One of the speakers I was most looking forward to hearing from at DX2Melbourne last week was Greg Johnson, CEO of Diabetes Australia. Professor Johnson was leading a session on diabetes advocacy, and I was thrilled that he would be engaging with a room full of consumer advocates.
Professor Johnson talked about the history of diabetes organisations in Australia (with a book of the exact title in tow!), with a movement by people with diabetes, for people with diabetes. Many of the original goals around patient centred care remain the same today, suggesting that we may have to reinvent our approach towards them.
At the time there wasn’t much of an understanding of the psychological aspects of diabetes. Establishing the Australian Centre for Behavioural Research in Diabetes (ACBRD) in 2010 was a big step towards helping better understand those elements and improve the quality of life for people with diabetes.
He highlighted the importance of the National Diabetes Services Scheme (NDSS), which is responsible for the delivery of subsidised diabetes consumables here in Australia. There were 106,000 newly diagnosed people with diabetes registered on the NDSS in the past 12 months. 9,000 people didn’t fit within type 1 or type 2 diabetes, while a further 37,000 were diagnosed with gestational diabetes.
He talked about advocacy, most notably the win on securing funding for Continuous Glucose Monitoring from the federal government in under 21s. This election promise was finally delivered when new Federal Health Minister Greg Hunt took over the role earlier this year. Many consumers didn’t realise the years of groundwork that went into achieving the outcome we have today.
How do we, as advocates, get out out there and create change?
How do we empower the consumer voice, and lived experience?
There’s a real need for us to come together, listen to many different stakeholders and advocate for ALL.
There’s a lot of frustration from people with diabetes who are still seeing shaming messages from diabetes organisations.
People don’t feel empowered to raise awareness and seek out communities.
These were just some of the questions and comments raised by the attendees in the room. Despite some robust discussion among the advocates, I didn’t feel that I got many answers to those questions during that session.
Sitting amongst some of the most influential diabetes advocates in the country, I was itching to know what I could do to help bring about change. I wanted to know where consumers sit in the scope of what Diabetes Australia is trying to achieve.
To be honest, I often feel frustrated by communications from diabetes organisations. When I think about what people with diabetes are doing in the real world – chatting in closed Facebook groups, writing powerful blog posts, reading the scoop on the latest tech, sharing opinions and organising amazing events and meetups – these things often feel ignored, rather than supported.
Professor Johnson rounded out his talk by saying that advocacy doesn’t end once a decision is made, and that we have to keep working with people to create change.
I feel that revisiting the level of engagement with consumers would be a powerful way for diabetes organisations to bring about further change.
Disclosures: Abbott Diabetes Care covered my travel expenses from Perth to attend this event. Further disclosures can be found at the bottom of this post.
I agree Frank! If an organisation is to truly advocate for people with diabetes then they need to listen to them and be a vehicle for their voices. I guess the CEO attending DX2 is a start let’s hope for more opportunities to work with our D organisations.
Thanks for the vote of confidence, Mel. It would be nice to have some sort of a forum like this hosted by Diabetes Aus or similar one day.
That’s what we are aiming for at PDC with our consumer advocacy group. We feel this is so important moving forward and therefore have committed investment into this amazing group of people even before some of the larger organisations!
I think PDC are doing an amazing job on that front. It’s been amazing watching our committee and events gather traction in a few short months thanks to the input from people with diabetes.
Blood Sugar Trampoline
I agree that a lot of diabetes organisations aren’t clued into the d.community as much as they should be. I also know that they don’t realise how influential their followers could be if we knew how best to help.