Rant Please lol !

nmac234 · Post by **nmac234** » Tue Oct 12, 2010 5:24 pm

Hello ,
Just been to pre dialysis course in UHW Cardiff and asked what do you get supplied with when you start CAPD !
Ready for this "A plate Bag warmer ", nothing else apart from your normal supplies !

They want me to supply the stand or hook , weighing scales , scissors, paper towels , Bp Cuff !

Not so easy when the only income is Incapacity benefit , Nothing like rubbing it in , Your ill suffer !!!!!

Neil

JMan · Post by **JMan** » Tue Oct 12, 2010 6:07 pm

Aaah cutbacks, and totally outrageos!
I still have my scales and table from PD (now on heamo at home),

Complain, or contact the BKPA they should be able to help fund it.

Some things like hooks you may be able to use a door as a stand:)

Helen Rambaut · Post by **Helen Rambaut** » Tue Oct 12, 2010 6:56 pm

Feel free to rant - it's the one place where we all understand.

Don't know about cut backs dont be so quick to label this. I wasn't supplied with drip stand; or scales; or scissors; or BP cuff. Baxter supplied the paper roll along with the other supplies/consumables and I was supplied with a bag warmer by the unit. The unit gave me a spring balance for weighing the bag which I returned after my tx. I bought a nappy changing mat to use as a clean surface on top of a table. I appreciate the problem being on incapacity benefit so best advice is to apply for grant and ask renal social worker to help. Also if on incapacity benefit speak to renal social worker to help apply for disability allowance etc. and ask about other benefits for which you might qualify. The KPA may give small grants to help out.

Tips for hanging bag up - coat hanger over door. There's been a topic recently on this.

Helen

amanda in CA · Post by **amanda in CA** » Tue Oct 12, 2010 6:57 pm

when I started dialysis 20 years ago, we didn't get provided with a bag warmer or anything else for that matter. We ended up having to buy a bag warmer since for daily use all other methods didn't work very well. You do not have to buy a stand, you can purchase a small lockable hook which will stick very nicely to a mirror or other smooth surface and can be used in any location.

I was on the transplant list, yet didn't get provided with a pager, I had to hire my own (pre cell-phone days).

One thing that springs to mind that may be helpful is that you may be able to get a prescription for your dressings and tape. dialysis patients are entitled to free prescriptions on the basis that you have a "A permanent fistula requiring dressing". You just need to obtain an exemption certificate which can be obtained from your doctor's surgery. this will also mean that you do not have to pay for any other prescriptions too. Hope this is helpful

bigbuzzard · Post by **bigbuzzard** » Tue Oct 12, 2010 10:55 pm

My supplies from Baxter always covered everything, though never got a warmer (apart from the one built in to APD machine). Never needed one though - there was nearly always a way to warm up the bag. Still have some of the stuff, like bottles of Hibiscrub 3 years later.

Good luck with it all, Finding obscure places/ways to do the exchanges can be a good game, even if it's one you haven't chosen.

amanda in CA · Post by **amanda in CA** » Wed Oct 13, 2010 6:46 am

For someone on capd, having abeg warmer is pretty much a must if you want to make life as less onerous as possible. Bags can beheated using other methods but it all takes time.

geduramah · Post by **geduramah** » Wed Oct 13, 2010 2:52 pm

noooowai!!!!

OMG I have a spare room full of crap! I have hooks, paper towels, paper towell dispenser, dressings, gauze, strelie water, galipots, yellow bags+ties, adhesive removal for the skin, sharps bin, hibiscrub, hibi hand sanitiser, and probs other stuff I totally forgot...og yeah a bag warner thats like a laptop bag for when Im out and aboot.

Yes there is cuts but it costs too much for 1 person to supply this, thats a joke when Im getting all this up here in teh North. Tell them them are you gonna pay for the antibiotics when you get peritinitus then?

You sure deserve a rang, its totally hanus! Please dont let them get away with their responsibility - what the F do we pay NI for then?

nmac234 · Post by **nmac234** » Thu Oct 14, 2010 9:09 pm

Update ,
Have now checked with all the organizations , if i want a stand , bag warmer etc, i have to buy them , no help out there at all !
In Wales if your ill , You pay lol !!!!

Neil

amanda in CA · Post by **amanda in CA** » Thu Oct 14, 2010 9:11 pm

I thought that it was better in Wales. No prescription charge etc. LOL

geduramah · Post by **geduramah** » Thu Oct 14, 2010 9:15 pm

i would gdt in touch with dla see if they can help with costs. Since when was wales not in GB? there must be help out there, the stuff costs too much.

amanda in CA · Post by **amanda in CA** » Fri Oct 15, 2010 10:56 am

Wales is in GB. However, my in-laws live in Wales and they tell me that there are no prescription charges, since they have the Welsh Assembly who decided that in Wales there should be no prescription charges. I do agree, however, that there may be ways of clawing back the money that you need to pay.

Jill · Post by **Jill** » Fri Oct 15, 2010 10:18 pm

I've read your list and here are a few tips

1. Drip stand - don't bother. Buy some blunt ended butchers hooks and hang one over a wardrobe/cupboard door. Less than Â£5 for 2 at a kitchenware shop.
2. Scales. I bought luggage scales from Asda for weighing the fluid bags. I think they were Â£2.99. My bathroom scales were 50p from a jumble sale
3. Scissors - Â£1 from any pound shop
4. Paper towels - not expensive. I rarely need to use any
5. BP monitor. I was never told I needed one but I've got one anyway. It cost Â£2.99 from Ebay. You can buy them new from most chemists from Â£10.

If you haven't already guessed from my pennypinching tips - I'm from Yorkshire with Scottish ancestry!

Jill