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15 years 7 months ago #208409 by The Kats Place
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So the cancer society won't help at all?

kats
Live your life in such a way that it will be easy for people to say nice things at your funeral [;)]

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15 years 7 months ago #208435 by Hestia
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They did more or less tell that winz rules are winz rules and that the national travel allowance is never given to see specialist if they are not publicly funded even if you drive a couple of hundred km a week.

I think there is some kind of help that you can apply to and only if specific circumstances.
We are to get to meet a nurse to help us with how sick he becomes when he eats. He gets massive nasty insuline kicks after the surgery that we have had no help with how to solve.Maybe their nurse can give us some more answers.

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15 years 7 months ago #208438 by The Kats Place
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I'll be seeing my friend tomorrow - I'll see if she can tell me more about the assistance she received (very recently) from the cancer society.

kats
Live your life in such a way that it will be easy for people to say nice things at your funeral [;)]

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15 years 7 months ago #208443 by Pumpkingirl
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Have you tried the district nurses and hospice Suzanne? They are really wonderful help, no matter what your income.

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15 years 7 months ago #208446 by betenoir
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Might be worth flicking an e-mail to 'fair go'.

[SIGPIC][/SIGPIC] BAAAAAAAAA

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15 years 7 months ago #208491 by Hestia
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fairgo could be something for all those that do not get travel allowance just because they did happen to pay a surgery insurence for many years.
that is not fair!

district nurses and hospice.
they might be wonderfull people,but,you only get a district nurse when the doctor has said so and when doc says that all treatment at hopsital then you can't get them.
hopsice is also something, but then again, that is for people at the very end of life when they can't stay at home.

what I think is absolute not ok is that if I parachute and damage myself I do get acc and rehab.
if I get sick and we talk longterm or terminally then you have your 10 sickdays and after that it is more or less bye-bye.

there are so many families in nz that are in this situation and many times their home is going towards a mortgage sale and they can not pay electricity and basic things.

couple/families that are healthy and lose one income can happily manage on a income just above 28k without any support.
but if you have 28k and then have to pay medication and travel and extra costs because of sickness then the 28 do fade away pretty quickly.
I do not think that families with long term terminally ill providers should have to search for funds and kind of beg.
they should be entitled to the help, same help as if you have had an accident and get acc.

I am looking forward to see their nurse and hopefully she can tell us how to coop or reduce some of his symptoms to make it a bit more easy for him.

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15 years 7 months ago #208494 by terralee
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Suzanne .. this may sound drastic but ... could you leave your job ... go on a benefit ... look after your husband (and yourself better) and receive all this blasted help and money that is not avaliable to you as things stand:( .. at least you may be able to recoup some of your strength and get to spend some quality time with yourself and with your husband:)
Just a thought ..........am thinking of you and you are both in our prayers.
God Bless

Leonie & Zoo!!! :silly: :woohoo:

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15 years 7 months ago #208537 by Pumpkingirl
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Suzanne;182415 wrote: hopsice is also something, but then again, that is for people at the very end of life when they can't stay at home.


That's what we thought too Suzanne, but that's not correct. Hospice actually have a wonderful support network of Drs, nurses, caregivers and volunteers, and they can help you at any stage, and they go out into the community every day. It's an amazing place and I know you will find help there.

If you give them a ring - you are NOT bothering them - they are people born to help. It might not be financial help, but I think you'll find support that you need. Not just your hubby, but support you need. You don't need to be facing this alone.

Regarding the district nurse, my cousin got all her treatment at hospital, but we still had the district nurse visit. I think I would try ringing the district nurses' office itself and asking. One thing we all found was the Drs could be pretty hopeless/useless at knowing what we were/weren't entitled too.

On one occasion, it was the chemist who advised us of our rights - as my cousin was paying full price for all her medicine. Turns out, all cancer paitients should get a special number from the hospital that needs to be put on all their prescriptions, that entitles them to basically free medication (a few dollars at most), but she wasn't given one for six months, and we didn't know to ask for one. This was not income tested - my cousin and her partner were both on a significant salaries (over $80,000 a year), but were still entitled to quite a lot.

But we had to ask and ask and ask for help. It was very frustrating, we didn't understand why one person couldn't tell us this stuff. But between them, the Cancer Society, Hospice and the District Health Nurse were brilliant.

I don't mean to go on about it, but please keep asking these groups for help. There are things you are entitled to, and these are the people to help you get it. Not the Drs at the hospital - they are Drs treating cancer only, and there is heaps they don't know about.

In one case, they didn't even know the correct name for the drugs my cousin was meant to be on. Again, it was our chemist who rang up the hospital, shouted at them (and I mean he really shouted) and finally got her the right drugs.

Our overall impression was it was a very big, very busy system of people, all over-worked and scurrying around, who often didn't have time to think about individuals. I don't blame the Drs and nurses who let us down, they were busy trying to help too many people, but I promise there are people there to help, when you find them.

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15 years 7 months ago #208550 by Simkin
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Hi Suzanne,

I think I would do what terralee suggests - you're working full time, are stuck in one place all day when those people, who might be able/willing to help are available. You need time to find the help you need - it won't knock on your door.

Once you're on a benefit it's a completely different ball game.

Regarding the thing with private health insurance and then not being entitled to financial help. I didn't know that was the case now.

I have a friend who had a bit of blood in her stool. She went to her doctor who said that it takes so-and-so many months to get a publicly funded colonoscopy but he recommended to her that she got one done privately and if there is something nasty she'll get into the public system no problem. She jumped the queue - there was cancer, got a publicly funded operation within a week and all the after care - all publicly funded. The same was the case with mammograms. If you had the few hundered Dollars to pay for it yourself you could get ahaed of all those who didn't and I think they've stopped that from happening now.

Regarding hospices: That might differ between areas, hospices, etc. From what I've heard they only want to know once the person is terminally ill. A friend of mine had her mother gravely ill (that was earlier this year) and she couldn't get help from a hospice. She wanted her mother to go there because at the hospice they have the most experience in pain relief. But that is only availble for terminally ill patients because then it doesn't matter if they get dependent on these pain killers. My friend and her mother both had a VERY hard time - the mother was screaming with pain as soon as anyone touched her, the doctors in hospital didn't know what was wrong with her, the only pain relief they gave her was panadol. She has passed away since, aged 83.

Suzanne, I think your highest priority now is helping your hubby to regain some strength and it may well be necessary to quit your job to be able to do this. You could also ask your employer whether you could have 3 months off to help your hubby. Help is there - somewhere, but you'll have to find it and without a large circle of family and friends you'll have to do it.

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15 years 7 months ago #208551 by Llew
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Regarding hospices: That might differ between areas, hospices, etc. From what I've heard they only want to know once the person is terminally ill.


Not necesarily, hospices are also considered the "pain management" experts these days, whether the patient is terminal or not, they will help with getting the pain treatment right.

[SIGPIC][/SIGPIC]

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15 years 7 months ago #208554 by reggit
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The hospice here says that they have a field worker out that way, and that all they need for you to register with them for assistance is a district health nurse referral. To get the district health nurse in the first place, you need your GP to sign you up for this - you can get this referral even if you are under hospital treatment.

Suzanne, I know that you are a self-sufficient person who doesn't like to ask for help, but in this case, your visit to the GP may require you to be extremely specific as to what you want (district health nurse referral); don't try to be controlled and calm, get upset if any obstacles are put in your way. Unfortunately, if you are controlled and calm, they are going to assume you are coping alright without help. Show them that you are not.

Take a break...while I take care of your home, your block, your pets, your stock! [;)] PM me...

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15 years 7 months ago #208555 by Pumpkingirl
Replied by Pumpkingirl on topic a BIG Thankyou!
I have to disagree about the role of hospice. Perhaps that was a one-off case and very bad luck, but having had quite a lot of contact with them over the past couple of years, that would be a very rare case.

There is no reason for anyone to be in that much pain. I would seriously question her GP, her hospital Dr and hospice if that was allowed to happen. Having spent hundreds of hours sitting in hospice, Auckland Hospital and the cancer clinic, I never saw anyone screaming in pain like that, let alone someone who was left to suffer.

If you have family who can help care for a patient, then hospice do encourage you to do the caring at home - their beds are usually full of people who have no-one to help them at all, not even family. Also, most people would prefer to be at home with their loved ones, than stuck in some place with strangers, but feel scared they will die - this is totally understandable and it is very frightening, but having gone through it, I believe they are right.

Here is just some of what anyone - no matter what their income - is entitled to.

1. Pain medication - sometimes you must insist, and it's hard because we all think Drs know best, but this isn't always true. If you insist, you will get pain medication. If you have a family member who can be your advocate, all the better. Any pain is unacceptable, and if a nurse or Dr won't help, then keep insisting until someone does. This worked every time for my cousin. Some of these drugs caused nausea - there are drugs for that too, insist on them.
2. Talk to your GP - don't assume they know what is going on, files and updates can take ages to get from hospital to your GP. It is your GP who will get you the all-important referral to the District Health Nurse. You must TELL THEM you need this referral. Some Drs rarely deal with people who have cancer and often don't know what to do - so tell them precisely what you need.
3. Get a patient number from the District Health Nurse - I can't remember its official name but this number will mean you get help from hospice nurses (for free) who come out into the community, and also discounts on medications (not all, but 99%).
4. Don't take no for an answer - I know it's the last thing you feel like doing when you are sick or caring for a sick person. But please know, that while our health system has many faults, it also has great benefits and you are entitled to help, no matter what your income. It may not be money, but it will be things you need.
5. Hospice isn't just for near-death cases. There are district and hospice nurses who go out into the community every day to help cancer patients at all stages, from getting special beds, to toilet chairs, to bathing chairs, to arranging pick-ups, people who can help you bathe someone who is bed-ridden. Most importantly, they give patients and caregivers the moral support they need.

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15 years 7 months ago #208597 by Simkin
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I'm sorry - I didn't want to scare or offend anyone - my friend's mother didn't have cancer - she had dementia and something in her stomach area. And she was not considered to be terminally ill.

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15 years 7 months ago #208601 by Pumpkingirl
Replied by Pumpkingirl on topic a BIG Thankyou!

Simkin;182526 wrote: I'm sorry - I didn't want to scare or offend anyone - my friend's mother didn't have cancer - she had dementia and something in her stomach area. And she was not considered to be terminally ill.


No offence taken at all, nor was any intended in return. It's just when you're going through this stuff, there are important places to turn to for help, and hospice is definitely a good place to find helpful people.

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15 years 7 months ago #208660 by Midge
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Hi Suzanne,
So sorry to read that you're not getting the help you and hubby so desperately need.

Like Terralee, I feel you'd be getting more help if you were on a benefit but..... folks, if Suzanne handed her notice in, wouldn't she have to wait ages to actually get a benefit? There is a stand down period of 10 weeks, isn't there? Also, would Winz have her chasing up new employment from the day she approached them? I'd like to suggest getting the sack from work but it would bring about the same situation, wouldn't it?

Our public health system stinks but I've known it to be worse under other governments. Surely there must be some outfit that can help Suz and her hubby.

[SIGPIC][/SIGPIC]Cheers[:)]
www.jerseycows.co.nz

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