All posts by Melinda Seed

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

There’s No One Size Fits All

Melinda Seed writes for Twice Diabetes

I recently came across a health/medical article that expressed concern about the level of variation in paediatric diabetes treatment between different paediatric endocrinologists.  I thought the assumption that there was one best practice approach interesting especially in light of the statement, Continue reading

Patients Excluded Conference ‘Values’ Patient Choice!

Melinda Seed writes for Twice Diabetes

 

Sometimes Twitter does your head in, and I’m not talking about the trolls.

 

 

 

Last week DiabetesUK tweeted 

 

Possibly seeing a marketing opportunity, @DiabetesAU (NOT it must be noted Diabetes Australia but the twitter handle of Natalie Wischer, who is apparently the CEO of the National Association of Diabetes Centres NADC) was quick to tweet her whole-hearted endorsement-presumably on behalf of NADC, as indicated by the first person plural.

We agree! We will discuss this & more at the Australasian Diabetes Advancements and Technologies Summit (ADATS)

Yippee!! I thought, how great there’s going to be a whole conference on diabetes technology in Australia AND they are totally into patient choice!

I rush off to the link so thoughtfully provided at the end of the tweet to book tickets, only to find this conference is patients excluded. You need a health care provider number to register. So no patient choice here BUT never fear patient choice is going to be discussed by a bunch of doctors and DNEs.  My irony meter is going off the scale.

Don’t despair though fellow-patients, despite the ban on our attendance, I’m assured that the patient voice will be heard. One person with diabetes and a health care professional are going to present on this “very important topic”. Ah right, I check the program, a person with diabetes is going to get 5 MINUTES in the program to present the consumer perspective and a psychologist (who doesn’t have diabetes)  is going to get 20 MINUTES to speak about psychological impacts.

Whilst I guess 5 minutes is better than no minutes for a consumer voice to be heard-I’ve got to say I find the 5 minute time slot rather insulting, especially as the speaker, @RenzaS is an experienced and professional presenter with many years experience at DAVic and in advocacy, it’s not like she can’t handle a longer time slot. 5 minutes is the allocation for “hearing the patient voice”. Hmmmm.

That aside, however, neither a 5 minute consumer slot or a psychologist presenting professional insights is patient inclusion, nor does it have anything to do with supporting patient choice in technology. Inclusion and patient choice is about allowing patients to access information to enable informed participation in healthcare.

I understand that professional organisations run conferences for their members and sometimes those organisations exclude non-members-it’s their conference after all. I also understand prohibitions on “consumers” attending conferences where drug companies advertise their products.*

This is fine, just don’t boast about your support for patient choice when your implementation of that support is to discuss it at a conference of health care professionals from which patients are deliberately excluded.  This just serves to highlight how very keen many professionals are to exclude “patients” from the dialogue of healthcare.

Without access to information, the patient will never be able to take control of their health decisions, I wonder if that’s the real reason we’re excluded, as the old saying goes, knowledge is power.

 

*@DiabetesAU tweeted to me that patients could not attend because of pharma sponsorship of the event. I have perused the program http://nadc.net.au/wp-content/uploads/2017/03/ADATS-Program-26.6.17-zip.pdf as at 7pm 3rd July 2017  and I can find no disclosure of links to pharmaceutical or other commercial enterprises at all. I would have thought transparency on commercial sponsorship would have been desirable to those attending, it is to me and I’m not even subject to the rules on pharma marketing.