DBlog Week 2016: The Healthcare Experience

Day Four brings us to the topic of The Healthcare Experience: "Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!"

I wrote this post in advance, but due to the changes going on in Australia right now, I wanted to rewrite it. So settle yourselves in for a long one because I'm stepping up on the soap box again (unrelated but I really need a cool graphic like Renza at Diabetogenic). 

To start with I'd like to say that this is potentially not the most interesting area for everyone and I understand that. So please, no obligation to go through all of this. But it's something I'm passionate about which means I do go into a lot of depth! I am a youth representative for Trapeze, which is a service that assists young people aged 14-25 with chronic illness (and known to the Sydney Children's Hospital Network) transition from the paediatric sector to adult healthcare services. In short- I'm big on healthcare services and a big part of my blog is addressing the gaps in the system, particularly surrounding type 1 diabetes and adolescence into adulthood.

As usual, views expressed on this blog are my own, and are not those of Trapeze or anyone else. I also don't get paid to mention them/link to them or their content. This is my personal blog. I just happen to really like them!

Carrying on, I'll split this into sections because my healthcare experience is enormous!

The Main Team

My main team used to be an endocrinologist, diabetes educator, and my GP. Now I just have an endocrinologist and a GP. I'm not lamenting that though, it's amazing. My endo is basically 3 professionals in one and is incredibly responsive. She emails me on weekends, it's great. But the drawback is that to get this service I had to enter the private sector, because the public system of seeing a junior doctor (and a different one each time) didn't work for me at all. I like one on one contact with someone who knows me and my condition well. 

My GP is also very supportive, and whilst she doesn't know much about my T1 management, she always asks how it's going and tests for ketones when I'm sick. Plus she tells me how my illnesses or medications might impact my sugars. In short, no issues here. These guys are brilliant.

The Support Services and Allied Health

First support service was Trapeze and they're brilliant. I also consider dieticians and psychologists allied health/supporting services. I'm very lucky to have had excellent experiences with these professionals. One thing that could improve is communication across professionals, but as a healthcare student I understand how hard this is. Travelling to different places to see these professionals is also a bit of a drawback. My dream? One place where I can access everyone at the same time in the same building. Again, they're wonderful and really listen to my concerns so I feel enabled to take control of my own condition. 

The Government

Oh we were doing so well. 
Shame.

I know that a huge number of people reading this aren't from Australia so let me give you a very brief rundown of how it all works here. We have two main parties, the Labor Party and the Liberal Party. Currently, we are under the Liberal Party, also known as The Coalition. The Prime Minister and leader of this party is Malcolm Turnbull. It was Tony Abbott but we chop and change PM with the change of the season these days. There is no limit on how long someone can be PM, unlike the US where you have the term system. Centrelink is a government department that give funding/allowances/concessions to those who need financial assistance for whatever reason. Medicare is related to Centrelink and cover some things, but for other things like insulin pump coverage you need Private Health Insurance. 

Anyway! There's an election coming up soon because the PM called a double dissolution and so we have to go and re-elect everyone all over again in a few months. Such fun.

The main issue at the moment is CGM coverage. In Australia we don't get any subsidy at the moment for CGMs, and they're not under private health insurance either. They're deemed unnecessary, a luxury item. Recently Malcolm Turnbull and the Health Minister announced that if The Coalition is re-elected they promise to put in $54 million toward subsidising CGMs for 4000 people under 21. For my view on that check out my post linked at the start. 

There is a gaping hole in the system, and that gaping hole is full of young adults and adults with Type 1. 

The government seem to have this funny idea that Type 1 Diabetes is a childhood disease and when you turn 18 (the age where you can legally drink, vote and call yourself an adult in Australia) it disappears into magical fairy dust. 

Who knows where they got that from.

I have had nothing but drama from Centrelink the minute I turned 16 (the age you can make many of your health related decisions in Australia). Cancelling of health care cards, allowances, and general confusion. It was atrocious and I spent far longer than I care to remember on the phone waiting for a customer service rep to pick up. This was the first year they didn't accidentally cancel my health care card. I almost cried from joy.

This is a big big problem. Services should be available and targeted toward people over 18 with T1. It does not disappear, it does not get easier. I should not stop receiving a health care card because I stop studying. We have a chronic illness, an expense that everyone else does not have to pay. We need those concessions as children, and we need them now.

I know I am very fortunate to live in this country, and our healthcare system is fantastic as a whole. But this gap is not okay in this country or in any other. These organisations should work with the people and their medical professionals to provide a service that is helpful and accessible. Your quality of health care should not depend on your funds/socioeconomic standing. 

In my view, everyone is entitled to quality health care. It's a basic human right. Type 1 Diabetes is not a childhood disease, it is chronic. It lasts forever. 


So what is my ultimate healthcare model? One where the patient is treated as an expert in their condition, an equal, and capable of making their own decisions. A model where financial support is available and easy to access for those who need it. A system that is cross-departmental, where everyone knows everything and you're not trekking between services telling the same story again and again. A system where your health is not used as a vote grabbing device in the lead up to an election. 

Sadly, I don't think anyone has got this quite right yet.

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Facebook: https://www.facebook.com/adiabeticsrollercoaster 

Comments

  1. Great blog. I'd love a HCC, I would like to own a house one day.
    Services really do stop for type 1 adults.


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    1. I'm honestly pretty concerned about losing my HCC once I finish studying. I don't know how everyone manages that.
      That should be the next step, HCCs.

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  2. Interesting thoughts. I'm infuriatated that CGM is seen as a luxury item. Over here we can apply for funding when pregnant but otherwise you can apply but you're wasting your time. Think the governments would change their minds if there representatives experienced it first hand!

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    Replies
    1. It's irritating! I wrote to my local member ages ago and he passed it on to the health minister who at the time had a stock standard reply of no CGM but here's a bunch of other options you can use already. And then suddenly they change their tune around election time!

      I don't know how it goes with funding and pregnancy here. I'd hope that's a thing.

      Yes to them experiencing it. Hook them up to saline or something and go through the motions of checking and bolusing/injecting.

      Delete
  3. We also have an ongoing discussion in the US about CGM's. Hopefully we will get to universal acceptance sooner than later

    I referred your blog to the TUDiabetes blog page for the week of May 16, 2016.

    ReplyDelete
    Replies
    1. With you on that one. Thanks Rick!

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  4. Thanks for putting words to my own frustrations! Living in Australia despite great medical care has its challenges. You've hit the nail on the head!

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  5. Thank you for sharing. I'm in the US so I don't know much about Australia's healthcare so it was interesting to read about it. There really is a big problem going from adolescence to adulthood with T1D. That was definitely my most difficult time. I had to switch endocrinologists and my new one was awful. I really struggled. Also, I can't believe they don't deem CGMs necessary in Australia! I couldn't live without mine!

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    Replies
    1. Sad to hear that problem happens overseas too. Yep! I've never had one because apparently bgl meters are sufficient!

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  6. best of luck getting the CGM covered. in the end, it will save loads of money b/c your bs control can be so much tighter with it. i know YOU know that, i just hope they figure it out soon!

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    1. Thank you! Yes I hope they do

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  7. Interesting...I haven't quite had the courage to make the leap towards a private endo. I think it's such a personal thing and it's a case of finding the right one for you. I'm glad you do have one that you're comfortable with. And the political stuff, spot on!

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    Replies
    1. Definitely a personal thing. I got lucky that the one recommended to me was amazing.
      Cheers :)

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