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General health

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Original poster

oh poop peters medication requirments may have to go to PCT board for funding

23 replies

LadyVictoriaOfCake · 25/09/2007 12:18

as one of his pills is over £20 a pill. and others are v v v expensive. have magaed to get perscription this time, but GP will have to go to board about it.

OP posts:

fryalot · 25/09/2007 12:21

eh?

it's not like he has a choice in it, is it?

Original poster

LadyVictoriaOfCake · 25/09/2007 12:24

i know squonk (thanks for the card, it arrived earlier today).

if PCt wont fund it, then hospitral will provide it but then bill them anyway.

OP posts:

nailpolish · 25/09/2007 12:26

lots of people dont have a choice abotu medication squonk, but have to pay for it
asthmatics are one example

Original poster

LadyVictoriaOfCake · 25/09/2007 12:27

nailpolish, i am not talking about free perscriptions, but actually get the perscriptions in the first place filled. GP said PCT may refused to fund for this type of medication. his drugs bill is likely to come in around £3k a month. which is a lot!

OP posts:

fryalot · 25/09/2007 12:28

I know, np... what I was getting at was that they gave him the transplant knowing that he would require the medication for the rest of his life. To quibble now seems a bit bizarre.

(not that I'm saying that they shouldn't have given him the transplant... oh you know what I'm saying, I'll disappear now before I start a riot )

Original poster

LadyVictoriaOfCake · 25/09/2007 12:31

its this one drug basically the donor had cmv which can cause problems, so this is perscribed to help avoid major problems.

OP posts:

nailpolish · 25/09/2007 12:32

they always argue about who is going to fund it, misdee
it all comes out of the same pot in the end, it drives me mad how they argue over it

itll be fine tho dont worry

Original poster

LadyVictoriaOfCake · 25/09/2007 12:36

i know NP, we will get it anyway, just seems like an extra headache.

when i heard the pharmicist saying 'we cant even get that one' looking at peters perscription i thought 'that will be the valganciclovir then', turned out they are having problems getting steroid pills atm as well. lol.

OP posts:

Original poster

LadyVictoriaOfCake · 25/09/2007 12:39

i am utterly shoked at the cost of his pills though. i will never never complain about perscription costs ever again. (well maybe sometimes)

OP posts:

fryalot · 25/09/2007 12:47

glad you got the card, btw... there wasn't a huge selection of "you've had a major organ replaced" ones

Original poster

LadyVictoriaOfCake · 25/09/2007 14:46

lol, maybe we should market them as well

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noddyholder · 25/09/2007 17:22

Can't he get a pre payment?I was on TAC and I got it

noddyholder · 25/09/2007 17:23

sorry didn't read whole thread.Keep pestering He needs it!!!!How is he btw and how often does he go in now xx

Original poster

LadyVictoriaOfCake · 26/09/2007 14:34

he is doing well. still very tired mid afternoon, but ok. he is goijng in once.twice a week atm for bloods and transplant clinic. hiopefully after this week it will be once for bloods and onces a fortnight for clinic/biopsy.

OP posts:

noddyholder · 26/09/2007 22:14

That is good to hear.I think of him every day when I take my concoction It takes a while to get used to feeling normal You will soon be trying to keep up with him xx

triplets · 26/09/2007 22:17

Hi,
Just catching up, so very glad that Peter is gaining strength, love to you all, xxx

coleyboy · 26/09/2007 22:28

I hope this gets sorted out Misdee.

Will Peter have to take the CMV medication everyday forever? God knows how, but ds has managed to avoid CMV. I thought they treated CMV here with a course of IV's (a week or two's course). I will ask and report back. Oh, and I'm still awaiting an answer regarding using bio-oil on scars.

Can't believe the poor bloke has to have so many biopsies as well

Original poster

LadyVictoriaOfCake · 27/09/2007 10:34

its biopsies every week for first six weeks, then fiortnightly for a while, then monthly.

today should be the last one for two weeks.

OP posts:

Original poster

LadyVictoriaOfCake · 27/09/2007 10:36

we think it will likely to be for the rest of his life coley, no-one has given us a defiante answer on that front.

OP posts:

coleyboy · 27/09/2007 13:34

Hi LVOC, I spoke to our transplant coordinator today about CMV. And I know we're talking about a different type of ofal, but I'm guessing the theory behind treatment is the same!

CMV in children is treated via a 3 week course of IV gancyclovir. However adults are treated with the tablet form (vangancyclovir) for 3 months. The biggest reason for the difference in treatment is a lot of the kids can't take the tablets. Also adults tend to have a shorter stay post-op, so being on tablets allows them to go home.

I know this has nothing to do with your PCT problems, but I thought maybe the information may be of some interest to you.

Take care xx

Original poster

LadyVictoriaOfCake · 27/09/2007 13:37

ah thank you coley. peter was going to discuss the situation with transplant clinic today, so hopefully they will say similar to you as well.

OP posts:

onlyjoking9329 · 27/09/2007 13:43

i so hope you don't have this battle.
Steves chemo costs 15k per round our PCT have only just started to fund it, thankfully.
is is awful the cost of meds

Original poster

LadyVictoriaOfCake · 27/09/2007 17:40

why took them so long to fund the chemo?

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