Fundraising... Should I or Shouldn't I

[Danielle_NZ]

Looks like my husband has been put in the to hard basket at the local hospital and they are going to send him to rehab to see if he can either get better by being forced to use his legs or cope / live with his symptoms. Unless there is a negative response I'm guessing nothing else will happen. No more investigations will be done on why he's had a headache for 7 weeks and is now unable to walk without two people assisting him.

2nd opinion to use means going private. We don't have health insurance (lapsed and was cancelled a month before this started) so do you think fundraising is an option? Or is that just plain rude because we should have had insurance - although this could be classed as a pre existing condition depending on what the final outcome is (he had a cyst in his brain in 1999 but they can't see any changes).

I think it's rude but want to hear other people's opinions.

[LionsandBears]

If you can't afford care for him and the public system is giving up on him, then by all means raise funds. You can't anticipate everything in life and it's Murphy's Law that something will go to hell when the insurance lapses.

Has he had an MRI or CAT scan?

[Danielle_NZ]

He's had both, and a ICP monitor. Surgeons think possibly localized pressure in his cyst but they wouldn't know without inserting an external shunt and they feel the risks are too high for a maybe answer (cyst is by central nervous system). Neurologists have given up because they can't put all his symptoms together to come up with what's causing all the issues.

[Miss_Dee]

I don't see any issue with fundraising. If people have a problem with it, they won't give their money. Nothing wrong with asking for it.

I really hope someone can find an answer. My mum was unwell and it took them over a year to work out (after god knows how many scans, tests and investigations) that she had paraneoplastic syndrome as a result of breast cancer. Don't be afraid to ask for more investigation and for the head of the unit to look at his case. And don't be afraid to ask for what assistance you can be given until they find out what's wrong and he gets better (assuming you haven't already). There is plenty of funding out there to assist people if you know where to look. My mum has a carer come 3 times a day, 2 hours each time to get her showered and dressed, make her breakfast and lunch, do some general tidying and washing, plus a cleaner comes once a week, they're getting funding for an electric chair for her, plus other stuff. My parents own their own home, my Dad earns a good income, and Mum gets income protection, they have private health, etc so you don't have to be destitute to access this funding. What I've suggested may be way over and above anything you need, but thought I should mention it in case.

[Danielle_NZ]

Thankfully we have an au pair to help with kids for my work hours so I've been able to spend a day or two up at the hospital when requiresd, Josh is still in hospital and will be for at least 2-3 weeks after they have a spare bed in rehab. But thank you for that info, he's got income protection thank goodness but that only covers day to day living and at the moment with me doing reduced hours we are feeling the pinch. Level of income was a concern but also because we are from NZ we are limited by that also when it comes to assistance I believe. I'm yet to look into all that. My head's swimming at the moment.

[AnyDream]

Another option is to seek another opinion at a major public hospital elsewhere in your state. I see you are in Queanbeyan, so am assuming all the investigation has occurred at the TCH? If this is the case, there may be avenues for him to go up to Sydney where there will be some "big guns" in neurology, and possibly some whizz-bang machines that can scan with greater accuracy than the ones in ACT.

Alternatively, in many of the medical specialties in the ACT, the same doctors work in both public and private systems. You may be able to get another opinion with someone in the private system (ok, so there would be consultation fees for that, but only a couple of hundred) but then if it turns out treatment is needed, then that doctor may be able to treat him in the public hospital. Ok, so that's not straight forward and there could be a bit of waiting, but it is another possibility. Your DHs GP should be able to help with

FWIW it might be worth taking out health insurance NOW. Enquire whether you can have some or all of the waiting period waived because you were a member for XXX long before you lapsed. Whatever is happening could be something that turns into a chronic health condition, so getting the insurance now might be a huge help in 3 or 6 or 12 months time.

[HotI]

Don't give up looking for answers, or demanding that your health care providers keep looking. And if the HCP s give up, find someone else who will help you. It took me over 10 years to get answers and was worth it in the end, but an earlier diagnosis could have reduced many difficulties and long term problems.

good luck.

[Danielle_NZ]

I'm looking into the health insurance, trying to find the paperwork of our policy. Appears to be with all the other paperwork I can't find since he went in.

But I'm not going to give up. Someone doesn't just stop being able to walk for no reason.

[Lenny]

Level of income was a concern but also because we are from NZ we are limited by that also when it comes to assistance I believe.

You are australian residents living and working in Australia. You have a special category visa (by default).

What do you think you will acheive by going private? I would generally think that in this situation the public system is the best place to deal with diagnosing what is wrong.

If you do go private i'm pretty sure you could work out some kind of payment arrangement with the hospital. Fundraising seems to be something reserved for people needed to travel long distances or overseas for treatments that aren't available to them here - or ultra expensive drugs that aren't on the PBS.

[Traveller]

I would second staying public if you can. My son is having problems with his arm at the moment and after almost 3 months of no answers I asked about going private and his surgeon basically said he was conferring with 3 specialists from that hospital and the children's hospital, so if I stayed public it would be easier for him to manage the case. However I have had to go armed to appointments with long lists of questions, and have kicked up a bit of a fuss about wanting continuity of care so I have a reg now that is my point of contact. Generally the easiest access to specialists is at public hospitals, at least in Vic.

ETA in response to your original question, there's nothing wrong with fundraising if that's what you decide to do.

[Danielle_NZ]

What do you think you will acheive by going private? I would generally think that in this situation the public system is the best place to deal with diagnosing what is wrong.

We are hoping for an un bias opinion, and someone who actually wants to look into his symptoms and past the cyst for the problem. He has been passed backwards and forwards between teams and they believe because of this he has had his second opinions, even though the resident and registar were the same on both teams. Because of his past a lot of neurosurgeons will not operate on him (he had this problem in New Zealand) and if we decide that the risks outweigh the benefits for the surgery we will need to find someone who will take that risk with us... really there is so much information going on in my head I don't know what's here or there... there are so many what if's at the moment.

For example of one of our issues, Josh has had low sodium since day after his last operation, we are now 10 days past op and his numbers are slowly getting lower yet they haven't changed the course of treatment (1.2 litres of fluids a day max and no water) and they haven't even tried to find out which kind of low sodium issue he has. They have said it "COULD" be a side effect from his surgery and are going to treat it as such. I asked them how long they were going to do this and they basically said they won't change anything and when he changes to Rehab they will probably just remove the fluid restriction (which from my understanding will make it worse).

We've now been told that it will be at least a week before he gets moved to rehab and then will be there for about 4 weeks, and all this is because the doctors don't know what is wrong so want to try this option of treatment

[Mother Goose]

I also support the staying in the public system. But push for further reviews. Don't give up on it - even once he hits rehab.

As a side note, MOST Private Consultants also work in the Public Hospitals as well. Even if it's only a few days a week or month.

In terms of fundraising, wait and see how he goes in rehab. Depending on how he progresses and adjusts there, he may need some stuff at home or modifications - you could approach groups like Rotary to see if they can assist you. I know my work donates a lot of our old equipment to Rotary as do a lot of other major hospitals in Vic.

This must be very worrying for you - I hope he makes some improvements soon and you can get some answers.