Happy I'm here...and not there.

[Rob Brydon]

Hi folks, You will probably know I've only been on here a few days but in that time I've read so much that make me appreciate where I am.
One of our machine technicians recently went to the USA to have a look at Nxstage users see what the patients thought of it. Maybe thats where New Zealand is heading as we too have a burgeoning diabetes health problem. He had been told that Australia and New Zealand was miles ahead of the states and many other contries with their Dialysis but doubted it could be that bad. He was very surprised at what he saw and found out on his visit. Long story abbreviated:
We get to choose what dialysis we want to do and we get trained to do that. Mostly in NZ you get trained to look after yourself at home. Centre dialysis is not an option unless there is no other way. Meaning, if you don't like needles, get over it. 20 years ago here in Christchurch, nocturnal, meaning overnight 7 hour minimum was the way. Now some patients are choosing to do 4hours 5-6 times a week but no one does under 20 hours and it's always at home.
The tech said it was all about making money in the US whereas here in NZ it's all about saving money and getting people looking after themselves at home with a machine is infinitely cheaper and far better for their general wellbeing than centre dialysis.
I thank god I have the ability to choose. I start my set up at 9.30pm Mon, Wed, Fri but thats flexible. Set up is done by 10.05 and after I've got the cat in and made myself a cup pa and crackers and cheese I head for bed to have it and peruse the fistula. On by 11 and then I take my triazolam tab. I watch tele for an hour or 2 and then get to sleep. Admittedly some night I don't sleep well and I can generally only sleep on my right side with needles in left arm with m machine to my left. I'm deaf so hospital has given me a alarm system that goes under my pillow and vibrates me awake when the machine sounds. Like all my dialysis suplies and machines over the years there has been no financial cost and I have never had medical insurance. There is a small charge for medication each year which includes EPO.
We have alot of people bellyaching about the health system in this country but having been in it so long and reading about here i almost feel indulgent. Almost ;-)
I'm sure there are differences far beyond the obvious which to me seems. In your country it seems like it's all about making money. Down here it's all about saving money.
To quote Professor Kelvin Lynn, my retired specialist. "Over a thousane patients are on two forms of home dialysis in New Zealand the moment. And they are saving the health service around $30 million dollars a year.I've done over 40,000 hours on dialysis and I have only just realized how lucky I am.
If there is any way you can do longer hours at home...do it. Your life will change..Thanks for listening you guys...cheers.Rob

[tyefly]

 It is interesting the differences that you describe....  there are certainly difference just within our boarders...  We do have choices and anyone can do dialysis at home given that they can do it properly....   I would certainly expect that even NZ if you cant do dialysis your self I am sure that there are places where one could get help...  Where do some of those poeple go to get their dialysis....

You certainly have some well said phrases...  And I respect that you have had so many years being successful with dialysis.....  Look forward to more information

[RichardMEL]

Absolutely right!! The oz system is very similar and even though I can't do home hemo for a number of reasons (I would if I could - trust me!) the in centre care is sensational and for us very little up front cost (and I am happy to pay my taxes given it's way less than what the govt pays to keep me ALIVE!). We have it pretty darn good down this side of the world that's for sure.

[Rob Brydon]

The emphasis is on getting all patients home whether they be on HD or PD. In Christchurch we have an Acute Unit which is in the hospital which is mainly for inpatient cases. Across the road we have a Home Dialysis Training Unit which is specifically designed to do just that. Get the patient home. I do have a friend soon to go on hemo who is completely blind and she will have a nurse come and put her needles in and get her on the machine. I have no idea if she will stay or a family member will sit with her but this is a rare occurance. If ever things go wrong or I have an op and have to wash in there it can be between Acute and HDTC.
There have been many changes I've seen over the years and most are to do wiht making patients well and making it easier. Privately owned centres don't usually have that as a priority so it seems. Thanks..Rob

[Bill Peckham]

I dialyzed in Auckland in 1999 at a unit that had everyone's name on a big board. Each patient was reckoned by their level of staffing. There were patients that need 3 to 1 staffing, they could share the nurse with two others all the way up to patients who were reckoned needed 6 to 1 staffing. The board was a way to organize things and keep track who was there and how much care they needed.

The 6 to 1 patients set up their machine, drew syringes, cannulated and then cleaned up when they were done. The staff for them was there to do charting and case management. The 3 to 1 patients were looked after soup to nuts by staff. The people in between were those that needed help with more or less.

I thought this was very clever. I could see people starting at 3 to 1 and as they learn the ropes moving up to 6 to 1 and then with all these new abilities they would be well positioned to look after themselves at home. I would say the US system is much more paternalistic. There is a dynamic in dialysis - in any chronic disease - called learned dependence. You're not feeling well, staff are empathetic professionals with the training to take care of you and as the one who needs dialysis it is very easy to let that happen. It's easy to let people take care of you but in the process you can loose your adult independence.

Down under you've done a great job pushing back on that dynamic. It really is for the best if you learn to take care of yourself. It's harder for the provider. It takes more time but it is so much better. From what I've seen it is a commitment evident in design and execution down under. It's a system approach, which is really what we lack in the US.

[RichardMEL]

hey bill that seems like a cool system too. My unit isn't run like that, but it's hospital attached which may have something to do with it (they often get acute patients, inpatients, newbies, etc). My unit definitely pushes home training. The staff are always telling me I'm a prime candidate for home training, and I agree, except I can't do it on my own with my eyesight problems - otherwise I would have bee there ages ago. I can pretty much work the machine and sort out minor alarms (though some of the bosses get a bit upset and don't like me "pushing my own buttons" lol). Mostly though they let me do my thing since I rarely change things (like pump speed) based on how I'm feeling, and I always let them know when they come by to do observations.

For me as I've said many times before it's all about having some control over MY treatment of MY body. Who cares more about ME than ME? So I like to understand as much as I can and participate in MY treatment. It's not a power thing per se.. just me doing as much as I can to support myself and give me the best treatment possible (important as sometimes staff are busy or whatever and I don't have to sit there waiting for someone to become available).

I do like the idea of that 3 to 1 to 6 to 1 scale. Certainly in our unit we have some folks who set up and needle themselves and clean up right to the patients who need total hand holding. I only let the good looking nurses hold my hand! 

[Hanify]

And the biggest difference down here is that we aren't reliant on a partner at all.  You can do home haemo (carefully) on your own.  So, unless there is a reason like sight, and a district nurse can't be organised, the unlitmate goal is to get people home.  As Rob says, this is because it will save the system money that can be spent somewhere else.  There are cases though of people who the unit just doesn't feel will cope with hime dialysis for a variety of reasons, and they continue to go in centre.  But that can sometimes be up to two hours away - not often more than that - NZ is too small. llol.

[del]

Canada is a lot like Australia and New Zealand.  Home dialysis is really taking off in the province I live in.  Dialysis treatments are not a big money making business here either.  My husband has been on nocturnal 5 nights a wek for 7 hours a night for 3 1/2 years now.