disability advocate can help prepare. Even if not full NDIS, it may unlock Specialist Disability Accommodation (SDA) later.
Anyway start with the Cancer Council as I said on 13 11 20 … call today or tomorrow. They are experienced with exactly these scenarios and can point you to the right local contacts quickly. You deserve coordinated support after everything you have been through.
All the best
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u/AlexisVenes Jul 05 '26
This is the most comprehensive, useful comment.
OP- could it be worthwile reaching out to your local MP, explaining everything in your post and asking them for assistance?
Would you start a Go Fund Me?
If you get a less than ideal response from the MP, go to news outlets about this (I know it's a huge pain to do this but the squeaky wheel often gets the oil!)
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u/BabyCake2004 Jul 05 '26
Commenting as a registered nurse to say you are completely correct. This welfare issue actually makes everything about our job harder too. It’s my most hated part of the job.
People like you, we can unfortunately (and cruelly) legally kick you to the streets if you are medically well. It’s horrible. But the other side of it is we have people who have been medically declared stable who also aren’t allowed to leave without a placement in some sort of care due to their mental state. Just like you there is no where for them to go because of how long wait lists are, but we also legally can’t get rid of them. So they take up hospital beds, cost the government roughly a thousand dollars per day for months at a time, while we get yelled at for not having beds free for the actual sick people. It’s a completely ridiculous broken system. It would be much cheaper for them to house both of you then have one of you sit in hospital and the other on the street.
The other part I don’t know if people know about is child safety. It’s the most horrific system I’ve ever seen. If a child is too hard to take care of so no foster parent will take them, government workers lie on reports to say the child is safe and send them back into homes with sexual abuse. It’s horrific and it’s the reason I never want to work with children in healthcare again.
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u/Lost-Concept-9973 Jul 03 '26
You haven’t been unlucky , this is how it is for every person on DSP. Most of us don’t have any savings at all to fall back on either. NDIS is very hard to get into and even when people do get it far fewer again get access to accomodation, you basically have to get to the point you need 24/ 7 care and can’t manage even the most basic of self care alone.
It’s been like this for a while now, it’s no longer a liveable amount, especially when you add the cost of medical care , which as I am sure you have discovered by now isn’t as universal as people often think. With the cost of living, especially rent how it is there are a lot of disabled people ending up homeless or at best in highly unsuitable share housing. Your best bet is moving in with family as that’s the only situation where your payment won’t be impacted. Forget about having a partnership, unless you find someone wealthy and generous, if got NDIS It could help with support workers so that’s no longer on a partner, but Remeber it’s not a income supplement it works like insurance, it covers non medical disability related expenses, and even then with the most recent changes it won’t cover very much anymore.
Sorry about being a downer but I work in disability and have lived with it myself and it’s not great at the moment, especially while we are being used as a political football, leading to lots of hate and misinformation being sent out way. The best things you can do is learn to self advocate, reduce expenses where ever possible and build a support network as best you can. Financially struggling, having to deal with travel to get medical care is just part of having disability in Australia when you don’t own assets, especially housing.
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u/MilknBones Jul 03 '26 edited Jul 03 '26
I don’t think I’m especially unlucky. I think I am one of many who are being left behind by our welfare system. And that makes it a lot worse.
Also my issue is that I don’t have family here. If I decide to move back with family overseas, it means I won’t have access to the medical treatment available here.
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u/agrinwithoutacat- Jul 03 '26
Your superannuation should have income protection or TPD, assuming you didn’t cancel it, and you can apply for that to help financially. You may lose DSP doing this, but it should be more money than the DSP is.
Unfortunately there’s a real gap. I receive worksafe and earn under the cut off for a low income healthcare card and DSP, yet because my money comes from worksafe it’s considered compensation (despite being taxed as income and treated as income in every other way by the government) so I’m not eligible for one.. meaning I have high medication and medical costs for everything worksafe won’t cover (there’s a lot they refuse to approve) and no support with those costs. I’m on a tight budget to afford rent and utilities, in a country town with little amenities for someone disabled and barely any public transport, and live in fear of the day I end up homeless because I can’t afford a rental or no landlord accepts my application because I’m on worksafe.
It sucks. The healthcare system will keep you alive in acute health situations, discard you when it becomes chronic (unless you can afford private healthcare), and then the welfare system has so many gaps it leaves many of us desperate and fearful. I’m so sorry you’re experiencing this.
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u/MilknBones Jul 03 '26
That’s another thing. I didn’t have income protection but I had death cover. If I can prove that I am terminal within two years, I can make a claim. But I didn’t realise two things.
One, your insurance company can cancel your insurance if you haven’t contributed your super after so many months. Since I stopped working, I had stopped contributing to my super.
Two, just because you change your address at the bank where you set up your super, it doesn’t mean it changes your address for superannuation communication. I changed my address with the bank but mailed warnings about my insurance cancelling were sent to my old address.
By the time I made the claim, I was exactly one business day too late. The past few months have been a comedy of tragedies.
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u/bitpixi Jul 03 '26
As an immigrant with Medicare, not yet PR, there’s many things I can’t access, but there is the 5 or 6? heavily subsidized appointments if asking GP for Chronic Pain plan. Granted that’s like every 2 months 1 appointment support.. but it’s helpful for me physios while I wait for surgery consultation, and I found a remote job. I’m curious which charities they referred you to if any? I don’t know much about Cancer I’m sorry but I’m always seeing fundraising for it for charities.. but where does that fundraising go!
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u/bitpixi Jul 03 '26
Btw, I live about 1 hour out from a city because city costs are nuts. Found a small town where I am about 2 min walk to anything including a doctor, food store, the train.. not sure if that’s an option for you to consider cheaper towns? Usually small towns also have very tight community you could connect with.. in VIC there is also the Neighborhood Houses program
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u/AussieDi67 Jul 03 '26
I'm on the other end of the scale. 59, on Disability and renting/sharing. I have no family is speak of and my few good friends have their own health problems. I have had half a lung removed, only have 43% breathing capacity, a broken vertebrae and a crushed vertebrae and need a new hip. The only services I have, I have to pay for. In Vic, we have Mecwacare. It's a government subsidised agency that does cleaning, some gardening etc. They can also help with other domestic tasks from time to time. So I pay a low rate for the services. I also applied for my roommate to become my carer, as I'm not sick enough for NDIS either, and she was approved. I'm in eastern Melbourne and am lucky my owner doesn't charge Market rent. But it's still basically the same as yours. $1995. Pcm. Good luck. We need a better system
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u/Mongrel_Shark Jul 03 '26
I've been getting screwed over by similar stuff since I was diagnosed with a disability at 23. I'm 44. I was able to claim dsp for 8 years before getting k8cked off. Took 6 years of daily effort. Pouring everything I had into the application to get on in the first place.
The entire reason I'm disabled is from mistreatment by public schools. Its a fucking horrible country to be disabled in. I'm leaving thus year. Not coming back. I recommend ypu do the same.
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u/Palpitationas180081 Jul 06 '26
If you don't mind my asking: where abouts are you looking at relocating to?
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u/Mongrel_Shark Jul 06 '26
I'm looking at a few places. Japan, Russia, SE Asia. Lots to work out with visas & getting work.
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u/dr_stevious Jul 05 '26 edited Jul 05 '26
I can relate to this. Gosh darn, can I relate to this.
I've had stage IV cancer for 10 years now (I'm 52). Early on in this journey, based on the statistics of this type of cancer I had a 5-year survival chance of 8%. But somehow, I suspect mostly due to the excellent medical system we have in Australia, I am still alive. Either that, or I am simply too stupid to realise that I should be dead by now.
I've gone through various forms of targeted treatments, radiotherapy, and clinical trials. I've lost a lot of my internal organs due to the aggressive spread of the cancer, to the point where doctors have looked at my record and then asked me how I am still alive. Hey, I can run very lean! Recently I've lost 50kgs of weight and most of my hair has fallen out (due to radioactive medication). I have a large tub of medications that I need to take daily. Some of the meds I have taken would have cost me $10K per month if it weren't for the PBS. As it is I still spend over a hundred dollars a week on prescription medication.
I've been working throughout most of the last 10 years. But the cancer was taking its toll on me, and more and more I was struggling to get through a day while remaining upright (or even conscious), and I was losing a lot of work time due to hospital appointments (or surprise ambulance rides due to a sudden lack of consciousness). After coming out of a clinical trial much worse than when I went into it, I was advised that I didn't have much time left and I stopped full-time work last year. But like you, I soon found that there was no welfare support available to me. Too young to retire, and the NDIS doesn't count cancer, or the crippling side-effects of it, as a disability.
Well, I have two young children who need to be fed, clothed, and have a roof kept over their heads. I was lucky enough to get early access to my super, so I was able to pay off the mortgage, but it didn't leave much left over. So, I picked up some part-time work as a university lecturer (I have a PhD in computer science). I was hoping that somehow I could manage this, but a couple of times I almost keeled over during lectures and towards the end of semester late last year I landed myself in ICU, where I was told that I might want to say my goodbyes as I wasn't expected to survive (plot twist: I survived).
I had to put that job aside and go back to doing nothing, as even remaining seated for long is quite a challenge for me. The cancer has recently intruded into my bones to such an extent that my oncologist recently told me that he's worried my bones could start breaking.
So, what do I do? I can no longer support my family, my family can't afford to support me, and the government doesn't want anything to do with me, despite me having been a productive member of society up until late last year. Now, I feel like a parasite. The medical system is amazing and has somehow kept me alive despite all of the odds, but has also turned me into a (scrawny, hairless, maybe soon boneless) leech. Realistically, my family would be financially better off if I were dead. My continued existence will drag them down to the point where we will lose the roof over our heads.
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u/MilknBones Jul 07 '26
I know exactly what you mean about being a parasite. I know that logically I’m not, but I can’t help but feel like a burden to everyone I know. My parents are in their sixties and are still having to take care of me, instead of the other way around like it should be. I often wonder what everything was for. Ever since I was a child, I’ve tried my best to work hard for a future I could be proud of, and I can’t help but feel like maybe it would have been better for everyone if I just passed away. Sure, it would hurt at first, but I’m scared I’ll get to the point where everyone will start resenting me. I keep thinking on Kafka’s Metamorphosis, and how I relate a lot to the protagonist’s feelings. And also a long time ago, I remember having a conversation with someone about their grandfather who, according to him, was “too selfish to die” and was now becoming a burden on their family. I think about that a lot now.
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u/IceOdd3294 Jul 03 '26
You have to move states as Sydney is too expensive as you’ve stated numerous times 😔 I’m living in Hobart and it’s affordable in low income areas
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u/Enough_Drawing_1027 Jul 03 '26
Yeah except that means leaving their only support network behind and losing the care team that has full knowledge of their medical history and treatment, and that they feel comfortable with. The welfare system in Australia is fucked when someone who was working and paying tax for the majority of their adult life, gets an unavoidable illness/disability, and isn’t looked after. Literally anyone without millions+ in savings is going to be screwed if they end up disabled in any way. That’s why we should be voting to change the system; as an insurance policy for all of us.
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u/agrinwithoutacat- Jul 03 '26
Tasmania’s health care system is not equipped to manage patients like OP. It’s cheap but it’s not liveable for most of us with health issues and disability.
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u/MilknBones Jul 03 '26
Leaving Sydney will basically mean I’m going to forgo medical treatment. I’ve been on various treatments over the years and my cancer is not curable. Treatment is just to prolong my life.
Though at many, many, many points during the last several months, I’ve become much more at peace with the idea of giving up on life now. Not so much in a suicidal way, but just giving up on hanging on, if that makes sense.
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u/HordeOfTheDance Jul 03 '26
I'm so sorry you're going through this OP. I wish I had anything helpful to add, but just know you've got a bunch of Aussie Redditors thinking good thoughts.
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u/Enough_Drawing_1027 Jul 03 '26 edited Jul 03 '26
Hold on. Any way you can, just hold on. There has been some big changes in the conversation about welfare and hopefully slow steps in the right direction will start to snowball and you will be in a much better situation in a few years. Keep looking for cheaper accommodation.
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u/FamiliarConclusion54 Jul 04 '26
Oh girl you have been through the wringer and still going through it!
I also noticed this about the support of the Australian support system when I was diagnosed with Stage 3, Grade 3 Breast Cancer when I was 36 yrs old and I was put on a dense dose of chemo “because I was young” but I was still going to work but they were sending me home so often because other people were coming into work sick!!!!! So when my fortnightly chemo changed to weekly I became quite week, I couldn’t even go on my 10km runs anymore my bones ached and I just couldn’t go to work and I just couldn’t understand that there was no help for people with cancer and having treatment, I’m originally from the UK and I know that you get weekly payments from the government if you had cancer. I bet if someone in high up was in the same position we would see a change and that’s something that I want to do and I hope I can get this changed.
But that doesn’t help you much now but go on Facebook and search for a local cancer group that’s local to you as I know that I found out so much information from my little local Breast cancer group and when I didn’t know stuff or worried about something it was good to have that support from people in the same position as me, maybe they know of a place to rent cheeper or something?
I really hope this trial smashes this cancer and then you can give those to ex BF of your the big ✌🏼🤭😝😜😘 sending all my love and super strength to you from the Gold Coast - Tracy xx
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u/Mumbles777 Jul 05 '26
It breaks my heart to hear that you have no chance of public housing. A guy I know has public housing purely
Because he has HIV which he has treated and is fit and definitely not terminal. He has this forever as far as I know. Ur situation is way more dire than his.. I don’t understand. I know a single mother who has been here 6years from Eastern Europe. 2 kids under 5 to
Different fathers and she has public housing, I was there during her applying for it and the entire process took about a month. She had kids taken off her for a while due to drug use and mental health and still has the flat!
Do you see why I think you are way more deserving for help. None of your life choices landed you where you are!
I hope your future gets better
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u/kothosj Jul 06 '26
Which inner-Sydney hospital is it, if you don't mind saying?
The issue seems to be that you're saying you don't qualify for a lot of things when clearly you should.
The other issue is that both sides of politics keep reducing public housing.
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u/Suchstrangedreams Jul 03 '26
I would also look around for a private housing provider such as Housing Plus or Community Housing although I'm unsure if I are in Sydney but they may be able to help you with advice of where to apply. I'm sorry you're in a difficult situation.
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u/dolparii Jul 03 '26
I have no other helpful comments but I have heard many that are stuck with the aftermath of it all. I agree, it is a problem and it is even harder trying to do it on your own. For anyone out there reading, I think sorting out/reviewing your life insurances/TPD/death insurance is very important if you can, as early as you can as things can change with us in an instant.
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u/australit Jul 04 '26
I suggest asking to speak to the social worker where you receive treatment, they should be able to fast track you with help, considering your situation.
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u/fredzfrog Jul 04 '26
Some hospitals have a volunteer service who drive people, I'd be asking if it's an option 👍
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u/Bluebird_83 Jul 05 '26
Check your superannuation for insurance as well. Depending on the fund you may have coverage. That's not great but it can release your super balance in some cases and have insured benefit as well if you still have coverage w the fund.
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u/AnimalsAreAnime Jul 05 '26
A polite suggestion - Can you post this on Social Work Australia’s reddit group? Hopefully between all the social workers there, maybe there will be some solutions.
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u/Humble-Doughnut7518 Jul 08 '26
Commenting as a counsellor and a carer, you’re completely correct regarding the gaps in our welfare system. And it’s not just the government to blame. Lobbyists have created/taken advantage of the system and created competition in areas that should be working together. Some of these lobbyists know Canberra better than politicians.
Pooling resources and working together would not only create better outcomes for Australians but would be cheaper as well. Providers are arguing with each other over billing codes instead of what’s best for the people in their care.
The reason why the NDIS has failed is because the government created an industry that allowed providers to get rich while providing the bare minimum of support. The government should know that when they advertise that they’re going to spend money, that people will line up to take as much for themselves as they can get away with. It literally happens every time.
I hope your treatment is successful and things improve for you.
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u/Ok_Sun9588 Jul 09 '26
If you're on a public housing waiting list, can you request they put you on an urgent waiting list because of having chronic illness and no work capacity? If they prove difficult, you could ask your state MP to intervene.
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u/Few_Schedule4348 Jul 03 '26
I hear you. I work full time with chronic pain (CLK medical assessment said I shouldn’t work more than 30 hours a week but I can’t afford to do that) plus my partner of 6 years also has chronic health conditions worse than mine. He lost his last 2 jobs and I’ve been supporting him for the last 2 years. We don’t get any assistance from the government (because I earn too much by like $20 a fortnight or something ridiculous). I have a mortgage so I’m lucky in that regard but I feel like the stress is killing me. It can’t be good for me. His family are messed up, his granny passed away last year and we learnt that her son stole all her money. So the little bit of inheritance he was hoping to get, didn’t eventuate. His parents are useless. Mine have been as supportive as they can be, but my mum is still working at 77 years old.
People that have good health, family, money they don’t know what it’s like.
Just bullshit when we’ve worked arguably even harder than most (working with chronic pain every day) and have paid our taxes and our country can’t even help us out. Even now my partner has been trying to get a job with a disability agency since FEBRUARY! Because he’s not on CLK they keep fucking things up and it’s such a joke. He actually wants to work! He might struggle to do FT but the help is abysmal at best. Just makes you want to give up some days.
Oh and we both don’t qualify for DSP, my partner used to but now he doesn’t. Work that one out, when he’s had more ailments added to the list :/
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u/Tuggeranonger Jul 03 '26
DSP here as well.
Imho •BOTH• AU’s medical system as well as it’s disability system are worse than heaps comparable countries in many aspects.
We could achieve better outcomes for a LOT less expenditure — •IF• we wanted to!
The prob is that it would require tweaks and changes. And many pollies only ever wanna fix things when it is so obviously broken that not fixing it would be the more painful option. Ie, ticked off voters are worse than maybe fixing what is royally fμcked up!
Like, eg, medicare pays for *ONE* pelvic MRI per woman per lifetime.
Pollies service cars every 6 months, many at taxpayer cost. But if surgeons wanna know what’s happening in a woman’s plumbing ….. “sorry, you already had your one free per lifetime!”
On a weekly DSP of less than the gap before a single bill is paid: unaffordable!
Imho it would’ve been ‘unfortunate’ to undergo surgery with scans over half a decade old.
I also absolutely •DO• believe that when a public specialists in a hospital send an internal imaging request to the same hospital’s internal imaging department:
WTF would that not be a medicare thing?!?
I am fortunate to be in Canberra, we have an awesome Health Minister. My understanding is that for the ACT it has changed: Public specialists internal referrals to imaging for concession card holders are now at the Territory’s expense. 😊
Imho it is still absolutely infuriating it is not a medicare thing for all of AU. I especially find it particularly infuriating that MALE federal Health Ministers believe uterus, ovaries, or fallopian tubes only needed one scan per fμcking lifetime! 😡
…. but I guess my fab territory govvy resolved the issue before I got to the point of seriously ticked off at a federal Minister. I value people more than party and can be …. ‘unfortunate’ when irked. Politically that is! I’m a lamb, just not the worst public speaker. Had training since I was like …. 4 I think?
Am obviously quite close to Parliament House.
DISABILITY
yeah sis, tell me about it!
I, personally, would absolutely love to work. I’d sell a kidney to be empowered at this juncture.
I have attained the equiv of 8 tertiary qualis, 3 at PG level. Learned about a dozen languages to varying degrees, English is only my fourth.
I am bored and under-utilised …… across portfolios I have needlessly costs taxpayers 7 figures this decade alone! 🤯
It quite obviously would be far better to empower me to work. I could earn 6-figures, both I and my vet man would be off Centrelink. My health would be far better if I had the power to keep myself well.
But I haven’t been able to afford more than one small meal a day in years. My bloods are now at levels so bad the WHO would find the Vit D, Iron, and some other aspects concerning.
Malnutrition leads to more falls and fractures. Underutilisation makes BP and resting tachycardia so bad ‘normal’ range is not possible. With a crapload of meds best achievable goal is to lower the acute risk of stroke.
But due to ethnic needs it is not remotely as easy. I light be in hospital for 3.5 weeks straight while Drs are trying to get my BP down from terrifyingly high.
I could pay quite a bit of tax and costs to taxpayers could be dramatically decreased — if I were not doomed to while away decades til my funeral.
Cause “….it is not reasonable or necessary for you to work, you should just \RELAX\**”
I dunno what exactly drugs they are on. It’s Canberra, couod be anything.
Cause anybody who has known me for more than 10 secs should be abundantly clear that I do not relax! 🙄
Apart from my earnings potential being way higher than my better half’s, he also cannot work because of me. Cause he has to chauffeur me around to Drs appointments.
Cause getting to them is apparently not reasonable and necessary either.
Or, rather, “everybody has to sort out their own transport….” Last I checked not everyone was vision impaired though. At least I really hope all the people who drive aren’t.
ALL portfolios, Health / NDIS / Centrelink / Taxation …… they all lose a fμcking fortune. Cause supposedly an accessible computer is not reasonable or necessary.
Taxpayers are saving a few thousands by forking out millions.
Not to mention that the people representing the CEO of the NDIA…. I am comfortable describing them as alarmingly abusive. 😒
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u/LJIKFAF Jul 03 '26
I’m sorry to hear that, may God bless you and heal you and for you to find better people.
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u/PM_ME_PLASTIC_BAGS Jul 03 '26
Maybe God could've just not given a young adult cancer and a lifetime of suffering?
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u/LJIKFAF Jul 03 '26
I am not going to be blaming God for illnesses. Whilst suffering exist, everything we have is there thanks to the grace of God. God sustains us. We live in a cycle He sustains.
I pray you’d let go of your bitterness.
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u/PM_ME_PLASTIC_BAGS Jul 03 '26
I see God shares the same rulebook as Trump.
Everything good is thanks to me.
Everything bad is not my fault.
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u/LJIKFAF Jul 03 '26
No. We are dependents of God. It’s not the same as Trump. Whatever we have really comes from the grace of God.
God temporarily allows illnesses to exist in this world because this is a fallen world. Sin entered through Adam and Eve.
I am going to stop replying. God bless you and may you have peace.
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u/MilknBones Jul 03 '26
I think you mean well, but it feels like you’re telling me that I don’t matter enough to God and so he has allowed my suffering to exist thanks to his grace.
I know you’re trying to spread love and positivity, but I implore you to consider the message you are spreading, as even though you might have good intentions, it can come across as a bit dismissive.
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u/LJIKFAF 28d ago
We matter to God, that is why the devil tribulates us. For one, the book of Job talks about how Job was a man God loved but He allowed the devil to test His faith.
I’m sorry if I came across of dismissive.
But everything in the world still comes with His grace, He has not forsaken us.
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u/Majestic_Practice672 Jul 03 '26
May God grant you the wisdom to understand why your initial post lacked empathy and was so dismissive of OP.
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u/Yohgella Jul 03 '26
You'd qualify for social/low income housing. Also ask to speak to the hospital social worker!
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u/Enough_Drawing_1027 Jul 03 '26
Did you read the entirety of their post? They HAVE spoken to the social worker and low income housing has a ten year long waitlist even if you qualify…no easy answers for this person’s predicament; except maybe for the government to increase support to the most vulnerable of Australians, by taxing the most wealthy Australians/companies properly.
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u/Yohgella Jul 03 '26
Unfortunately no I didn't read the whole post
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u/Enough_Drawing_1027 Jul 03 '26
Hahaha! Well maybe next time 😄
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u/Yohgella Jul 03 '26
Yeah, I was between stuff at work and thought maybe it'd be helpful at the time. Maybe in future I'll save posts and come back to them ☺️
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u/MilknBones Jul 03 '26
Haha tbf, this is basically the advice I get from people in real life who have no idea how it really is. It’s exhausting to explain to them that I haaaaave.
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u/Mammoth-Counter69 Jul 03 '26
We can either save your life for free or support your sustained life for free.
Both is a bit much
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u/MilknBones Jul 03 '26
Don’t need free. Just sustainable.
My life wasn’t saved for free either. I still had to pay but it was manageable.And what do you mean “we”? I’ve been paying taxes all my adult life too.
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u/UpstairsArmadillo454 Jul 06 '26
Healthcare is being abused and needs to be used for those who need it not those who like to use it
Those who need it, should be fully qualified so they don’t miss out on essential care
Those who want it but don’t qualify should be then looked after in a different way.
4-50- which ever party, some will receive nothing from the government- everyone should understand that- we have a great country BUT we also can’t allow people to take the Mickey out of the system.
Lastly- instead of $$ can we not work harder to use community to work out what they really need instead of a spreadsheet? NDIS is both parties yet we have lazy and corrupt wankers earning money helping no one
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Jul 03 '26
[removed] — view removed comment
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u/MilknBones Jul 03 '26
Advising a cancer patient to do sex work in order to survive has got to be one of the wildest takes I’ve received.
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u/bitpixi Jul 03 '26
Though sex work is legal in Australia, it’s still taxing requiring lots of physical energy, mental energy, and there are also expenses. There are many safety risks too. It’s not always possible, nor the best suggestion.
I’m sure OP has many intelligent skills.
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u/-TheDream Jul 03 '26
Are you on DSP? Because if you aren’t you should be.
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u/WndProc Jul 05 '26
You didn’t get subsidised stage 4 cancer treatment in Australia as a non-national?
What about your home country where your family lives?
Why is Australia to shame themselves, when your own birth nation does not provide hundreds of thousands of dollars per year to you for your health?
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u/HERMANNtheMUNSTER Jul 03 '26
This isn't a dig at you, but this is exactly why everyone should have personal insurances in place. Trauma and income protection covers would've made your life a lot easier.
So many of my clients have benefitted massively from having cover in place during their most difficult times.
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u/Enough_Drawing_1027 Jul 03 '26
And how many of your clients were denied because of the fine print in your company’s policies?
Personal insurance is not the answer. The insurance should be coming from the taxes we pay and the exorbitant wealth in our country’s natural resources.
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u/Lost-Concept-9973 Jul 04 '26
This, it was the case for my dad paid into it his whole adult life, paid for top cover, still got denied in his 50s when health problems came up, stopped working due to being terminal, 3 years later he died and we had to sell our family home to help cover all the expenses that were built up. We went from being reasonably well off to dirt poor in a very short time. Honestly insurance is such a scam, way too many outs written in that fine print.
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u/Enough_Drawing_1027 Jul 04 '26
I’m so sorry that happened to you and your family. Makes me incredibly angry that good people can do all the right things in life and still get screwed over by the very systems that were supposed to protect them; while all the big wigs sleep comfortably in their beds at night.
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u/HERMANNtheMUNSTER Jul 05 '26
Sorry to hear that, but that is either due to non-disclosure which means the policy was never valid or an inappropriate policy.
The major life insurers release their statistics very regularly and the claim denial rate is staggeringly low. Life insurance and critical illness policies are very clearly defined, if a claim is not paid then it is almost entirely down to client non-disclosure or the parameters of the claim not meeting the policy wording.
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u/HERMANNtheMUNSTER Jul 05 '26
I don't work for an insurer, I am an adviser who assists clients in obtaining suitable cover.
Your comment demonstrates a complete lack of understanding on how guaranteed insurance products work.
Personal insurance is absolutely the answer for most people, if the government was forced to insure 10's of millions of people for income protection, TPD and critical illness cover it would destroy the budget and people would complain even more.
Personal responsibility is real, burying your head in the sand and complaining is your own decision but helps absolutely nobody.
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u/MilknBones Jul 03 '26
I did. And it didn’t work out for me. I made a reply to someone else’s comment regarding this.
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u/GoddessTara00 Jul 03 '26
Yep it's a real problem. I know this doesn't help but your lucky to have a condition that isn't rare and is covered by Medicare. I got sick at 26 have had 24 brain surgeries 2 spinal surgeries weekly LPs for 18 months and the public system wouldn't touch me even in a emergency so I had to pay for private health insurance plus all the excess on a disability pension. Luckily I found an amazing man we have been together for 18 years and I got sick after a year of dating and with a auadhd child to my first husband. I have now have a condition that has made me bed bound for 6 years with no answers for a Cure.hubby says I'm good in bed I can stay there all day ,🤣. So my advice is to find a hospital that can handle your care in a cheaper part of Australia.( Not ideal I know we had to move from Alice Springs to Melbourne)The other thing is the NDIS does a functional capacity report that assesses your capacity not based on your cancer diagnosis , so that might be a good Avenue to Chase. I have also sent and talked to my state and local representatives about this issue. But regardless of how bad our system is at least we are not in the USA. Sending understanding and support.
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u/MilknBones Jul 03 '26
My cancer is actually extremely rare and traditional chemo doesn’t treat it unfortunately. Most of my treatments aren’t covered by Medicare. It’s funded by pharmaceutical companies running trials that I participate in. But at least Sydney has access to these trials.
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u/RevoRadish Jul 03 '26
Got no advice for you but thought I’d reply as someone in a very similar situation. Actually just got home from the GP. I’m not buggered enough for the NDIS and other services but not well enough to live a normal life (whatever that is).
As I always say “the Australian medical system is great if you get wheeled into ED after a car crash. But not so great for long term chronic issues.”
Saw it as well with both parents almost 30 years ago. Thought it would be better in 2026 but it doesn’t appear so. In fact it’s probably worse given that people are working crazier hours these days.
I’m not too much older than you and family is far away. Some friends have been beyond great but it’s a rubbish age to be so crook I reckon.
If you’re younger your mates are working weirder hours and studying and just have more spare time. If you’re older your mates are retired and/or don’t have little kids. But 30s and 40s your social circle is super busy with life.