UK PD people ..got a question ..

[KICKSTART]

Have you been given an IV pole as part of your dialysis equipment or did you have to buy your own ?  I inquired about this and was told it wasnt provided as part of the set up ..which is stupid to be honest . I have improvised with a large hook attached to the wall to hang my bag from ..what do you do ?  Also while i was living up in Scotland we got the line rental on our landlines paid for , but its seems they dont do that now i have moved (NW) .Anything else i have missed ? I know all about benefits , its just odd little things you find out over time than might help .

[Ken Shelmerdine]

Kickstart
 For the short time I was doing CAPD I used a microphone stand, you know the type they use on stage. 3 support legs, main stem and boom arm which is the bit of the stand which is adjustable and extends outwards at whtever angle you adjust it to. Where the microphone usualy attaches I hug an S hook to hold the fluid bag. It's a cheaper alternative to an IV pole, (have you seen the price of those things, the cheapest I could find would have cost me about 80 quid) the only problem is that a mic stand doesn't have any little wheels for transport. I would guess that one could be modified in some way if you know somebody who could do it for you. You could probably pick up a mic stand on ebay for about a fiver.

[KICKSTART]

Thanks Ken what a good idea , im sure i could adapt it somehow , it doesnt really need to be on wheels as i sit watching tv during my exchanges  . I agree when searching for an IV pole about the prices. I dont understand why its not made part of our equipment , i mean what you supposed to do ? stand with your arm in the air holding the bag up? They dont give you a machine then ask you to provide your own tubing ..or do they !!!!!!!! better not speak to soon ! 

Ken i take it you also dont get assistance with your phone line rental ? or anything else ?

[Ken Shelmerdine]

Kickstart I've never inquired about that maybe I should. I am on a list whereby if there is a power failure I get special priority call out.

There are a few benefits that I should claim for but (and I know this sounds stupid) I don't think I am sick enough to deserve them. I could claim attendance allowance for Rita by saying for example I can't change my site dressing myself and need help setting up the cycler etc. but the point is I can and I do and I don't like lying. Rita's always on at me to get a disabled badge for the car but I'd have to put on the agony at the assessment because I can walk for miles.

As I've metioned before I'm not at all disabled by this disease as yet and I am reluctant to pretend that I am. Maybe I'm just being daft and I should 'work the sytem' as they say.

     

[paris]

You are an honorable man, Ken.   Proud to know you!

[rose1999]

Ken - I second what Paris has said.

Kickstart - just a thought but is there a branch of the Red Cross near you, most large towns have one (try the phone book or internet search) they lend out all sorts of medical equipment and there's no charge.

[KICKSTART]

Rose , thanks for that ! Im not in any urgent need having improvised !
Ken , i too have been told to apply for a 'blue badge' but havent done yet ..wow you are lucky being able to walk miles with no ill effect , im totally breathless all the time and just walking to my car wears me out !! (i cant park directly in front of my house)
I have informed my electric company that i do home dialysis too and was given to understand that in the event of a long term power cut they would supply a generator !! (that would be fun!)

[Ken Shelmerdine]

Yes I've thought about that. A noisy PD cycler and maybe an even noisier generater? Oh yeah sure I'll sleep like a baby through that lot! lol