Blacklisted for Seeking Help: When Private Care Leads to Public Punishment

You needed care, so you did what anyone would—you found a way to get seen sooner. But now, suddenly, you’re blacklisted from the public system; punished for taking control of your health.

“You can’t just skip the queue, see someone privately for a pump start and think you can come back to this clinic.”

“Well, just so you know, if you see someone privately, our clinic will no longer be able to help you."

Hold up. I thought we lived in Australia—a country where healthcare choice is a right? Yet here I am, hearing these words spoken to patients who are simply trying to do what’s best for their health. It’s heartbreaking. Seeking care should never come with punishment. So why does it?

These quotes come from a client who reached out to me for additional support. She was the mum (we will call her Jane) of a young girl who was struggling with her diabetes management. Jane was getting minimal support from her daughter’s school and, despite her best efforts, was unable to get a response in a timely manner from the public diabetes clinic.

Despite investing every second of their time into trying to get it right, over treatment of highs and lows by the school was sending Jane’s anxiety to a whole new level, and she was told there is a 2-year wait to start on insulin pump therapy… even though it’s the gold standard of diabetes care. When the burnout started to set in, Mum contacted me, begging for some support, and of course, I was very happy to help her out.

But Jane was told in no uncertain terms that if she saw a diabetes educator privately, she would no longer be able to access the public diabetes clinic. As most people know, specialist paediatricians and endocrinologists are hard to access privately these days, so when this ultimatum is presented, it is no wonder individuals give up their choice to see an educator privately.

In this country, we are so grateful for the ability to access public health services, but the whole community knows their resources are limited. Now, this is in no way a criticism of the public systems. We get that everyone is working hard to offer specialised services, but the reality is that there just isn’t enough capacity to get to everything for everyone. In an ideal world, we would all continue advocating for better public funding for these services so that they can meet capacity, but this cannot happen overnight. In the meantime, it shouldn’t be a forced decision between public and private services when your health is at stake.  

And this does not have to be the case. You have the right to choose! You have the right to healthcare services that meet your individual needs, the right to participate in decisions and to have whoever you want involved in your care team. The Australian Charter of Healthcare Rights applies to all people, anywhere across Australia. These rights mean that you cannot be refused care in any public health service.

This is right number 1 in the Australian Charter of Healthcare Rights (v2)

For some people, choosing to see a private diabetes educator is about convenience. But for people like Jane, it was closer to survival. Jane had nothing left; she was burnt out from the overwhelming burden of diabetes, crushed by the realisation that her hard work had made no difference to glucose levels, and so fearful that, despite her best efforts, her daughter was at risk of short and long-term complications from diabetes. This is no way to live a full life with diabetes, and Jane knew that an insulin pump could completely change their world. With another year or two wait in the public system, Jane and her daughter were clutching for relief and hoping a private educator could help them achieve this. Private diabetes education is about getting the care you need, when you need it.  

Private care goes beyond just blood glucose levels. It can reduce the overburdening of public clinics, helping to lighten their load and free up appointments for those who have no other option.  And the benefits don’t stop there. A private educator can support babysitters and carers, help schools struggling with capacity, create community connections, and address the overlooked mental health challenges of type 1 diabetes. Private care can offer flexibility a public system just never could: group workshops, info nights, telehealth, flexible appointments that don’t require missing school or work... This isn’t just an alternative; it’s an essential piece of the puzzle. So why is it being treated like a betrayal rather than a solution?

I want you to know that you have the choice over your healthcare. You cannot, under any circumstances, be refused care in a public clinic just because you engaged a private specialist who has the time and means to get to know you, work towards your goals and give you the support you need, when you need it.

If this is happening to you, there are things you can do about it!

• Learn more about your Healthcare Rights by visiting this link: https://www.safetyandquality.gov.au/our-work/partnering-consumers/australian-charter-healthcare-rights 

• Go online to the Health Complaints Commissioner and let them know that this has happened to you. The more people who do this, the more likely it is that something will change. Here is the link: https://hcc.vic.gov.au/make-complaint (for Victoria, search health complaints to find the agency in your state)

• Write to your state Health Minister to advocate for community-based health services and the essential role of private care.

• If you get stuck in this type of situation, give us a call at the Family Centre and we can help point you in the right direction.

Your health. Your choice. Seeking private care shouldn’t come with consequences. Don’t let the system dictate your access to the support you need. Know your rights!