Representing D1's - What do you want?

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Representing D1's - What do you want?

Postby terryleew » Thu May 08, 2008 8:24 pm


I am on the consumer rep panel trying to develop a statement about what is important for D1's and consumer health. A few members have made posts, and I have made a few of my own. But truth is, it is all based on my opinion. Follows is an edited version of my last post. I would be really interested in any feedback as to whether there is any support for these types of ideas.

"[...comments about how to lobby Govt edited out for your sanity, but that helps explain why the sentences refer to it that follow] ... So, for example, patient focussed care and co-responsibility are still quite high on the NSW agenda at least. That led me to think about how to provide incentives (a big Rudd core idea) for D1's to actively participate in improving their health and avoiding the pitfalls of long-term complications.

I have noticed how easy it is (the burnout issue) to slowly lessen the focus on good care of yourself. I have also noticed that even being as disciplined as I am, I am willing to use any excuse not to do as I should on some days. So, I am well controlled, hard working and have a simmering annoyance with the medical profession because I have seen too much of them for too little benefit in return.

I have no idea if I fit any profile of a normal D1. But motivated by my own failings, I think some systemic incentives that are patient focussed might just result in some improvement in behaviour. For example, (my soapbox), why isn't money being invested more in bloodless or painless BGL testing? [Okay, Kate tells me this is happening, but I have yet to see a sustainable or affordable product compared to the number of new meters etc flooding the market] It seems to me (consipiracy warning) that there is a lot to be earned selling test strips. So Govt. investment incentives for R&D funding for such a device (which would be a big money spinner) based on the improved BGL's afforded by additional testing from such a device should generate a good enought benefit-cost ratio argument for even the most hardened health bureaucrat.

Along the same lines there seems a big push by GP's to sign up D1's to a chronic health management plan. While that is all well and good and driven from genuine concern and benefits to the health system, such a system focus does not give incentive to tired D1's who do not want more medical procedures, particularly pathology and vague GP advice. However, if the patient focus philosophy was added, perhaps targets could be added and incentives given for achieving those targets. Things like lowering the long-term BGL, losing weight, improving lung function (as an indication of fitness) might generate some sort of reward in terms of lower Medicare tax, or even some type of rebate via the tax system (off-setting the cost of all those test strips etc, or a gym membership etc).

Another thing might be making access to understanding D1 easier. It is fine to read all the stuff on the net, but how about having someone who actually has time to help you sort out your personal quirks and how they fit with D? My experience is that the GP has the time but not the understanding, the endo has the understanding but neither the time nor an interest in breaking data down to understanding, and community nurses have neither understanding or time. But a funded service staffed by a Kate, Mel and like-minded and qualified souls could make a huge difference in terms of net based and telephone based assistance. Having a centralised information source that is easily disseminated across the country saves the problems of access and plays to the current Fed trend to try and coordinate across state health boundaries.

So there you have a brain download. Now time to jab that finger yet again and eat some lunch."

If any of this resonates, or you think is BS, or you think there are other incentives, or more important things, NOW is the time to vent your spleen so that you can help inform me to help get the message hopefully to somebody who can actually do something about it.

Another day, another balancing act
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Postby Lilla » Wed May 21, 2008 9:21 am


Of all of it I like your ideas of help with motivation and information best.

I like the idea of "health coaches" for D1s. Perhaps psychologists or D educators trained in sitting down and setting individual goals WITH the person with D1 and devising ways to achieve them that are appropriate for the individual. The one size fits all is never going to work with D1s. Or any other chronic illness for that matter.

Or a mentor system where experienced D1s are trained to assist others. ??


I'd like appointments with these psychologist/health coach/D educators covered by Medicare.

I'd like more public information explaining the difference between Type I and II.

I'd like every pharmacy to be forced to be a NDSS provider. A lot don't do it because it's not a money spinner. Now that type II is on the rise there is more reason to have every pharmacy providing NDSS products.

I'd like pump supplies available at Pharmacies too.

I'd like insulin to be available without prescription like in the UK and other countries.

I'd like greater tax rebates for diabetic related expenses.

I'd like podiatry and optometry/ophthalmology covered by medicare. Eyes are to a certain extent but more would be good.

If I think of any more Ill let you know!
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Postby Mel » Wed May 21, 2008 9:48 pm

Just for info,

THere is Medicare subsidy for psychologists if accessed via your GP, please see here I think the major issue is finding a psych who has the slightest idea of type 1 d, I believer there is one in Sydney...............

Optomtometrists can bulk bill as can opthalmologists although I am a big advocate of people with d seeing opthomologists with experience with diabetes, opthos can bulk bill, in addition the eye hospital in Sydney has public free clinics as do some d clinics eg I think you can get an optho exam with fundoscope and dilated pupils at POWH d clinic.

D educators can be seen for free thru any public hospital.

If you want free you can get it all free at public hospitals, if you want the convenience of private care you have to pay if your practitioner doesn't bulk bill.

You can't get insulin in the UK without a script, see Kate's article on living in London INsulin is free there but you have no choice in the system, on balance I think the AUssie system is far superior.
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Postby Anne » Thu May 22, 2008 7:37 am

Mel, you're right, insulin is a prescription only medicine in UK and must be prescribed by a doctor. As a person with diabetes, all prescribed medicine is free, including treatment for other illnesses, even if not D related. #

With the new NHS system, people can choose where they want to be seen, particularly in foundation Trust Hospital (granted some independence), but this is limited by waiting lists etc in the public (free) medical care.
Carpe diem
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Postby artemis » Thu May 22, 2008 9:53 am

Podiatry can also be accessed through your GP via an Enhanced Primary Care Plan. Once you have one of these you can get 5 podiatry sessions per year and claim through Medicare.
Infundo ergo sum.
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Postby lisyloo » Mon Jun 30, 2008 12:53 pm

Hi Terry

i think your ideas are great. i of course particularly support the idea of better educating the public about diabetes (see seperate rant on 60 minutes last night...), including advice on what to do when we are unconcious (i have a card in my wallet and diary saying "if unconcious do NOT give insulin injection!" as i am petrified of this happening).

when i was in the UK i had all of my prescriptions for free due to my diabetes. i was only there for 6 months but it was fabulous. i guess we can't seperate between type 1 and 2, and there is already a lot of worry over the costs to the health system for the rising numbers of type 2's...

agree with Lilla re the pharmacies being NDSS suppliers. i am currently waiting on a delivery from over a week ago for diabetes supplies vecause my local pharmacy, that IS an NDSS supplier, isn't open when i am home!
Better to regret something u did than something u didn't do...
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Postby Argeaux » Tue Oct 07, 2008 11:14 pm

I'd like to see a non-funding idea tried.

A buddy system set up between people who have been diagnosed for a long time and those newly diagnosed, facilitated by existing Diabetes Educators.

Like the AA sponsorship system.

I think this would also have benefits for longer term diabetics, as they might find out about new ways of managing the disorder.
Life can be a little bit of yum.
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