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Re: [IPu] Planning a Survey ... continued 19/3
You've been busy Janette!
I'll get in contact with Kate tomorrow, but I'm sure she won't have a
problem with publicising any survey that eventuates. Equally, when it's
ready to go, I will throw it up on my site without a problem (helps being
the boss sometimes!).
I'd be very interested to see how many free syringes are given to IV drug
users per annum across the nation (although I know this is State based ..
or pretty sure it is?), as compared to the number of diabetics who are
registered with NDSS and are insulin dependent, and the number of pumpers
in Australia. I doubt there is any centralised record of pumper's numbers,
"The NDSS aims to enhance the capacity of people with diabetes to
understand and manage their life with diabetes and to ensure they have
timely, reliable and affordable access to the supplies and services they
require to effectively self-manage their condition."
Surely we can use this to our advantage somehow? Personally, I'd be dead by
now if I wasn't pumping, or at least blind, and I'm sure there are others
out there who would have nowhere near the same quality of life of longevity
prospect on MDI - yet we can hardly say we have "affordable access to the
supplies" required to maintain our diabetic health right now.
According the the DA page, free syringes are available nationwide now (due
to agreements signed by each state/territory government with DA)... I
wonder what the cost breakdown is? And I wonder how much each State
Government puts towards this funding ... and again, I wonder what DA are
doing with the funding they had for syringe supply now it's no longer used!?
Too much wondering ... it must be about my bedtime!
At 07:56 PM 19/03/2003, you wrote:
>I would really appreciate you getting onto Kate Gilbert (RealityCheck) I
>haven't spoken to her in ages. and your site would be good.
>Thanks for the phone numbers for:
>Dr Richard Simpson at Box Hill Hospital
>Cheryl Steele at Royal Melbourne
>Dr Neale Cohen at the Diabetes Insitute
>- emailed Michael Robinton from IP to ask about a survey. (I recall the IP
>system strips attachments). Someone on the US site did a survey and I think
>they got people to email them off line. I may be able to set up a page (or
>something) for the survey online ... depends on "No 1 Husband" ... no I don't
>have other husbands ... he's just very good (as in No 1) !!
>- left messages at Minimed and Medical Specialties Australia to check on their
>lobbying so far.
>Vicki Trench and John Douglas are back in Sydney, Thursday and Friday.
>- Rang HEROC (Human Rights and Equal Opportunity Tribunal) and the Disability
>Discrimination Legal Centre. Not good news I'm afraid ... told there are some
>exceptions / holes in the Discrimination Act, where Governments provide
>"special measures" ... like NDSS. This is because of ... you guessed it !!!
>COST ISSUES !!! It seems that Governments can decide to pay for a range of
>things that are helpful to "most" people with a disability (not all). Still
>have to double check the www.humanrights.gov.au web page for disabilities,
>there may be an issue still with the AAT (Administrative Appeals Tribunal).
>(I had secretly thought we could just go and "prove our case" with HEROC and
>get things paid for .... no such luck) !!!
>- rang Rhonnda Purtell (Manager NDSS) to ask about the agreement for NDSS and
>how it operates. Read the 46 pages and made some notes.
>I'd LOVE LOT'S MORE CONTACTS FOR HOSPITALS / EDUCATORS etc (names, email
>address or phone numbers). IF YOU KNOW ANY PLEASE FORWARD ....
>I suspect that many Pump Users aren't "on the net" like us and will need to be
>issued with surveys via Diabetes Units at Hospitals.
>Thanks for all the good feedback,
>Warm wishes and keep Pumping.
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