All posts by Melinda Seed

The E-patient and the Dinosaurs.

Melinda Seed writes for Twice Diabetes

Time and again I find myself nodding at conferences or lectures when I hear a “patient’s” story of how the internet has or does make a huge difference to their quality of life/management of a medical condition or disease and its treatments. So it was again as I listened to e-patient Dave who told his story of engagement with the healthcare system following his diagnosis with stage 4 renal cancer.

 

Slide from Dave’s presentation

Dave’s basic request “let patients help” seems unassuming enough and his definition of ’empowerment’ also seems like a modest aspiration. Continue reading

If Healthcare Really Were Patient-Centric

Melinda Seed writes for Twice Diabetes

Patient-centred care is a bit of a buzzword and a few sessions at #ADSADEA were devoted to it. There’s no definition of the term but it seems to refer to individual health practitioners listening to and responding to patient’s concerns during consultations. That’s all good and well but is that all there is to patient-centred care? ¬†It got me wondering about what the health care system would be like if it was run by people with diabetes instead of the government/doctor/bureacracy mash up we see today.

Here are some ideas I had: Continue reading

Useful Info from Australia’s Diabetes Conference

Melinda Seed writes for Twice Diabetes

Before I attended ADS-ADEA’s Annual Scientific Meeting I did a little survey of what people with diabetes were most interested in hearing about at conferences. As the survey was largely completed by my friends in the D world, it is unsurprising that they were almost entirely type 1s and most had had diabetes for at least 20 years. ¬†The topics of most interest ¬†were new technology, research with only a few more saying stuff that was relevant to life with D now as opposed to the cure and psychosocial issues. Many people also said the main benefit to them of attending D conferences was the opportunity to socialise with other people with diabetes.

So here’s my best effort at rounding up the categories of most interest from ADS-ADEA 2017:

Technology

Continue reading

The Internet’s Not A Thing Anymore!

Melinda Seed writes for Twice Diabetes

It’s true get over it!

Do you hear any sensible person saying things like

“Don’t look at any television news/read the newspapers or news magazines because they’re full of false information and negativity.” ¬†or

“I never go to parties or social gatherings because they’re full of negative people or somebody might say something that’s untrue to me.”

No?  Funny that neither do I.  Of course the simple and obvious answer to comments like that is to choose your media source and/or your social events more carefully and be discerning about what news or information you view as credible. Continue reading

‘Patients’ Vital For Sharing Conference Info

 

Melinda Seed

It’s always great when a piece of research confirms what you know to be true but others have doubted. It was super good timing when I came across this great finding published just a couple of weeks ago in the¬†Journal of Internet Medical Research, 2017, August 17 19 (8):e 280

Engaged patients increase information flow, expand propagation and deepen engagement in the conversation of tweets compared to physicians and scientists.

It concludes that Continue reading

Beyond Normalising Mental Healthcare in Diabetes

The psychosocial aspect of diabetes is a bit like the weather everyone’s always talking, but nobody does a thing about it. Such was my view preceding DX2 Melbourne where I was one of a cast of thousands participating in a webcast about mental health and diabetes.

The consensus view (I think it was unanimous) was that psychosocial care should be normalised as part of diabetes healthcare. I agree 100% with this. I recommend Renza’s post at Diabetogenic¬†about the webinar and particularly the importance of ending the stigma around mental health. ¬†Frank of Type 1 Writes was also on the panel and has written insightfully about this topic too. ¬†The focus of the panel discussion was on seeking help at times of distress but I’d like to take things one step further than this and talk about

Prevention!

It is my contention that not only does standard diabetes care fail to heed prevention strategies for psychosocial distress but it actually causes or exacerbates mental health issues in people with t1 diabetes. Continue reading

Don’t Be Just another Brick In the Diabetes Wall

Melinda Seed writes for Twice Diabetes

Healthcare is a highly structured environment and everyone has their assigned rights and responsibilities that belong to those roles.  Those within the system are highly motivated to maintain the status quo to keep the forces of chaos subdued.

Diabetes, particularly type 1 is troublesome to the health status quo. For starters none of us can ever be the ideal patient. We can’t be healed in the “you’re good as new” kind of way and the professionals have to hand over their traditional roles to us. We are the ones doing the injections, the blood testing and keeping track of our health. ¬†It is little wonder that many professionals view diabetics as troublesome patients.

As if this isn’t bad enough, many of us with diabetes (and other health conditions of course) choose to speak to each other and publicly about living with diabetes and we’ve been able to do so very effectively via social media. ¬†This sort of activity is threatening to the system and the gatekeepers want to fight or control it. Continue reading