Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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Australia - govt survey on chronic conditions

Discussion in 'Advocacy Projects' started by Hutan, Aug 21, 2015.

  1. Hutan

    Hutan Senior Member

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    From the #MEAction site (via Emerge)
    http://www.meaction.net/2015/08/12/australias-discuss-primary-health-care-for-chronic-conditions/

    A link to the Australian government survey on how to better manage chronic and complex health conditions. There's lots of scope for raising awareness about ME and giving ideas about how to improve things for us and people with chronic conditions generally.

    It's long and tedious - they ask for written responses, not just picking from options. But you don't need to read the discussion paper before answering and you can skip questions.

    It may make a difference. I don't see why non-Australians can't answer too.

    "The Australian Government has released the discussion paper on ‘Better Outcomes for People with Chronic and Complex Conditions Through Primary Health Care‘ and is asking for your views on the paper via an online survey.

    The discussion paper examines using technology in healthcare, effective patient care and how health outcomes are measured.

    The survey results will contribute to the reform of the Australian health care system and Medicare.

    It is a long survey but you can save your answers and return to them later."​
     
    Last edited: Aug 21, 2015
  2. alex3619

    alex3619 Senior Member

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    We have so very much scope here to make a difference, though how officialdom responds is another question. I hope to do this later today or tomorrow, if the option is open. If so I may say more.
     
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  3. alex3619

    alex3619 Senior Member

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    We should probably start, before doing the survey, with a discussion on the paper. I want to read it in the next day or so, and the survey will have to wait till then.
     
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  4. alex3619

    alex3619 Senior Member

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    We have till Thursday the week after next to respond. That would be Wednesday US time.
     
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  5. Hutan

    Hutan Senior Member

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    I've started it but have taken a break. When you leave the survey, you arrange to get an email which allows you to go back to your entries.

    You can move backwards in the survey if you want to add something to a previous entry. Thankfully, moving backwards in the survey doesn't wipe out your latest entry.

    Looking forward to your comments @alex3619.
     
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  6. GcMAF Australia

    GcMAF Australia Senior Member

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    These types of forms store the input data and so you can update any section. This is very common
     
  7. alex3619

    alex3619 Senior Member

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    This paper is good and dangerous at the same time. It looks to be about the start of a NICE like regime here in Aus. Its about managed medicine, not the best medical science. While in general the community is well served by this, specific individuals may be greatly harmed. It rests on oodles of assumptions, many of which I have repeatedly argued are wrong.

    One of the options being discussed is fixed government/institutional payment to a medical team for services. Elsewhere this can result in problem patients being dropped. In the UK you can, at some hospitals, turn up for treatment only to find that they have no money to treat you

    Centralized medical management often comes with "guidelines" that can result in dumbing doctors down,and cookbook medicine. Difficult cases again get left out of the system.
     
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  8. GcMAF Australia

    GcMAF Australia Senior Member

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    agree
    i am wondering if the whole thing is a bit of bulldust
    same old same old
     
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  9. Hutan

    Hutan Senior Member

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    May well be. But I still think it is worth the effort to put forward our views. If a number of us mention ME, it could make a difference.

    I like the idea of small group clinics for patients with a chronic disease (eg diabetes, ME). I've heard the idea works well, with the GP and nurse running the sessions building up some real expertise in the specific illness and the patients able to learn about coping with/treating the illness from each other as much as from the health practitioner. And because people are grouped, there is more time. I think these groups would tip the balance of power towards the patients and also tend to produce medical professionals who can advocate for the needs of their patients.

    I also think there is huge scope for applying modern data management to patient data. For example, lab tests, which I do my best to collect and enter in excel spreadsheets so I can see what is happening over time. No one else does this, so if I don't, a lot of things can be missed. (Lately one lab company has been providing printouts with past tests, but if I use different companies then results are all over the place). With all the various specialists, some of whom don't bother to send a letter to the GP, it gets hard to keep track of what tests have been done.

    Certainly it is worth mentioning how poorly people with ME are served and how there are basically no doctors with a lot of knowledge/keeping up to date on advances for our illness. The need for more research. The inappropriateness of rehabilitation centres offering CBT and GET as cures for ME.
     
  10. alex3619

    alex3619 Senior Member

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    @Hutan, I intend to comment on the survey later, maybe later today.

    I don't think this kind of managed care means what you think it does. I suspect you will wind up with strict rules on what you can do, and down the track there may be sanctions if you don't. They speak of patient contracts, things we are responsible for.

    I think we should indeed comment on how poor the system is for many with invisible diseases, not just ME. We should also point out that in the long term the only really good solution is effective treatments, which means research, research, and more research.
     
    Last edited: Aug 31, 2015
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  11. GcMAF Australia

    GcMAF Australia Senior Member

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    Some clinics have been persecuted by the authorities
     
  12. alex3619

    alex3619 Senior Member

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    I saw this happen to my doc in 1993, and he was not the first. It is also clear that a more recent doc of mine is pressured to toe the line.

    What a national "evidence" based approach might do, if its ever implemented, is institutionalize all this. The emphasis appears to be on cost management rather than patient management in a medical sense. Both NICE and HMOs pioneered this overseas. The current system here is a bit like a defacto medical management system.

    One of the best antidotes for EBM is however its sister movement, EBP. We need to systematically train doctors how to be smarter about all this, or in other words how to do their own investigating and separate the bad research from the good. It looks very much like this rarely happens, though in part that is due to poor information systems and very little time to investigate the literature for busy doctors.
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    With cfsme we need to be treated individually . Cookie cutter medicine where everyone is treated the same is going to find alot of failures.

    We need drs to problem solve individuals and allowed to think outside the box. We dont want drs to be protocol driven but protocols should be in place as a guideline .
     
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  14. alex3619

    alex3619 Senior Member

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    Wow, it took a while to write my answers. I agree with @heapsreal, we need doctors to solve problems not follow formulas, and I emphasized this again and again. I pushed for evidence based practice (not eb medicine) a few times. I pointed out that capitated services result in the patients most in need being abandoned. Complex and chronic disease cannot follow a formula.

    I kept pushing for more links between clinical practice and research, and mentioned centers of excellence.

    I kept emphasizing that patients need to be in the loop, and mechanisms must exist for errors in medical records to be corrected.

    Oh, and I pushed an idea I have been thinking about for mobile nurse practitioners and social workers to visit patients in their homes. The most sick simply lack medical provisions that are appropriate. We have an excess of nurses, lets use them to provide better care for the most in need.
     
  15. Hutan

    Hutan Senior Member

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    Very good work to everyone who has done this survey.

    There is still time to do it. See the link in the first post.

    If you give considered answers to every question, it would take a long time. But you can choose not to answer most questions and just put in a few answers on the issues you feel strongly about. If you have 15 minutes, that's enough to do something useful.

    Yes @alex3619, it does look a bit like the survey may be planned to provide support for a push to having private health insurers 'manage' chronically ill people and other similarly scary concepts. (All the more reason to do the survey and click on the 'no' options).

    It is a platform for us to get across the horribly inadequate services for llnesses labelled as chronic fatigue syndrome here in Australia and the very high economic and social costs that are the consequence.
     
    Last edited: Sep 2, 2015
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  16. ahmo

    ahmo Senior Member

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    OK, then I'll give it a second go. I was so put off by things that had no meaning, I just shut it down after a few pages.
     
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  17. GcMAF Australia

    GcMAF Australia Senior Member

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    Federal senate meeting today on chronic diseases
    Afternoon session on Lyme
     
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  18. taniaaust1

    taniaaust1 Senior Member

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    oh crap, Im disappointed I didn't know about this earlier as I would of liked to have contributed to that survey. You cant no longer do it .

    " Public consultation has now concluded.
    Thank you for your time. "













    "
     
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  19. GcMAF Australia

    GcMAF Australia Senior Member

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  20. taniaaust1

    taniaaust1 Senior Member

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    Who's a senate MP I could send something to if I get around to it, who would be best?. I think its very important to try to push things at this time the issues out there around chronic illness (not just lyme but any uncommon severe chronic illness), I'd like to tell one I went to jail due to unmet disability support needs.
     
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