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Andie View Drop Down
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    Posted: 09 April 2008 at 9:33am

OK so anyone else want to do this?  I've been pondering the amount of time that some of us have waited for our Special Authority numbers - and lets face it, my child and others I know of would have waited in agony having constant reactions to breastmilk for weeks if it weren't for the kindness of friends with Neocate prescriptions for their own children.  This is just not on!!  Supplying formula directly contradicts the MOH's 'breast is best' policy, so maybe this is part of the reason the cogs take so long to turn on the issue? 

Anyway, I'm thinking of my next child, for whom I'll need Neocate if they react the same way Ella did to BM.  And I'm thinking of baby Greer and Aimee who've been put in a horrible and stressful situation all for lack of a bit of paperwork, and IgglePiggle who I imagine will need to call in a few favours should she not do so well with the BM, KA's wait for her SA#, and all the other babies on here who I don't know personally but I see there's a lot of people from this site picking up their Neocate scripts (or trying to anyway).  The funding for it here is good - it ends up costing the same as regular formula bottle-for-bottle, WINZ will come to the party even, lots of good stuff has been done for us, but it's high time that a system to get Neocate to babies urgently was worked out.  I'm going to contact Allergy NZ and find out if anyone is already lobbying the Ministry for this, and if they are, will lend my support.  If they're not, I'm keen to bite the bullet.  Does anyone else want to add their support (and their stories) to this?  I don't know yet exactly what kind of support it'll take - not financial, if that's what your're thinking.  But I'll find out - I'm a bit rusty on social policy processes now but hey, if I start I'm sure to find out! 

Andie
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aimeejoy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote aimeejoy Quote  Post ReplyReply Direct Link To This Post Posted: 09 April 2008 at 11:32am
Sure will Go for it girl!
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cuppatea View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cuppatea Quote  Post ReplyReply Direct Link To This Post Posted: 09 April 2008 at 1:27pm
I would be keen to get on board. I have been thinking of writing to my mp about it but wasn't sure if that was the best route.
All they really need is for gps to be able to write a one off script for a months worth until you can see a paed, that's what I think anyway.

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ElfsMum View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ElfsMum Quote  Post ReplyReply Direct Link To This Post Posted: 09 April 2008 at 1:50pm
puts hand up..in my case I'm not sure if it was because paed was in Africa but it still takes 7-10 days after seeign him anyway! )

..we had to wait three weeks if it wasnt for cuppatea as well(though since i have found you can ring neocate and they give you two free tins and the rest on loan)

anyway I'm with you on this!
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Kellz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellz Quote  Post ReplyReply Direct Link To This Post Posted: 09 April 2008 at 1:51pm
Yep me too. Although our special authority was for Pepti Jr cos our Paed wouldnt prescibe the Neocate withouttrying Pepti first. Still had loads of probs and stressful times, and had to 'borrow' loads of formula before ours came through too.

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cuppatea View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cuppatea Quote  Post ReplyReply Direct Link To This Post Posted: 09 April 2008 at 3:08pm
Yeah my script actually took more than 2 weeks to come through, I phoned several times as had been told it would be just a week. In that time we kept him on his normal formula as advised by the paed but had to dose him up with lactulose so he could poo and smother him in cream for his ezcema not to mention the fact that the formula was giving him reflux which unfortunately I didn't realise at the time. I wasn't told about the free tins or the loan system and we didn't know anyone to borrow off. It was a horrible horrible time. I was also unaware that I could buy it from the pharmacist as I would have done that if I had of known.

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Maya View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Maya Quote  Post ReplyReply Direct Link To This Post Posted: 09 April 2008 at 4:28pm
You can get a SA within 24 hours if it's urgent, it's just that most GP's don't know this, and most paeds don't have the time to spend chasing them up. We got Mercedes one thru by the next day, they faxed it to the GP and the pharmacy.
I think a bigger issue is the amount of time it takes to actually get to SEE a paed - they should have some sort of interim process whereby GP's can issue numbers and then have them validated by a paed within say 2-4 weeks to give people a chance to actually get a paed appt, esp in the smaller centres.

I'd support your lobby tho Andie! I have a contact for the CEO of Allergy NZ if it helps...
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Bizzy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bizzy Quote  Post ReplyReply Direct Link To This Post Posted: 09 April 2008 at 5:18pm
i have no idea of how hard it must be but would def add my support if needed...

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james View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote james Quote  Post ReplyReply Direct Link To This Post Posted: 10 April 2008 at 9:00am
yep i,m with deb on this will offer surport
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Andie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Andie Quote  Post ReplyReply Direct Link To This Post Posted: 10 April 2008 at 2:16pm

...AWESOME!!!  Emma that contact would be great, thanks.  Just PM me the guff!  I have a friend around the top of the MOH so I'll grill her for how to best go about working within their processes too. 

Andie
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Andie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Andie Quote  Post ReplyReply Direct Link To This Post Posted: 10 May 2008 at 7:43pm

Okely Dokely... I've copied the submission that Allergy NZ is about to make to the Govt into the 'General chat' section.  There's instructions in there for how to add your support to the submission, and it's very easy - one wee e-mail with your name, DHB and contact details, saying that you support the submission.  If anyone is keen to collect signatures then please sing out asap as well (we've not got long to get them) as Aimee gave me the forms for them, so she and I both have some I'm sure we could be persuaded to part with

...I'm going door-knocking this week! 

Andie
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ElfsMum View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ElfsMum Quote  Post ReplyReply Direct Link To This Post Posted: 10 May 2008 at 9:50pm
do we copy and paste that whole email..even the bit that tells us what to do etc...so absolutely everything under the blue?
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Andie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Andie Quote  Post ReplyReply Direct Link To This Post Posted: 11 May 2008 at 2:32pm

Nope, you just e-mail them and state that you support the submission that Allergy NZ is making, include your name and address and which DHB you fall under.  No harm in copying the whole thing if you've already done that though. 

Andie
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ElfsMum View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ElfsMum Quote  Post ReplyReply Direct Link To This Post Posted: 11 May 2008 at 4:39pm
oh sorry thats what i thought it said to do..in the other one something about copying under the blue writing or something:) will do now.
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ElfsMum View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ElfsMum Quote  Post ReplyReply Direct Link To This Post Posted: 11 May 2008 at 4:40pm
oh i re read it..thats if you are passing the email along...ok done:)
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