Rocking the Establishment Boat (Long Rant Warning)

[Henry P Snicklesnorter]

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[cariad]

Henry, I know nothing about the Australian system (except what I read here from your compatriots) but that does sound like a tremendous waste to be forced to see someone in person when all they really need are lab values and a few questions answered. I think it's wonderful that you want to keep working as it's so important to have something other than chronic illness to focus on each day. Here in the US, they urge people to return to work as soon as possible ('ticket to work' anyone?) because they want as many as possible off the dole. I have to wonder if you're not seeing a touch of age discrimination in their attitude, since they imagine you're so close to retirement age anyhow? Perhaps they are worried about the physical aspects of your job, but if that is the case, they should just tell you so.

I'm sorry you're dealing with this frustration. I am 90 miles from my hospital, and get labs drawn locally and sent to them. I phone if anything seems to be going wrong, and my doctor (in my case, a surgeon) is more than happy to consult with me by phone, email, whatever. If he says drop everything and get down here, I will do that, but it has only happened twice. My situation is very different from yours, though, in that I am post-transplant.

Good luck. Keep suggesting ways to streamline the process - someone may eventually listen!

[KICKSTART]

Firstly welcome ..secondly ..oh you could so be in the UK with everything you say ! I am notorious for rocking the boat ..as you will learn and as a result of that , i wouldnt go as far as to say victimized  but certainly not liked at my unit. I did pd for 6yrs , without event or conflict , but now im on hemo , at a unit and hate it , mostly due to certain members of staffs attitudes. But i to have had this argument time and time again , that one size certainly does not fit all !

[Henry P Snicklesnorter]

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[RichardMEL]

Henry this is interesting to read. I'm a bit younger than you - which may or may not have something to do with it - but I actually find the opposite experience in my part of Oz. Here they do anything and everything they can to keep people working - and certainly there is ever a push for more home hemo, PD etc to allow people greater flexibility with their lives (which includes work). My unit is also good in terms of allowing changes(where possible) to the routine if something had to be fitted in for work, or more normally for pleasure(like if there's a footy game on I want to go to to endure the misery of another Tigers loss in person!  ).

My Neph only wants me to see him every 3 months and it's pretty standard - i am sure I could go longer between visits - like you it's usually a "everything stable? ok we'll keep it the same" deal. I have never done PD so I can't comment on why the PD folks want to see you every month -that could be standard I'm not sure and don't want to comment on that kind of thing.

it does seem to me somewhat inflexible that they don't want to at least try and accomidate your needs, specially when you're working in the resources sector, and what with the "super tax" and all coming in you'd think the govt would bend over backwards to assist, but I guess that's irrelevant to the health dept. They probably work to a principle of seeing all their patients on a regular basis to monitor them.

Maybe a talk with your nephrologist might help? s/he could possibly organise something more appropriate for you? I had that happen with mine when the dialysis unit manager wanted to move me out to a satellite unit, yet I live right accross the road from the hospital. I went to the neph and said that it was ridiculous that they wanted to move me 5km's away when I live 2 minutes walk from the unit door. I've been at that unit nearly 4 years now and am part of the furniture once common sense prevailed.

I certainly can relate to what you're saying and think it's crazy that there's an assumption about folks going onto disability and social support... but I don't think that's universal - certainly in my experience there is a lot of support for those of us working (I work full time). I do know a lot of D patients find it hard to work and a lot do go on disability support - but I'm like you - I *want* to work - not just to earn $$$, pay bills, and live etc - but to have something positive to do in life rather than sit around and think about all the problems I have to deal with.

[Stoday]

I know what you mean HPS. I'm 69 and I choose to continue working, although it's only for one day a week.

I can have home hemo if I want although that's a problem because my wife, who would have to be my helper, wants to continue working even though she's 5 years past her retirement age.

Unlike poor old Kickstart's, my renal team is 100% helpful. Incidentally, I'm in the UK.

[Henry P Snicklesnorter]

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[Rerun]

I love you name!

           

[Stoday]

A recent policy paper in the UK's NHS said there should always be some spare capacity to accommodate patients on holiday.

[KICKSTART]

A recent policy paper in the UK's NHS said there should always be some spare capacity to accommodate patients on holiday.

Yeah right ! ..have you come across this ? cause i certainly havent ! I wonder if the people that write these have ever been near a unit ?

Oi and less of the OLD KS    see ra ra ra ! 2;4;6;8; who do i want to aggravate , all the renal nurses that i hate !   

[RichardMEL]

Henry - certainly sounds like you're coming up against a bit of the bloody minded mentality some have... like, you're local, you should be able to come in, so you have to come in - because everyone else does. Sounds frustrating. I think that they should try and be somewhat more accomidating to patients needs given the chronic and serious nature of the disease we have. Look, if they felt that 3 months was too long and could impact on your health in some way, then OK that would be a reasonable reason to me to request monthly visits.. but I don't see why you can't do it on the phone?!?! I mean do they have to inspect your catheter/access every time? Surely if you have a problem you'll know about it and get your ass there to be checked out. I just hate it when folks can be inflexible like that.

Just on your point about the "folks have been there for years and have their times and spots sewn up" - well yes, but I've also found in our unit that because the "long timers" are often older and retired, they are more flexible, and some at least are OK to come in and do an early shift or late if they're requested to. Most times I've requested a swap they've managed to do it one way or another, but I try not to ask too much unless it's important.

As for holiday spots - yeah good idea, but the fact is i think the rate of folks entering ESRD and needing dialysis are more than the capacity, and even though they seem to always be opening new satellite units around the place, the demand seems to outstrip the supply(which is sad) so it's often hard to have spare chairs for holiday patients. We only have 12 spots in our unit, what with hospital in patients, emergencies etc, sometimes we have a few free, an other days it's totally full....

[Henry P Snicklesnorter]

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[RichardMEL]

Your soapbox is fine Henry.

By the way just to clarify what I meant - when I was talking about "regulars" being willing to swap shifts, I meant as a one off.. not for a permanent spot. I, too, would be loath to even ask for another slot. Some times the staff have asked me if I wanted to change to morning(I do afternoon) but I like to sleep in and 0700 start is just not for me (or my cat ) so I am happy to stay where I am. I absolutely agree that it's not right to put someone out so you can get a better spot, specially if they have been there longer. I think though if I said to the boss that I wanted to move to a different shift, they'd keep it in mind, and when a vacancy came up they'd move me there which I think is totally appropriate.

I am envious of the freedom PD gives you mate!!!! 

[KICKSTART]

Yes i loved pd ..sorry to be the bringer of doom ..but it doesnt last forever ..sigh !

[Henry P Snicklesnorter]

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