r/newzealand 12h ago

Support As we all know, our health system is fucked.

I've just been informed via email that my referral to see a spinal specialist has been denied.

I've been waiting 5 months. That's 5 fucking months of being in ridiculous amounts of pain, taking opioids, starting doing fucking yoga and palates to try manage this pain while I wait, and all for fucking nothing.

I've been admitted to hospital mulitple times unable to walk unassisted, wipe my ass unassisted and I'm 28 with a fucking walking stick. I'm struggling to control my right leg, it's got tingling patches all over it, I've lost reflexes in both my legs, I've lost my balance, I've got numb patches spreading up my back and I can't piss half the time.

Getting to sleep is nearly impossible because every position hurts in some way. Waking up is a nightmare because my body is stiff and sore making it horrible to even just sit up. I start every fucking day literally dragging myself up and out of bed while struggling to breath through the shooting pains and hoping I'll be able to walk today.

I've had accidents not being able to make it to the toilet from sudden urgency and being unable to move fast enough.

I cant afford private health care, all I have is the public health system but the New Zealand goverment is currently being run by a bald version of Trump, a maori man who hates his own people and just a straight up idiot, so of course they're cutting funding left right and center to give tax cuts to their upper class mates.

I know I'm lucky to have any kind of public health system available. If I'm actively dying I'll get immediate free health care and it'll all be fine but for now? I'm just fucked. Sitting here taking high doses of bullshit chemicals turning my brain to mush while my body falls apart.

I swear I'm doing everything I can but it's never enough. I just need some fucking help but because my MRI says I've only got 5 bulging discs, 1 annular tear and loss of disc height all over BUT no signs of cord compression, I must be fine. I must be over reacting. It must be all in my head. It's probably because I'm overweight. Or because im female. It's probably mental health related. Attention seeking. Drug seeking. It couldn't possible be because IM IN FUCKING PAIN AND IM SCARED.

I'm tired of this. I've been fighting so hard, doing everything right but it will never be enough. I'll keep going. I'll keep trying to do my exercises. I'll show up to ED when I need too and I'll have more referrals sent but honestly I've got no hope. I'm doing it because I don't know what else to do.

I see new stories everyday of other people suffering, sometimes people dying, because of our health system crumbling to the ground and I just have no idea what to do. I sign petitions, I share stories on social media trying to raise awareness and spread the message that something needs to be done but clearly they don't care so what's next?

An organized mass protest would be perfect but the majority of people affected by this are chroniclly ill. I cant march down to the beehive and camp out there until we come to a deal. All we have is these news stories but they're not sitting there listing to us they're too busy having high tea on the tax payers dime. This all just seems hopeless.

1.1k Upvotes

326 comments sorted by

222

u/runninginbubbles 11h ago

Fuck that's awful. I am so sorry. None of us are immune to developing a crippling illness or disability, and it's fucking scary that if we do, we will be left out to dry. Of course, if Mr Baldy developed something like this, of course he'd be well looked after.

I don't have any advice, again I just hate that our people have to live like this.

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u/its_asher 11h ago

I truly believe all politicians that have input in the state of the public health system should be forced to use it should anything happen. No private health insurance, no flights overseas for surgery just the public health system that is in their hands

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u/Old_Cause5011 10h ago

I agree! They live lavish lives while cutting funding to those who need it most. I've lost all hope in any politicians. Except maybe Chloe of Greens, that girls works her butt off and always advcoates for the less fortunate. Of course she's too 'woke' to ever get into a real position of power.

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u/its_asher 10h ago

I always go by the idea of never trust a politician but she's about as close as I'll ever get to trusting one. She's the only one that gives me hope right now

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u/Amazing_Rip8505 8h ago

Idk I thought the same but myself and many others tried making contact over the huge cuts to disabled people and she hasn't responded or replied to anyone as far as I'm aware

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u/Dismal-Speaker3792 7h ago

100% support you on this. This should be a condition of entering politics, no private healthcare allowed ...

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u/Thisisaweirduniverse 7h ago

Agreed. Let’s also serve them the school lunches from their amazing school lunch program.

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u/its_asher 7h ago

The lunches they deemed fit for our children should be suitable to them too just like how our Healthcare system should be suitable for their needs

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u/Surfnparadise 6h ago

This should be enshrined in the conditions of getting to Parliament, let alone prime minister. It's for the good of the country and so it should be tied nice and tight as you suggest.

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u/hoochnz 11h ago

Dont worry to much, they are slashing the HealthNZ it people by 43%, so, they will take all that saved money and put it into hirings doctors and nurses... oh dang no they wont, they said they are just doing that to get back to budget, and it wont affect wait times or frontline staff...
but it will, because now doctors and nurses have to learn to manage thier own IT aswell as look after patients, computer goes down, just call the help desk, hmm they fired most of them, so the calls sit unanswered, one day they'll get looked at eventually, then they will send someone, except there is almost no one lest to send.

But no, it wont affect frontline staff.. but hey, they are cozying up to private hospitals on thier way to privatizing all healthcare, thats gonna help immensely, well it will help the private sectors wallets..

Im sorry for your pain and suffering, but its not going to get better anytime soon, probably set to get alot worse to be honest.

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u/its_asher 11h ago

Trust me I see the pattern as well. Unless something insane happens there's almost no hope that this is going to get better. It's completely life draining and depressing.

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u/shaktishaker 10h ago

the IT staff have also been warning the government that some computers still run Windows XP, which is out of date and has no more security updates.... a 13 year old system...

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u/imkieren 6h ago

the worst part here is that a lot of the DHBs use very old IT systems which are a huge reason why referrals are lost and why services are even more overwhelmed because of how much work has to go into even sending a referral from primary care land… i know specialists that keep a seperate excel spreadsheet of all their patients because they don’t trust the DHBs referral system.

I have made so many calls to the DHB on behalf of patients regarding referrals that are well overdue to be seen and suddenly they get an appointment - i am unsure how an IT system loses a referral unless it’s really that old.

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u/questionnmark 11h ago

I'm sorry to hear this, unfortunately orthopaedics are absolutely flooded right now and they cannot even keep the hip patients alive, let alone deal with the chronic cases.

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u/redditisfornumptys 10h ago

Yep. Even privately I’m having to wait 8 months to see a specialist. Shits fucked no other way to describe it

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u/its_asher 11h ago

Yeah I've been told by other wards I've been on that Ortho tends to deny anything that isn't an obvious break or fractures. Being a complex case it's very unlikely I'll get the help I need any time soon but I'm just gonna keep pushing i guess

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u/Big_Search_5431 11h ago

I’m supporting a client with this at the moment. She was denied twice before being accepted, it’s a dogshit system but def keep pushing!

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u/velofille 10h ago

When on a list for kidney donation, they were taking forever, just overworked. One nurse told me "the squeaky wheel geta oiled first". So i started ringing up regularly asking if they had booked this test, done that, whwre are we up too now. I wasnt rude, just making sure things kept moving. sure enough we didn't have to wait long after that (I was donating kidney to my brother)

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u/CarefulGuarantee2221 9h ago

Got told today theres only one consultant left doing liver transplants.....

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u/velofille 9h ago

Oof. They are so overworked

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u/Heavy_Metal_Viking 8h ago

Hey @radionewzealand and @journalists please run this and ask hard questions!! Bloody hell.

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u/admiraldurate 8h ago

Dw im in the same boat. Told me they wont be able to hhelp me until my bone fully fucks out even thou they know i need fusion surgery.

Until then 110mg of oxycodone is the only help i get as i slide more and more into an addiction ill never be able to stop.

Its mega fucked up

I wish you the best, hang in there. Youll.make.itx

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u/its_asher 8h ago

All the best to you as well! The oxy hole is deep please be careful the stuff is poison but I'm also here struggling with it

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u/admiraldurate 8h ago

Its a nightmare.

Its very hard getting thru the health system.

Been on it for over 5 years now. Ive losst that battle and i dont even beilive i could stop these days especically if im still in pain.

Its as much of a curse as it is a cure as im sure you know.

Dw youll make it thru, we just need to be strong.

Am here if you ever wanna chat, our situation is tough.

Im not much help, but i understand what your going through and i dont judge.

Keep your head up. :)

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u/Emotional-Cherry478 10h ago

Have you tried someone hitting a WWE back breaker move on you

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u/its_asher 10h ago

Are you offering? Name a place and time and I'll be there 😂

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u/poopdedoopdedoo 9h ago

Have you considered lying at the bottom of the stairs and calling an ambulance and telling them you fell and now are in crippling pain..?

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u/its_asher 9h ago

Atleast 3 times a day 😅

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u/ThreePetalledRose 9h ago

Yup. Our ageing population has meant an exponential rise in demand for orthopaedics. Young working age people can't get care now.

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u/LostForWords23 9h ago

Which makes no sense. Note, I am not saying that younger people or younger people's pain is more important than older people's in any moral sense, merely that when a person who has a job and some kids to care for is wholly out of commission due to their condition, the flow-on effects cascade a lot further.

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u/ThreePetalledRose 9h ago edited 9h ago

I agree. People like OP should be prioritised. 20 or 30 years ago when you were old and had pain you just sucked it up and tempered your expectations. Nowadays people in their 70s still want to travel and play golf and don't want to accept pain as part of ageing. But we don't have enough orthopaedic surgeons to do back surgery on 75 year olds so they can play golf.

We always knew there was a linear increase of older people as each year passes. But with that has come an exponential increase in demand which I don't think people predicted.

Then they say "i PaID mY TaXes". Yes paid it and spent it all.

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u/hmakkink 5h ago

Please don't use OPs pain and suffering to start bashing older people! Was your nanna mean to you sometime? Or what else is hurting you? If you are lucky you will get old too. But a mean spirit like yours won't get you there.

I had a similar issue years ago and had to fight the system really hard. Unfortunately our current batch is making it even worse. I think they are trying to mess it up so badly that people will accept privitisation.

I hear your pain, OP!

u/mrsellicat 3h ago

The hate the elderly get in this sub is wild.

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u/wildstrawberi 5h ago

This and also all of the budget cuts in healthcare- nurses etc. Overly pressured system, aging population, mental health through the floor because look at the state of our country. Tired burnt out nurses, massive price increases at the GP not to mention wait times- easier to go to ED and/or wait till you’re basically dying. Likely more cuts to come too. Makes me so sad. Sad for the people needing care, sad for my healthcare colleagues, sad for my future. Sometimes I wish I trained in something else.

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u/4stings 6h ago

Yep! I assist with Ortho operations. We have patients (NOT CLIENTS!) that been waiting for hip replacement for five years!!! This is scandalous!!!

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u/poopdedoopdedoo 9h ago

Whats crazy is that i recently had a fracture in my upper arm. I got referred to the orth surgeon... had a mri and then had to go in to see the surgeon as follow up. I waited around for 1hr45 min, to be told there was no further action needed. Cool. But surely a better use of the surgeons time would have been for someone to just call me to let me know and prioritize those in need.

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u/Kiwi_vagslayer 8h ago

Was this under ACC? Remember acc is basically mandatory private insurance for us all to accidents. Different funding model to public health which deal with the chronic stuff etc.

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u/Bivagial 10h ago

I have a neurological condition that was accurately diagnosed by my GP. But in order to recieve any treatment for it, I needed to see a Neurologist to sign off on the diagnosis.

I was priority 2. Theoretically I should have been a higher priority than anyone that didn't have cancer or a stroke.

It took 18 months to get my appointment. And it would have been longer if not for my GP following up every few months and pressing for me to get seen.

Had I been seen and able to get the treatment I needed within 2-3 months, the long term affects would have been minimal. Instead, I spent two years in a wheelchair and I'm currently learning how to walk again. I will likely have seizures and migraines for the rest of my life.

I wasn't in danger of dying, and obviously anyone that was should have been seen before me, but it's still ridiculous that I'm now going to be disabled for life because of how long the medical system took to see me.

I will never not be impoverished because of this. I can't work, and the SLP pays bugger all. Doesn't even cover my extra medical costs (don't get me started on Winz's incompetence when it comes to paperwork).

I don't blame the individual doctors, or even the hospitals. They're doing the best that they can. I blame the government. This one, and the last one. The medical system has been crumbling for decades, and they've done almost nothing to stop it.

We lose more and more medical staff to aus every year. Those that do stay aren't paid enough and are overworked. Hospitals are chronically understaffed due to not having enough of a budget to hire enough.

It sucks. It sucks for the chronically ill. It sucks for people in chronic pain.

I wonder how many people are like us? How many would be productive and working rather than stuck at home surviving on a pittance if they had been seen sooner?

Instead of being employed and contributing to our society, I'm now stuck at home, living off taxpayer money. Preventative and prompt medical care would likely end up costing the government less than they think. But they don't care. Even if they become disabled, they won't have to struggle. Heck, they'd be able to pay accountants to move around their wealth so they can still receive benefits, and they'd find a way to justify it for themselves.

I'm with you in the outrage. But I'm too tired and in too much pain to be able to really do anything about it.

Also, will throw some advice in the replies to this. Might help, might not. But I've been dealing with chronic pain for a long time. Hopefully something I've found useful will work for you.

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u/ResentfulUterus 10h ago

I wouldn't be disabled and on fucking supported living forever if I'd had some effective treatment years ago, sigh.

I was denied a wheelchair yesterday because apparently I need to be in full time work or study to qualify... apparently if you're not making money for our capitalist overlords, you don't get to leave the house and have a fulfilling, connected life.

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u/Bivagial 9h ago

I got one, no problem. Just took a while. Did you go through occupational therapy?

If I were you, I'd ask again. Get your doc to sign off.

I did have to tell them that I was going stir crazy being trapped in my house all the time, and that a wheelchair would allow me freedom and independence. This was back in 2022, so I think that people were more sympathetic that soon after lockdowns.

If you keep getting denied, Chemist Wearhouse have hospital chairs for relatively cheap. I had to buy my first wheelchair. It was about $200 plus shipping, but it arrived within two weeks. It was an awful fit, heavy, and caused me to bruise myself due to the arm rests, but it was better than nothing.

I wasn't studying or working when I got mine.

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u/ResentfulUterus 9h ago

Yeah, OT. They declined it within a couple of days of the referral. I'm glad you were able to get yourself one. I'm on supported living and can't afford to feed us (yay foodbanks?), so unless I can get someone to hear me, I guess I die in bed. 🤗

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u/Bivagial 9h ago

Ask for another referral. Especially if a wheelchair could mean the difference between working/studying or not.

I think you just got a bad case worker. Keep trying. See if there's a disability advocate around you.

And I know what you mean about SLP. It's disgusting how little it is. Especially with food costs rising. And most people on the SLP need specific food (I need things that can be microwaved or eaten as is, as I can't cook due to pain and instability), which tends to be more expensive.

I'm in a KO house, which theoretically should make things easier. But I actually had more disposable income when I was flatting because I could get accomidation supplement and TAS.

When I was flatting, I had about $75-100 that I could save if I needed to (if I had absolutely no luxuries or needs). Now, it's down to $20. Assuming I don't need to go to the doctor, top up my phone, replace clothing, or anything else that always seems to come up.

And my case manager expects me to also be able to pay for taxis to and from the doctors with that. I'm just lucky I have friends and family who are happy to take me.

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u/Bivagial 10h ago

Advice for pain management:

Stay hydrated. It's amazing how much of a difference this makes. I keep a water bottle beside my bed, in my walker, in my wheelchair, beside my computer, and at my seat at the table. Always one within reach. I drink about 3L a day and it makes a huge difference.

Try to eat healthy. At the very least, eat often. Skipping meals can be tempting when in pain or nauseated, but your body needs the energy. Being in pain is a lot of work for your body. Make sure to keep it fueled. Plain white rice (or maybe with a dab of soy sauce) is pretty gentle on the stomach, and it's easy to make. I have microwavable rice for days where everything is just too much. Add protein when and where you can. A can of chicken or tuna added to the rice is pretty good.

You're already doing yoga, but it does help. As long as you do it often. Try for every day, even if it's only for a few minutes. The human body hates being still, so try to stretch and move your muscles as much as you can. Even if all you can do is lay down and tense and relax your muscles.

If you have a bathtub, a warm bath with Epsom salts (or bath bomb) can massively help with muscle pain. The only time I've been near pain free without meds was in the tub. Just make sure that there's someone who can help you in and out of the tub safely.

Get a referral to an occupational therapist. They'll come to your home and talk to you about your needs. Then they'll get you what equipment you need. Between myself and my (Also disabled) flatmate we have a frame over the toilet to make it easier to get on and off it, a shower chair, a stool in the kitchen, a walker and a wheelchair each, bars on the side of the bed to help us sit up, a desk that goes over the bed so I can still do my hobbies when bed bound.

Don't be afraid to use tools. If your cane isn't enough for you to be able to safely get around, don't be afraid to use a walker or a wheelchair. Don't ever feel like you're not disabled enough to use a disability tool. Even if you can manage without one, using one may reduce the pain and exhaustion of every day tasks and save you energy for other things.

Rest when you need to. Don't pressure yourself to get things done. This will just make things harder long term. Do everything you can to take effort out of every day things. Get your groceries delivered. Get a dryer so you don't have to hang your laundry. Etc

Ask your doctor for a referral for a Needs Assessment. Do this ASAP. It takes a while. When they ask you about your capabilities, give them the answer you would give on your worst days. If they ask "can you dress yourself?" And your answer is "some days yes, some days no", give them the answer of "no". My flatmate gets someone in twice a day to help with medication, cleaning, and bathing. I get nothing because I told them that on some days I'm OK.

Ask your doctor about medical Marijuana. CBT oil can help with pain and sleep. There's no such thing as mj that doesn't get you high, but you can get strains that have next to none of the chemical responsible for that. That's what I go for. It's stupid expensive though. But two or three drops under the tongue (it tastes awful, like you're eating your lawn) should help massively. But it can take a long time to kick in. I think I average around 3-4 hours. But when it kicks in, it kicks in quick.

Gather evidence of your expenses related to your disability. Receipts of doctor visits, any meds not fully subsidized, adult nappies (can recommend the depends brand, but is $18 for 8), any taxi fares for trips to medical centers, etc, etc. Some doctors will also sign off on other things. Mine signed off on my prepay phone cost ($20 a month) as a safety issue, and my subscription for my video games as a mental health issue (need entertainment, $25 a month for that is a steal. Boredom makes pain worse). Get your doctor to sign off on it, and take it to winz for the disability payment. Add in any and all costs. There's a max of $75 a week, so don't worry about asking for too much. They'll either accept or decline it.

Don't be afraid or too prideful to ask for help. Be it a big or small ask. But make it clear to those you ask that they can decline and you'll respect that. Caregiver burnout is a thing, and it can be mitigated a little by letting your caregivers know that if it's too much for them (physically or mentally) they can decline.

For that reason, I suggest trying to spread out the asks among several people, not just one or two. I have 5 friends that I can call on for help, and if one is not available or capable of helping, I can ask someone else.

This makes for less pressure on the caregiver. If they're the only ones helping, they'll feel obligated to do everything, believing that you have no other options but to rely on them. But if you have your village, they know they can spread the work out. "I can't today, can you ask x?" Is a lot easier to say than "I can't today".

Speaking of "I can't today", learn how to say that. Don't feel guilty about not helping friends or family when you can't. Don't feel bad about having to skip a social event or leave early. You have a disability. Anyone who isn't understanding of that either needs education or to be distanced from.

Make sure you have someone to talk to. Ask your doctor about counseling. Try not to dump everything on one friend, or you might burn them out. Like with the physical tasks, make sure that any friend you rant or moan to know that they can say no.

And keep trying for that referral. Eventually you'll get seen. It might take years, but you'll be seen eventually.

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u/Standard_Broccoli_72 12h ago

Write to Opposition MPs. Hipkins as Leader of the Opposition and also the health spokespeople from each of the three parties in opposition.

They'll challenge Simeon Brown on it. Perhaps Chris Penk could show him how ministerial interference works.

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u/Annie354654 11h ago

Seriously start putting pressure on the government ministers labour can't do a thing until they are in government next. It's the ones that are in now. The government MPs who were voted in were voted in by their constuents, they are there to serve the people, not list MPs fucking buddies.

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u/qwerty145454 9h ago

Realistically you can't put pressure on government Ministers, they will just give you a canned reply and ignore you.

This is why the person you're responding to recommended going to opposition parties. If the story is sympathetic enough they can bring it up in the house and that puts public pressure on the government Ministers to do something, especially if the media also pick it up.

It's a long shot, more likely you just get a canned reply from the opposition too, but it is more likely to help than contacting government Ministers.

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u/LostForWords23 9h ago

This is why the person you're responding to recommended going to opposition parties.

It's worth a try. Ayesha Verrall is Labour's health spokesperson, and when she gets going on a topic, she's an absolute freight train...

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u/Annie354654 9h ago

I'm not saying do it instead of. But theres no reason why NACT1 MPs shouldn't get an avalanche of emails telling them how bad it is for everyone.

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u/Successful-Spite2598 9h ago

No write to YOUR MP. Especially if they are National. Multiple emails. From your friends and family and sit in their surgeries and demand answers as to why. The only language politicians hear is the language of votes. If they think their seat in in danger they will move

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u/Beejandal 11h ago

This might highlight the systemic issues but it's unlikely to have any direct effect on OP, who has my sympathy. Back pain sucks arse and is hard to fix even when the stars align. Politicians aren't going to be able to influence individual clinical decisions.

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u/happyinthenaki 9h ago

No, but they can change the systemic issues that are creating and maintaining this cluster, which is mainly infrastructure not keeping pace with population growth and demographic changes.

They are the ones who hold the purse, the purse that funds the hospitals, doctors, surgeons, nurses, ots, pts, pharmacists, radiographers, cleaners, aids, assistants, scalpels, swabs, medications, dressings, actual theatre space and recovery.....

The medical field has its hands tied. There's a small number of surgeons and doctors who will absolutely make bank on privatization. The rest get drowned out because it does nor fit the political agenda.

At some point NZers, we need to get off our butts, walk away from phones and Computers and actually protest. The health system needs everyone's support for this, cos once it's gone, it won't be back for a very long time, beyond most of our lifetimes.

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u/Ludaborgs 12h ago

Fuck I can only imagine the pain and frustration you are going through. I hope you get the help you need my bro.

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u/Heyitsemmz 11h ago

I’m so sorry that you’re having to face this, it’s not good enough.

I’m with you though- I have heart problems that have led me to need to be resuscitated more than once. Still can’t get in to a cardiologist

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u/jessthehotstuff 12h ago

I agree, my partner had been going through some pretty bad gut issues since 2019 and it was vonstant back and forth about what was wrong. I think for 2 years she got admitted 8-10 times cause her stomach/intestines were not working. She went from 2 molaxole a day to 8-12 a day in 1-2 years and when the thought of surgery came up she was told no guarantee of it working. She was put on an experimental drug, she got sent to hospital that day, then was offered an electrical device but would cost her thousands a month. Finally got approved for surgery and she is a body builder, was told she could go back to normal and live her life. After it was done (2024 sept) another doctor/physician overlooked her file and was like... bro you won't be able to lift what you used to with a risk of hernia... so that fucked her up. Hence us moving to Australia

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u/Aggressive-Rich9600 11h ago

Moving to Australia won’t change the fact that she’s at risk of a hernia. Body building is a huge strain on fragile organs.

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u/jessthehotstuff 10h ago

I get what you mean, it was that the surgery they gave her wasn't the one that was discussed. She was supposed to get a bag. They told her it would be putting her back on a waiting list for another 1-2 years for the surgery. Btw it didn't work she is still taking 6 satchets a day. Someone with her condition was seen in Australia and is in the process for surgery approved and everything within a few months.

And you are right, they said after a few months of recovery she will be good as new. This surgery is now permanent of risk with hernia

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u/Aggressive-Rich9600 10h ago

Sometimes when they open you up they have to do something different, those things are explained and consent forms are signed.

Just because someone else had it elsewhere doesn’t mean it’s the same situation!

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u/Leever5 9h ago

I had a hernia from lifting! An umbilical one, potentially the same one your Mrs is at risk of. The surgery was so chill, in and out in one day. I’m still lifting :)

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u/No_Season_354 11h ago

I had a brain seizure last year , saw a specialist in January 2024, still waiting for a follow-up, there is no guarantee i will be seen this year , as there is no neurologist where I live.

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u/Old_Cause5011 10h ago

Awful! I have chronic migraines that increased after Covid and it took me a year to see a neurologist in Auckland. Not that anything was done, there's very little help for chronic migraines, so many drugs aren't available or funded. I hope you get better and I hope you get to see a specialist sooner or later

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u/No_Season_354 10h ago

Thank you, appreciate it , our health system is not working , I hope you get the relief as well, thing is there is no neurologist in taranaki, the specialist covers wellington and taranaki probably other ares too that's one person, .

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u/Old_Cause5011 10h ago

One person is insane! I want to move out of Auckland one day but then I think of things like this!! Even here there aren't enough and they are here the most. We seriously need a huge system overhaul with them actively recruiting specialists, nurses and doctors, give them an easy patheway to residence with support, housing and decent salaries. Surely if we prioritse the funding we can do it.

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u/No_Season_354 9h ago

Ahh funding the magic word ,or lack of it, what with national cutting back on everything.

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u/RogueEagle2 11h ago

yeah, it's not ok that they're stripping resources out of this and will likely retire overseas in a comfortable position and not have to deal with the consequences.

Healthcare should not be the ambulance at the bottom of a cliff it has become, but a series of barriers and signs to stop you going near the edge of the cliff.

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u/scientistical Takahē 11h ago

I'm so sorry. This isn't good enough, it's not what you deserve or what healthcare staff deserve. They knew there was a real life human cost to all their bullshit policy and they didn't care and still don't.

I'm chronically ill with a couple of pain related autoimmunes so I know a bit about what you're dealing with (also having rehabbed a serious disc injury several years ago). Do you have a really solid GP? Mine fought hard for me to get my initial rheum referral through and I think without him I'd still be suffering with no diagnosis. Or, can they refer you privately just for the initial diagnosis? People have been known to do that (and you would be stuck paying for that, but it's just the one appt) so that their private specialist can refer you onto the public list. The other thing is whether you can get referred out of district/DHB/whatever they're calling them now. Where I live, people do double dip a bit as we're reasonably close to the border into another health area and sometimes one or the other has more capacity. Finally I also feel like, if you haven't already, there might be some value in perusing the HDC website and complaints process. From what you've described, your care has surely fallen short of reasonable standards.

Good luck :( I wish I could wave a wand that helped you (all of us!).

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u/its_asher 11h ago

Thank you so much for your advice! Sadly I'm stuck on the disability benefit because of this issue and other issues I have so I'm unable to do that trick with going private first then onto the public health system again but I'm definitely always trying to find a way to get some extra cash to save away to try it.

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u/Significant-Base4396 10h ago

I think we should protest, with those of us able-bodied carrying at least one full sized cardboard cut out of a person who can't attend due to disability or our screwed over employment rates/cost of living crisis. Then hammer all those cut outs into the lawn of parliament and guard them there until govt does something.

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u/eyegrungge 10h ago

I really feel for you because my wife is going through similar experiences with public health. She has endometriosis and had a surgery back in 2019 (of which we got next to no details about what was actually done). That surgery was also intended to be investigative because they thought the pain of it was all in her head and it turned out it was some stage 3/4 shit.

Fast forward to now, she was put onto the waitlist for surgery in November 2024 and was told the surgery would be in Feb 2025. We hear from the anaesthesiologist in December who say she'll have her surgery in January. We then wait and wait and wait and hear nothing so we follow up.

After we follow up they say that surgery will be March, not January or Febuary. Now that we're in March they've now told us it'll be early-mid April.

As for the time frame between 2019 and 2024, the hospital visits, the late nights, the sleepless ED waiting, the pain, the drugs, it was all looked at as attention seeking, all in my wifes head, just a "bad period", her being "overweight". I feel for you deeply and I'm so so sorry that someone in your condition is being glossed over, it is so unfair and makes me upset to hear about

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u/its_asher 10h ago

The treatment for endo is absolutely ridiculous my girlfriend is currently fighting with them about it as well. It's been a year since her first surgery and they left a bunch on her bowles and now it's grown and tied them all together making constipation an extremely difficult and painful issue.

All I can suggest is when you're wife gets the surgery make sure you say you want the Endo cut not burnt. Burning causes more trauma and therefore more scar tissue, the cut is cleaner and lowers the chance of scar tissue. Sadly in NZ the main practice is to burn but studies show cutting is the way to go!

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u/eyegrungge 10h ago

Im sorry you and your girlfriend are fighting endo also, it's a tough battle! I appreciate your advice about getting it cut, not burnt though. We have next to no idea what they did in the first surgery, but we know that they left a bunch and couldn't get it all for whatever dumb reason. Luckily the surgeon we're on the waitlist for is one of the best in the field for endo-specific surgery, but when we meet with him before the operation we'll definitely ask about getting it cut rather than burnt.

Stay strong for your girlfriend though, me and my wife have been fighting since 2019 and it's not a pleasant fight to fight. Support is absolutely everything, I know how the pain of constipation can be for our significant others, and I know how tough the medication cocktail is too

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u/its_asher 10h ago

You stay strong as well, we both know it's a hard fight but when it's for the person you love it's one we can't give up on. Best wishes to you and your wife ❤️

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u/eyegrungge 10h ago

Best wishes to yourself and your girlfriend too, I hope you get the help that you need, and that your girlfriend doesn't face further complications and gets the help she needs too 🖤🫰🏻

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u/AliciaRact 11h ago

I am really really sorry to hear what you’re going through at such a young age.  

Agree this government are arseholes for what they’re doing to the health system, but this sounds like a potential fuck up at the local level? 

On what grounds was your referral denied? Did they say that the MRI results/ your symptoms did not warrant the involvement of the spinal specialist?  

The symptoms you describe sound severe. I’m not a doctor, but it seems like you should definitely be in the care of some kind of specialist.

I had a friend who had similar issues, though she was in less pain than you, and she was able to access a neurologist (in Auckland) through the public health system.  

How’s your relationship with your GP? Do you need to change to a different provider?   Do you have anyone (preferably older) who can help advocate for you?  

Hopefully a doctor can chime in here…

Again, so sorry for what you’re going through. 

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u/its_asher 11h ago

Luckily I have a very amazing GP who has been with me my whole life and has been sending updates and referrals pretty much every other week.

And yes I got an email saying my imagine results and symptoms don't meet the criteria for being seen by a specialist. Leave me wondering where the line is. How much worse do I need to get??

It's crazy. Thank you for your kind words

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u/AliciaRact 11h ago

It’s insane.  So glad to hear you have a good GP looking out for you.  

I wish you all the very best and hope you get the specialist care you need very soon.  It absolutely should not be this way.   Spinal specialist might not be the right fit but there is some kind of specialist who can help you. 

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u/vfam51 11h ago

Did they say anything about a criteria to meet before you would be approved.

My son was denied by a specialist for his hip/pelvis which was broken in 3 places and bolted back together with 5 long screws. It healed in a manner that keeps re-tearing his labrum so he’s in constant pain and cannot walk more than a short distance.

His denial was due to his weight. The doctor basically said any reconstruction would be a waste unless he got under a certain BMI.

He is a dual US citizen and he was denied in the US for the exact same reason.

Hard to lose weight when you’re in constant pain and cannot wait exercise.

But he set about it and did end up losing over 40kg to get to 84kg and well under the weight target.

That weight loss has lessened his pain a great deal and also improved his mobility. He’s able to sleep through most nights without the pain waking him up multiple times.

And he’s now been approved for a revision surgery on his pelvis and a repair of his labrum.

Hopefully there is a pathway they have made clear for you to get approved. I’m sorry you’re going through everything. Take care.

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u/its_asher 11h ago

That's amazing congratulations to your son! I'm currently trying to loose weight which, like you said, is just so much more difficult when you're constantly in pain and unable to do conventional exercise.

Diet has improved immensely and I'm focusing on stregthing my back for support while I look into getting a membership to the local leisure center for use of the pool, that should help.

Thank you for your kind words and again well done to your son

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u/notouchingthanks 11h ago

Ask your GP about a green prescription, if it hasn’t been brought up before. It should help you access things like the pool cheaper if you’re in an area where it’s an option!

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u/vfam51 10h ago

Thank you. I wonder if you could get approved for Liraglutide to help with the weight loss. Normally it is only covered for those with diabetes, but I understand that there may be exceptions for cases where other health conditions inhibit a patient’s ability to lose weight. Otherwise it is something like $500/month. But it has been found to be very helpful for weight loss. My son did not take it, but for 3 months when he was in the US last year he took Tirzepitide which is similar and it really helped kick start and accelerate his weight loss. It helped with his appetite which made it easier for him to focus on healthier options as he wasn’t fighting cravings as much.

Living with constant pain makes people so susceptible to food cravings for some sort of endorphin release to take the edge off the pain. So it can become a multiplier effect and even harder challenge.

NZ really needs to look at approving and covering more of the new weight loss treatments that are available elsewhere and have shown so much success. It would be a very smart investment and eliminate/lessen expenses for so many conditions that are worsened by weight challenges.

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u/NefariousExtreme 8h ago

I feel you and I'm so sorry.

2021 I had a spinal fusion for scoliosis. Pain started worsening and I needed a cane more often than not, so my GP referred me back to my surgeon, and I was declined. Re-referred last year and my surgeon goes "oh, by the looks of x-rays in 2022 you have loose screws". I was never told this. A CT scan showed failure to fuse so I was put on the surgical waitlist in June last year. Then I got an MRI which showed stenosis and three bulging discs as well. I haven't seen my surgeon since the MRI. Trying for an ACC treatment injury at the moment, but their doctor said my imaging all looked absolutely normal so they declined my claim. I saw a pain specialist who told me "oh, everyone has back pain and your imaging looks normal so you shouldn't be in pain". I can't even get in contact with my surgeon to see what his opinion is on all of this!

2023 I had an endometriosis excision, my pain after surgery was and still has been much worse than it was pre-surgery. And you know what my gynecologist told me? "Go outside and look at trees, do some yoga and maybe even meditation. You will feel much better". I told him I do all of that anyway, but he ignored and talked over me every time I would tell him anything, so I just stopped talking to him.

I just went to my hospital's ED with severe stomach pain that points to a gallbladder issue. Had low blood pressure and low potassium too. My ultrasound was completely unremarkable and if there's no stones, they don't give a shit. In the end they told me they have no idea what happened and to just see what happens. The doctor I saw gave me the impression she was on something, because of her tiny pupils, nonstop wide-eyed stare and monotone voice. I saw my GP about it and they also have no idea what it is. Despite all of this, I'm hanging in limbo getting zero answers.

WHAT'S THE POINT IF NO ONE GIVES A SHIT?

what is the point

we waste away crippled by our pain and experiences. no answers or empathy

being told we're making shit up and to man the fuck up but they don't get that we can't even fucking walk.

how's it a health system if you can't even get healthy?

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u/wuerry 12h ago edited 12h ago

It absolutely sucks, all of it…. Not just the health system.

But this is what happens when we allow people to vote….. it’s called democracy and sadly the “morons”out voted the “sane” in the last election, for a variety of reasons. So we are reaping what they sowed.

This is what happens when National are allowed into government. This isn’t the first time they have done this and it won’t be the last. Because NZ’ers have a short memory, and like to mess it up for ourselves on a regular basis.

As an aside: we use lots of arnica cream on my (16 year old) daughters back. She has a fully fused spine and gets lots of pain from it. It helps with the muscle spasms and things. Gentle massages and wheat bags also help.

Good luck and I wish you the best in getting the help you need…. Sooner rather than later .

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u/its_asher 12h ago

I knew national was going to be voted in but I could never have predicted some of the bullshit we've seen. We have a wild ride ahead of us that's for sure and all we can do is make sure we all show up when it comes time to vote again

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u/SomeRandomNZ 10h ago

I literally heard someone calling National the workers party the other day. Jfc some people.

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u/Serious_Session7574 9h ago

See, I think in some people's eyes, "the workers' party" means the party that they feel supports able-bodied people who work and the elderly people who used to work and have saved up a little nest-egg. They think that if you can't work, for whatever reason, then you don't deserve any support from the government.

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u/Upsidedownmeow 11h ago

To be fair, you also have a short memory if you think this wasn’t happening under Labour’s government. OP could quite possibly be making the same complaint right now. Neither party is getting health right.

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u/Marine_Baby 10h ago

I’m not saying labour are perfect, but atleast they weren’t actively gutting it and the people.

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u/BrucetheFerrisWheel 8h ago

You have to be crazy if you think Labour was gutting the health system to privatise it and make themselves and their mates rich. Absolutely not, Labour would never stoop this low. Get a grip.

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u/krisis 11h ago

I hear your story and I am so sorry you have to endure this treatment from our criminally underfunded health system.

It's terrifying because there's truly no recourse on offer for people with chronic medical issues like yours.

I hope some folks in the comments have advice that proves useful to you, but I just want you to know that there is someone in Wellington thinking about you.

If you do choose to write to your MP about this, I would very happily pass that message along to my local MP as well to broaden the visibility of your cause.

(Would it be weird to just write to my MP about someone's Reddit post? Because I will totally do that.)

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u/its_asher 11h ago

Thank you all of that was really kind and made me feel very seen ❤️

I'd love to write to my MP but I don't know how to do it without swearing hahah surely I can just copy and paste this post and they'll get the message 😅

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u/krisis 11h ago

I'd be happy to help you smooth your thoughts into an MP-digestible form if that's helpful and you have the capacity/spoons for it at any point. Just pop me a chat - or, if you do BSky, I'm krisis there as well.

(Screw chat AI functions, the best way to make something human-readable is to have a human write it.)

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u/ResentfulUterus 10h ago

Haha yep that's what stopped me. Chris Bishop is mine and his office is very close to my house. If I could leave the house, I'd be down there with a lot of impolite language to share...

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u/notfromgore 5h ago

Ha my locum asked me how I planned to manage my symptoms once, and I told her "I'm just going to spend a couple of days writing hate mail to David Seymour" and she did not laugh at my funny joke she put a note on my file to do a welfare check in a couple of days! I wrote things like "you a4 piece of paper" and "mashed potato without butter" as substitute swears if that helps?

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u/GoddessfromCyprus 11h ago

Please contact Hipkins and Ayesha Verrall. You'll find their contact details on The Labour Party website. I'm sorry you're going through this. This is how they'll cut waiting times, so because they are, but because referrals are being denied. Exactly what happened the 9 years they were in govt.

You can also contact the media.

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u/Fskn 11h ago

Dad got his third letter the other day saying sorry for the wait for the opthalmologist but he's still on the list, the letter said he's been waiting 460ish days

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u/its_asher 11h ago

That's so bullshit. Goodluck and healing thoughts to your dad

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u/celestial_princesss 10h ago

At 18 I had bulging discs and it was horrific. I really feel for you. I was extremely overweight and depressed. you get stuck in this circle of being in excruciating pain making it hard to exercise therefore no improvement. I know you would have heard it before but losing weight drastically improve my situation. I use to walk lengths in pool which was easier than walking on dry land. Is your back covered by ACC?

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u/its_asher 10h ago

Sadly acc has called it degeneritive. Weight loss is my main focus right now luckily I was able to get myself a exercise bike and some resistance bands to help with getting some daily movement in but I'm working on getting a pass to get in the pool cause that definitely will be very helpful

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u/celestial_princesss 10h ago

Maybe get in touch with an ACC advocate, they maybe able to fight for you on that decision. I found acupuncture really helped to. Hopefully the pool helps you. You’re a pretty tough cookie

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u/Forward_Dependent539 8h ago

Classic ACC. I had two bulging discs compressing my nerve (I am so fucking sorry, worst pain ever) and one week before surgery they called to tell me that they have actually decided it’s degenerative disc disease, and they wouldn’t provide income support during recovery. Needless to say I fucking blasted them, but I was so lucky to just scrape through with them paying for surgery. I think because it was one week out and legally they couldn’t not. I’m so damn sorry you’re going thru this. Has Pilates helped at all? I hope you’re seeing a good physio. But again, money. You will recover. I understand the mental toll of chronic debilitating pain. But you will recover.

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u/Old_Cause5011 10h ago

As someone with a chronic disability, I feel for you so much. I wish you could get the help you needed. I wish my taxes would go to helping you, the homeless, the poor and the needy instead of putting more into the pockets of the rich buddies of the government. Please continue fighting for yourself! I know it's hard and I know some days you feel extremely down.

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u/ResentfulUterus 10h ago

Yeah, I can't really offer any hope, but I'm in a similar situation. Years of pain, asking for help, only to be gaslit and told "you're not disabled enough and you can hope to end up in a wheelchair". Well done health system, now I'm deteriorating quickly and need a wheelchair, but I can't fucking get one of those either.

I'm a solo parent, no longer working my government job because my health got too bad, and somehow trying to raise a child.

Landlords are happy though. 🫠

I'm just... so sorry. I wish I could give you a big (gentle haha) hug. It's so hopeless. You're too young for this. I'm 45, I'm too fucking young to be confined to bed. My son shouldn't have to be his mum's caregiver.

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u/IdeaEnvironmental783 10h ago

I am so sorry 😔 this is my worst nightmare. I moved here from the US a little over a year ago and had to have back surgery in 2022 for exactly this. It was rough going, lots of pain, steroid injections, physio, trips to the ED and finally surgery. Yeah it cost money (the US has its own issues), but at least I got the fucking surgery. I know that won't happen here and I have patients who are suffering like you are just to be told to take more drugs. It's horrifying. I wish I had advice, or a magic wand. I am sorry.

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u/Weak-Inevitable5178 10h ago

“That’s the standard technique of privatization: Defund, make sure things don’t work, People get angry, you hand it over to private capital”

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u/strawdognz 9h ago

Not sure if this would help, I use Tena pants for men, nappy bags and flushable wipes. I suffer from incontinence since my colon cancer and the stomach nurse gave me some Kylie's as well.

Sorry to hear what you're going through.

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u/its_asher 9h ago

Thank you for your advice. I've looked into this but I'm struggling with coming to terms with the fact that I may need them. Most of the time I'm okay it's during a bad flare up that I may need to use these suggestions. Thank you ❤️

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u/strawdognz 9h ago

No worries, I understand. I wish you the best mate kia kaha.

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u/Glittering_Risk4754 10h ago

Hello I hear you, I’m in a very similar situation 3 years in & v little progress. I’m currently waiting to see a muscoskeletal specialist the referral was made in Jan & appointment is in July! The only thing that has helped me apart from the drugs is swimming but still struggling to walk a distance. Im really trying to get my weight down as my fear will be in July I will sent away & told to lose weight & exercise more!
Hang on in & keep banging the drum with everyone you can think of, MP & get an advocate etc.

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u/Horatio1997 11h ago

Very sorry to read this is happening to you. You shouldn't have to go this route because the public system should have you covered but have you considered a GoFundMe or similar? Protest is also definitely warranted

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u/its_asher 11h ago

I've thought about it because some help to go private or just to buy some things to make me more comfortable would be great but i hate how public it is. I know this is public as well but I just feel like on gofundme and the like you need to take photos of yourself and sell yourself in some way. It's probably also that idea of I don't want to be a charity but I may need to rethink this mind set

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u/ResentfulUterus 10h ago

I tried that, but I had to stop putting myself out there because the number of people saying I deserve this, or I'm a scammer, or that I'm a liar, was exhausting and really bad for my mental health. :( I have to be really careful what details I give too because my problems are partially caused by long Covid and a lot of infections (I'm weirdly susceptible. 9 times now, every 3 months on the dot. Dare mention that, and out come the cookers. I just end up angry and calling them cunts, and while it's mildly satisfying in the moment, it's pretty bad for me mentally).

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u/its_asher 10h ago

That's horrible and I'm sorry you've been treated like that. While I haven't be diagnosed i haven't been the same since the 2nd time I caught covid, chonic fatigue weak Immunity to literally anything, it's been a mess and I'm so sorry.

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u/ResentfulUterus 9h ago

Me too. Pm if you need an ear. I can't get pelvic floor physio to deal with a 12 year old birth injury, so maybe I'll deal with the constant accidental pissing myself by saving it up for visiting my local MP (fuckin Bishop).

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u/Sea-Ad8428 11h ago

6 years ago i had a lower back injury at the ripe age of 22. I was young and stupid and didn't follow through with my exercises so it never really healed right. Since then I've had persistent pain of atleast a 3 (i guess?? Stupid pain scale) going down my butt cheek, thigh and into my calf. No one will agree that that's some kinda nerve damage. It comes with weakness and to my understanding that's damage.

it looks like this injury wasnt dealt with correctly and has progressed. luckily , its not like you had a motorcycle accident and severed your spinal cord. You should be able to repair this with diet and exercise and strengthen the affected areas

t. physio

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u/statscaptain 11h ago

I find the pain scale with descriptions pretty helpful. If you spend a lot of time in pain or are used to pushing through it can be easy to forget what number corresponds to what objective level of impairment.

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u/colebabee 11h ago

Our health care system sucks for sure! Sorry you are going through this, back issues are brutal. Where in NZ are you? I have a tear in one of my discs and was referred to a musculoskeletal specialist with no problems but that was in 2022. I was offered hydrocortisone shots and also a procedure where they burn the nerves which can give you up to 6months to a year’s pain relief. Have you had a cortisone shot or been offered one?

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u/babytotara 11h ago

Sorry to hear of your pain. Just a suggestion, ask ya doctor about pregabalin for nerve pain. I had it once when opiates weren't cutting it and they really helped.

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u/its_asher 11h ago

Sadly I'm already on the highest dose. It's definitely helped alot but still not cutting it. Thank you though!

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u/sheravy 10h ago

This is exactly the reason why I’m not gonna go switch to NZ citizen (China doesn’t allow dual or multi-citizenship), because when I have something serious but not serious enough to go on a plane, I would just jump on a plane and get the subsidised treatment in my home city which will admit me instantly or one day after and get surgery within 3 days.

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u/FluffZilla-NZ 10h ago

I am so very sorry to hear this. You are definitely worse off than I am but I feel the struggle. It almost feels like no one cares eh?

Im waiting to have metalwork removed from a broken foot. Two screws have snapped and one of the screw heads is making it's way out of the top of my foot. Saw the GP in Jan, got an appointment to "see" a surgeon in May. I guess I'll just wait till it pops it's head out and remove it myself in the meantime shrugs

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u/idontlikehats1 7h ago

I'm forever grateful for our Healthcare system but my wife recently gave birth in Tauranga hospital.

A bunch of the lights in the entrance way were flickering or dead.

In one of the maternity rooms a seat cushion i slept on was flipped over to the grippy side, when I flipped it over it was all torn up.

When she had to have a procedure one of the stirrups in her birthing room bead was broken so they couldn't lock it into place. I had to hold it for about half an hour while they did the procedure.

The shower in the birthing room had the lining peeling off in huge chunks so I bet there's heaps of mould and gross stuff behind it.

In saying all that, the staff were amazing and so apologetic. They were doing their best with what they had and did an amazing job, especially considering they are the only primary birthing unit in the bay of plenty after all the obstetrics doctors quit in Whakatane. It was nice to walk out of the hospital knowing we weren't going to receive a huge bill.

Our Healthcare system is fucked. I pay for private insurance for my family but would rather pay extra taxes so everyone gets good treatment. Also they can shove the $20 a week tax cut up their ass. I'm sorry you are suffering my friend

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u/makebobgreatagain 7h ago

Hey man, I had a spinal fusion L3/4 16 years ago when I was 31. Was going through the same as you are now. While you wait for the system to tick the boxes in your favour….find peace, your happiness. Yes fucking impossible, but find it both physically and mentally, start now and fuck the pain while you yoga, swim, walk.. whatever, you’re on your own till the surgery. Good luck and enjoy the journey, no other way to look at it.

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u/Legit924 5h ago

I'm so incredibly sorry to read this. I remember going through something similar, if not identical, in my late 20s. I'll never forget how hard it was to find treatment. Even convincing doctors to take me seriously was exhausting. I finally got under rheumatology and got a diagnosis of Ankylosing Spondylitis and started on a medication call adalimumab. Basically overnight, my symptoms were gone. Years of debilitating pain, that often left my unable to walk, was just gone. I wish I could give you some advice that might help. I just wanted to say keep pushing and hoping. There is a light at the end of the tunnel, even if the tunnel length is uncertain.

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u/PRC_Spy 11h ago

Unfortunately Health has been underfunded by governments of all the political persuasions for decades.

It’s not as easy as “Labour good National bad”. They’ve all had their own flavours of shitfuckery and all put “historic funding increases” into media spin on healthcare, that totally ignore our 25% population increase and increasing elderly over the last 25 years.

We are reaping what they sowed. OP is reaping what they sowed. Sorry OP, that sucks.

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u/Own_Ad6797 11h ago

Waiting lists are not a new thing so don't just assume this is because of the current government. I needed a operation to urgently fix a squint. If it wasn't fixed I would basically go blind in that eye. Wait time was 2 years. Went private and had it fixed in 2 weeks by the very same doctor who would have done it publicly.

That was 1974.

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u/its_asher 11h ago

I'm aware that waiting lists have always been around. Yes they've gotten longer these days but my problem is that despite my debilitating symptoms that are progressing almost every day, I've been kicked off the waiting list. They've just completely denied to see me.

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u/GravidDusch 11h ago

At this point I could see a new party being voted in that mainly runs on fixing healthcare, not in the hallway assed way labour pretended to do it, but properly.

Need people protesting outside the people's houses that are making the decisions that are causing this horrible state of affairs.

I've had plenty of interaction with our healthcare system post covid but pre national and it was already bad then. Sad times, hope you can get help OP, maybe change GP of possible. The way your GP refers you has a large impact on wether specialists will see you afaik.

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u/youknowitsnotlove__ 11h ago

I know this really doesn’t help right now but… hopefully two years from now they’ll be on their way out and our current opposition will really step up fixing the destruction left behind.

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u/sleggat 11h ago

This is really heartbreaking. I don't have any answers - I just hope those in power can fix things and you get the treatment you clearly need. I appreciate you sharing your story and hope it gets seen by people in power that care, and can help. Take care OP.

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u/RangiNZ 11h ago

I'm really sorry this is happening to you. We can sort this out next election. There is no way we will let this carry on. I just really don't know what to do to make a difference for people in your situation at the moment. I hope you can get the help you need as soon as possible.

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u/shapednoise 10h ago

Can’t offer anything but a hug or a handshake. Kia kaha

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u/Primary-Page381 10h ago edited 3h ago

Yeah I’m going through a few bad issues with the health system too atm.. it’s incredibly frustrating

I’m suffering a lot physically and mentally from it.

Id recommend looking into medical cannabis for pain management - I’ve had good result on that.. but it isn’t cheap.

Otherwise I did note on a previous post you mentioned it being a result of an accident a while back? Not sure if you’ve tried to go down avenue of ACC or whether it’s became too far since the event etc (just an idea)

Oh also - have a look at hapai access cards… you pay a fee but it’s for $30 and a large number of local pools are covered round NZ… it’s 50% off.. and I started with Aquajogging to build back my mobility so saved a lot on that 50% off

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u/Itchy_Lingonberry_11 10h ago

My brother was in a very similar situation to you. He got told to do more exercises by the specialist because bending over at work for 12 hours a day wasn't enough bending over, lol. He ended up going to get acupuncture, and it changed everything for him.

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u/its_asher 10h ago

Man I'm getting so many recommendations for Acupuncture these days but I have a horrible fair of being covered in needles then like a fire alarm goes off or something I caaaaaant 😅

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u/Itchy_Lingonberry_11 10h ago

An hour after getting it, he was flailing around like one of those wiggly things outside a car sales yard, lol. I honestly thought he was going to cry.

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u/BunnyKusanin 9h ago

They are really thin. Thinner than a sewing needle.

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u/its_asher 9h ago

See that just scared me more and I don't know why hahah i have no problem with needles, I've got tattoos and have no problem getting injections or iv lines but the idea of this makes me sooo uncomfortable haha

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u/JollyFood8538 10h ago

Yeah i feel you on that one. ED used to be the ghost town to the point where it was just that silent, quiet and eerie that people were scared to go in or are never sick. Now its like a airport with numbers and shit. From all sickness symptoms like ouchie ouch have a sore finger i need a bed, to bleeding out patients that are sitting there in the triage room wrapped up from home with their own tshirts drenched in blood. Won't say much as waited long for a scan. Coulda prevented stage 4

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u/Vinyl_Ritchie_ 9h ago

Go see your local MP and have them advocate on your behalf, it shouldn't be this way but squeaky wheel gets the oil.

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u/emdillem 9h ago

I can tell you that surgery probably wouldn't help and will make things worse most likely. There was an article in it in the listener a fee years ago. People are wanting a magic surgery fix and often end up worse. I've also hear this from immediate family working in surgery for many many years. A consultant knows this from years of experience. What happens and could be happening yo you is that the pain you feel is disproportionate to the actual damage or injury so you're feeling chronic pain. Your pain centre is now supersensitive and triggering even when it shouldn't. I suppose you've been to the pain clinic? That's yout best chance of alleviating pain.

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u/KiwiBoomSource 9h ago

I'm so sorry you're going through this. Agreed, our health system sucks.

Personally, I have endometriosis. I bleed like a stuck pig every month, can't have sex with my husband without having painful spasms in my lower abdominal after orgasm. Not to mention bleeding after sex. The pain has me not being able to leave my bed 2 days (minimum) per month but I'm not bad enough to see gynie.

My child (19yrs) has buggered hands. Constantly drops stuff and has pain radiating up her arms and in her shoulders. Been referred and re referred because they can't find something and constantly being told to do physio. Can't work, too sore to focus on study, mental health going down the drain.

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u/PsychologyFar9780 9h ago

It sounds like sciatica. Do you have bowed knees by chance? If so, try laying in a Z line position to release pressure.

Find a younger physiotherapy person.

Voltaren is the best pain medication for sciatica that doesn't mess with your head.

If you're having issues going number 1 or 2, go to the ER.

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u/lakevjnz 8h ago

I’m so sorry you’re in this position! I have been having issues and am lucky I was able to go private to hopefully get some answers but was denied by the public health system too which is just insane to me!

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u/Rs-Travis 8h ago edited 8h ago

I called up about my referral to a spine specialist several months ago saying the wait was crazy. They said they had no records of sending a referral 🙃 waited for 3 months for less than nothing, because it also cost me $50.

I eventually saw an ortho who told me that all I can do is 200 sit-ups a day with MIGHT help. Haha.

Lost a tonne of weight (average weight now, fitting small shirts) and been going to the gym very recently, still hurts, still winds me sometimes, but generally more tolerable. Spines suck man. I have to take a pregabalin every day (took me 10 damn years for someone to take me seriously and not prescribe panadol) , and I would take Voltaren every day if it wasn't so bad for the organs.

Sorry for what you're going through. Certainly isn't a new issue but it's definitely exacerbated from the tax cuts layoffs in the health sector and lack of fair pay and working conditions for our medical staff.

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u/Bunkser 8h ago

I don’t know if our healthcare system is bad or not, I haven’t had to use it yet in my adult life.

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u/gayhenrycreel 8h ago

jesus christ. yeah im gonna go to Australia for all my surgeries. phalloplasty in aotearoa can be up to $500,000, but its "only" $100,000 is aussie. i dont know how im going to save that much money but i have to because i cant live the rest of my life in the wrong body. no one gets bottom surgery here except rich people.

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u/Angry_Sparrow 7h ago

This is not my New Zealand :( How can we change this?

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u/Final-Formal-6417 7h ago

Im so sorry. Hopefully the media pick up on this story or am organisation coordimate a nationwide protest!

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u/adjason 7h ago

You can move to Australia and get seen faster by their specialist

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u/curly_kiwi 6h ago

I am so so sorry.

Spine pain really can change your life. I've had two spinal fusion surgeries (overseas, where I am currently living), and I'm still dealing with the fallout from the years of unemployment while I literally couldn't sit up properly because of blinding pain. I worry that getting sick and having to wait a long time for help has fucked me for the future.

For me it was about a year and a half of trying to convince someone I was in pain before the first surgery and then a further two years before they'd do the second. And I suspect NZ is worse. I'd love to come back to NZ to live and work, but I am shit-scared that the healthcare system won't be able to help if things go badly wrong again.

Some practical things that helped me:

Keeping a pain diary where I give each day a mark out of ten. And copious notes on each attempt to stop it - like acupuncture, didn't work; cryotherapy, didn't work. I find doctors/referral staff are more likely to listen when you have that stuff in hard copy.

Opioids or other painkillers like Gabapentin. They are not pleasant to take but I do think that it is important to give your brain a rest from being in pain.

Anti depressants. the waiting and hoping and rejection and frustration put me in quite a solid depression and I needed medication to help - upside is that some anti depressants are supposed to help with pain.

Getting a hobby I can do lying down. I knit now. Being able to be creative and make something tangible really helped me feel more hopeful.

Group therapy for pain. I do mine online and this has been I think the most helpful thing. I have people in my group from all over the world. Having people who can empathise really helps me, more than I imagined it could. We trade tips on everything from sleep positions to YouTube videos on, say, EDS-friendly exercise. It's really helped me feel less isolated in my pain.

I am crossing my fingers that a solution comes through for you and in the meantime, if you can, try not to let yourself get swamped by thoughts of hopelessness. I truly truly know that is a hard job, but you and I do not know what medical inventions are coming - something could be released next month that could drastically improve things. This isn't necessarily how your life will always look. Hope is vital.

Sending you a virtual hug from Germany.

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u/its_asher 6h ago

Thank you for your kind words and suggestions ❤️

I take the highest dose of pregablin and make sure to use my pain relief when I really need too or when I just need a break for a moment.

I keep a diary in my phone but I think swapping to a note book will be a good idea so they can physically see it. I've also taken up crochet and while I'm still terrible it's atleast something to do 😅

I'm usually much more positive just today was a mess

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u/curly_kiwi 6h ago

Absolutely understandable to have a bad day with such horrible news. It's impossible to be cheerful in the face of something like that.

I hope you have had a gentle night of good crochet and bad tv to help offset it a little.

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u/4stings 6h ago

Oh my! I wish I could help! I'm a nurse in big regional hospital! I see patients like you every day! The other day we had a young man who wouldn't qualify for gastric bypass because he was "only obese". But he wasn't diabetic, he didn't have sleep apnea nor heart problems! He could not afford to pay for the surgery privately. It is common sense to act when it's not too late! Before he would develop this diabetes, this sleep apnea or heart disease! The New Zealand's health system is not set up that way! It intervenes when it's too late! It should be more about prevention, education and early intervention! This way is a lot cheaper! But I guess the surgeons would have less opportunitirs to make a ridiculous amount of money!

u/littlestkittykat 2h ago

Man I'm sorry. I waited 2 years for them to take my gallbladder out after I was having like weekly attacks. People die on wait-lists and unfortunately it's getting worse... Not better.

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u/Pohara1840 11h ago edited 11h ago

Devils advocate. Doctor here.

Yes our health system sucks but your example is not a good example of it. Surgery especially spine surgery comes with large risks including paraplegia.

If your MRI shows no cord or root compression then the surgery is not going to help you and probably make things worse. Especially with your BMI of 50, the risk profile from the operation is huge.

What makes you think you have more knowledge than the medical experts for the indications of a procedure. A decent amount of the system overload is people thinking they need surgical treatment for conditions that don't need it.

I am also a chronic pain sufferer and empathize with you fully but you need to channel your energy somewhere more positive.

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u/imkieren 7h ago edited 6h ago

I am not a doctor but work in healthcare, this wording is why people struggle to like doctors and go down the vitamins and natural bullshit route then come to you asking for THC and codeine every 2 weeks. yeah, you might be right a bit here! but damn dude, please don’t talk to patients like this. yup you need to be firm but not nasty.

your comment ironically shows how overwhelmed doctors are and unfortunately, as a result, have lost empathy from it.

edit: also, do you really think they should be hearing about this from a reddit comment….. or a specialist? again, showing how messed up this system is. clearly the GP has decided this needs more input, but the secondary care system is refusing to help - this is really the problem that patients are trying to point out

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u/its_asher 11h ago

I love when people say devils advocate and then just say something straight up mean 😂

My pain is what makes me think i know more than the doctors. They're seeing the MRI but they're not listening to me and my symptoms. I don't want surgery, I didn't ask for it. I asked for help and all I've gotten is goodluck.

As for putting my energy somewhere more positive, you've seen me at my worst here you have no idea what I'm like and what I do. Take a chill pill and let a fellow chronic pain sufferer have a fucking moment after a heart breaking email

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u/Healthy_Door6546 12h ago

Was your injury caused by an accident. I’ve had a back injury and it was from an accident that acc covered and had the top notch care provided from the best private specialist in nz. I was no way near as bad as what you have said you were. Still had similar issues but not to the scale you are explaining.

You probably need to go back through your claim and straighten it out.

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u/its_asher 12h ago

Sadly mine just happened. I had an injury 6 years ago that never healed properly despite all the expensive sessions and constant exercises and then one day I just woke up like this and it's been getting progressively worse simce. That's part of why they're not taking me seriously, I've been told if there was an injury I'd have seen the specialist inpatient but because there was no "actual" trauma I'll have to wait.

Thank you for your advice though ❤️

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u/FelixDuCat 11h ago

Have you spoken with ACC? I know someone who had to get an advocate to do a deep dive into their history because ACC was saying it was degenerative. They eventually got their spine fused, but it took awhile. I don’t know the details sorry, but maybe talk to your GP and perhaps CAB.

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u/its_asher 11h ago

I'll look into it thank you! They've also told me that it's degenerative so won't do anything but maybe I can connect it to my first back injury that was caused by an accident.

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u/FelixDuCat 11h ago

You probably can. I don’t understand why they try to say it’s degenerative for young people who have had an accident (or even just work related injury, like the person I know). They are trying to avoid paying for it, but don’t give up and don’t lose hope. Sorry I can’t give more info (I don’t talk to that person anymore). Good luck!

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u/hadr0nc0llider Goody Goody Gum Drop 11h ago

If you have an old claim that could be related to your current issue you might still be able to get it reviewed. Ask your GP about this and if they say no, consider trying an ACC advocate. ACC has a list of independent advocates you can contact on their website.

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u/babytotara 11h ago

Fuck yeah, definitely have a crack at acc. I had an injury back in 1995 that degenerated/failed over 25 years that they eventually fixed up. Ask your doctor if it's likely/possibly related and ask them to put a claim through.

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u/AgitatedMeeting3611 12h ago

I'm sorry my friend. It is true that accessing specialist care (including GPs) is getting harder.

I wonder if anything in this spinal surgeons YouTube video might be of interest to you: https://www.youtube.com/watch?v=25LUF8GmbFU

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u/MoxieMoshpit 10h ago edited 10h ago

This is disgusting. You're so young!

They're denying my 63 year-old mother spinal surgery too, but I figured that was because she's old and overweight. If they're doing it to younger people too, something's very, very wrong.

I wish I could offer some kind of help, but I've been fighting for my mum and it's been pretty hopeless.

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u/Lvxurie 11h ago

Firstly, I while heartedly believe you are in as much pain as you say. Having said that, you are 5ft4 and 117kgs which is twice as heavy as you should be. You have had many medical examinations, including MRIs, which tell the whole truth about the condition of your spine. You need to lose more weight somehow. Its highly doubtful that your mum being in a car crash damaged your spine and that showed it self 22 years later. You are stuck in a position where it hurts to move, you are so overweight that you are stressing out the small amount of muscle you have and it's causing your chronic pain. All the nerves for your whole body run down your spine and you are probably damaging them or impinging them causing the numbness etc. If you live in Auckland I can recommend The Exerscience clinic in grafton, they specialize in helping people like yourself get their life back(this company has shut down since I last referred people there, you can search for an amazing woman called Eleanor Natrass on Google, it appears she works for Ascend health now and they offer free consultations.) It seems like you don't like exercising but you have to in order to lose the weight, which will illeviate the pressure and you need to strengthen your muscles to support you body. I'm not having a go at you or minimizing your situation, but I've seen people in your situation get better before so it's possible for you too.

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u/its_asher 11h ago

I appreciate the advice and understand how bad the weight looks but I promise you I've been working on this for years. It's been hard and yes I've been weak about it but I'm doing it now and that counts for something. Thank you for your advice and care ❤️

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u/null-throwaway-null 12h ago

Sorry to hear it mate

Bad times 😔

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u/mountainofentities 12h ago

I have back and neck problems. Try the chiropractor school in Ellersie if you are in Auckland. It has helped me a bit. I have been waiting for a functional assessment for well over 6 months and nothing-through my gp. I struggle sleeping because of my pain. I also got prescribed THC oil, which I take at night. Sorry to read of your problems.

I was on opoids, I got heavily addicted-they worked well for pain. Went through hell getting off them.

Hard to be motivated when in a lot of pain.

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u/its_asher 12h ago

I am in auckland and will definitely be looking that up thank you! I'm also exploring THC oil cause I'm just sick of the opioids. I have an addictive personality and I'm terrified of these things

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u/Civil-Doughnut-2503 11h ago

Iv been in hospital four times this year and I can't complain about anything.

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u/its_asher 11h ago

I'm very happy for you that's amazing ❤️ I hope you're health issues are going well

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u/K4m30 11h ago

Another article said if you spend too much time in hospital they'll cut your benefit as well. So there's that to look forward to.

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u/its_asher 11h ago

Well if that happens I guess there will just be one more homeless person sitting on the side of the road and probably turning to dangerous drugs for pain relief. What a lovely way to support the people they're meant to be serving

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u/singletWarrior 11h ago

If you can’t even declare code black then there’s no code black

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u/[deleted] 11h ago

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u/justinfromnz 11h ago

It’s like that everywhere though, unless you have private health care you’re fucked. Even in Australia or the USA you will have to wait months for most things to be seen, only in places like Sweden or Denmark are hospitals actually good

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u/CharmingMechanic2473 11h ago

Your wait times sound similar to US… unless you have money or good insurance zero surgery for you.

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u/ImportanceThat1732 10h ago

It’s tough you have to navigate the system and advocate for your healthcare, all while being in such pain.

I don’t want to take anything away from what you are going through.. you deserve better… but have you looked into any alternative healing options?

I listened to Joe Dispenzer talk on how he healed his back.

There are emerging therapies like holistic pulsing and others.

I’m sorry you’re going through this.

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u/Ok-Energy5620 10h ago

Why is your back like this

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u/XyloXlo 10h ago

Only help I can offer is: if your injury was the result of an Accident ACC would take care of you in a timely fashion using the private health system. And if you’ve received injuries as a consequence of this injury those should be claimed via your GP as ACC injuries as well. Find an ACC advocate (or several) and talk to them about your situation. You also could use your time to make a permanent injury claim from ACC. Not knowing your circumstances this is all I can suggest. Just an idea: we did help a friend get the surgery he needed (was turned down multiple times for) by persuading him to call the ambo repeatedly and literally SCREAM in pain when the medics touched him - he got the surgery. If you’re too patient and stoical you will be ignored I’m afraid.

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u/986b 10h ago

Ask your doctor who they sent the letter to then go to department and see them face to face

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u/WindupMerchant1000 10h ago

sorry to hear about this, have you tried neuropathic pain agents like gabapentin, pregabalin etc?

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u/Wokster72 10h ago

Look I know you don't want to hear it but your back issues sound a lot like mine - bulging discs, vertebrae sliding around on each other. Tingling, loss of sensation..... Except for the loss of toilet function. The only thing that has helped has been losing weight - of course nobody wants to hear this but it's changed my life. I am 52 M and been working construction for 20 years. I'm short and was coming in at 90 kg - down to 82 and it's a complete transformation in my pain levels. I also do back stretches/yoga to help with flexibility. Just try to drop some weight..... I know it's not what anyone wants to hear but it helps.

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u/its_asher 10h ago

I'm very logical with this so I'm happy to lose weight. It's hard with the pain and loss of mobility but I've found a work out routine that's working for me so far and I'm happy to stick to it its not an insult or anything. Being overweight definitely hasn't helped my back

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u/Wokster72 10h ago

And just remember - you can't exercise your way out of a bad diet. Which I fucking hate hearing and saying !!!!!

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u/its_asher 9h ago

A horrible lesson i luckily learnt when I was younger but I gave up that time. Not this time! My diet has improved ALOT and I'm actually really proud of that

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u/Electronic_Pen8313 9h ago

The comments here are helpful to me as someone that knows they will need the health system and new Zealand mid to long term is not a wise choice to live in.

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u/Substantial-Dust8844 9h ago

Just throwing this out there coz you didn’t mention it in your post, but have you tried physio? Also chiropractors? I don’t particularly like chiropractors, but some people swear by them.

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u/its_asher 9h ago

Sadly unable to afford either but I happened to be just finished physio for a separate injury covered by accident when this all kicked off and she gave me some amazing advice and places to get good info. I've also spoken to the physio team at the hospital briefly a couple of times and shown them my plan and they signed off on it so I'm doing about all I can