Month: September 2017

Putting Patient Centred Care Into Practice at #ADSADEA2017

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There are still a few more sessions from this year’s ADS-ADEA conference that I hope to cover over the next couple of weeks, as time and brain capacity allows.

One of the buzz words at this year’s conference was the concept of ‘patient centred care.’ As a consumer, it felt extremely frustrating to sit in on several sessions hearing all the talk about it, while knowing that in reality it’s not always being delivered. 

On the first afternoon of the conference, I ducked into a workshop chaired by Diabetes WA about putting person centred care into practice. In attendance were mostly diabetes educators and other healthcare professionals. Melinda of Twice Diabetes was also sitting in on the session with me, and she has shared some of her thoughts on patient centred care here.

Professor Timothy Skinner took to the stage to tell us that there was no ‘one’ or ‘right’ definition of patient centred care. He gave us four statements for attendees in the room to consider.

“All the decisions that affect the progression and outcomes of diabetes care are made by the person with diabetes.”

“All the barriers to effective diabetes self-management are in the individual with diabetes interpersonal (social) and intrapersonal (psychosocial) world.”

“All consequences of diabetes are experienced by the person with diabetes.”

“Every individual is always making the best decision they can to optimise the quality of their life.”

Professor Skinner noted that person centred care occurs when healthcare professionals act in congruence with these four statements. I still don’t quite know how I feel about these. In one way, I agree that the person with diabetes should be the ultimate driver of their diabetes decision making. Or, that this should be the ultimate goal. Yet if these are assumptions that healthcare professionals are making in light of an undesirable outcome, then they certainly seem to imply blame on the patient.

Our table then had to discuss this prompt.

I really thought that this statement reinforced one of the sentiments that I continually echoed throughout my time at the conference. I don’t represent all people with diabetes out there. Melinda and I were likely among the more ‘switched on’ and ‘connected’ consumers. While I might head into a clinic appointment with a list of notes and knowing exactly what I want to ask, this may not be the case for every other person out there.

I had a very frustrating economics teacher in High School who used to answer questions with questions. But in this instance, this is exactly the approach I would be giving to patients expecting to be told what to do. Healthcare professionals need to start empowering consumers to make their own decisions. Healthcare professionals should be arming consumers with information and resources that will assist them in making their own, informed decisions.

My attention waned towards the end of the session, and I think it was simply because I don’t believe the answer to providing patient centred care should be so complex.

Patient centred care is simply delivering what the consumer wants, rather than what the healthcare professional wants. If the consumer doesn’t know the answer to this question, then healthcare professionals need to be supporting the consumer to find out what it is that they want.

Disclosures: Diabetes Australia provided me with a media pass to attend the ADS-ADEA 2017 conference, with the view that I was interested in attending and delivering my own honest insights to the wider diabetes community.

Throwback Thursday: Thinking About An Insulin Pump

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Almost two years ago, I attended an insulin pump information evening. Today I’m looking back at that evening, and some of the reasons why I began thinking about pumping.

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Last night, I attended an information session on insulin pumping.

I’ve been on Multiple Daily Injections since I was diagnosed five years ago. I’ve never seriously considered an insulin pump, and I can’t say that I know too much about them. I’ve thought about going to one of these information sessions over the years, but it was just one of those things that I never got around to. Okay, truth be told I procratinated on RSVPing to those events until it was too late. Over and over.

I guess what motivated me this year was the fact that I am now a part of the Diabetes Online Community. I think, talk and write about diabetes every day. I feel more motivated towards my diabetes managment, just from interacting with you. I see so many of you blogging, tweeting, screenshotting and instagramming pump stuff each day. I want to understand it. And I want to seriously consider it as an option going forward.

Representatives from a few of the insulin pump companies were there to chat to before and after the session. I’ve never seen such eager salespeople out there in full force, desperately wanting our business. When our fantastic host asked for some sample tubing to show us, it literally seemed like a race to see which rep could get to her first. As I asked one of the reps if a meal bolus was as simple as inputting the number of carbs into the device, she began hurriedly cramming in as much information as she could before the talk resumed. I’ve never seen anything like it.

The topic of Continuous Glucose Monitors came up briefly. As I have written in recent days, Continuous Glucose Monitors aren’t subsidised by the government here in Australia. The cost of purchasing a CGM device and its operating consumables is excessive. While having a CGM may not matter to myself, I know that it could make a world of difference to young children and parents out there.

I thought it was rather interesting to hear the representatives in the room quickly removing themselves of any responsibility for those excessive costs. They urged us to write to our Members of Parliament. They urged us to lobby the government for subsidies towards CGMs and diabetes devices. As though it’s out of their hands.

These companies are responsible for the excessive costs of these devices. I hardly got the feeling that these people genuinely wanted to help me make my diabetes management easier. I so badly wanted to know if they even had diabetes themselves!

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Excuse ranty, 2015 Frank. In hindsight, that evening probably could have been designed a little bit better. The good news is that on Thursday October 12, Perth Diabetes Care will be hosting a tech evening, designed by people with diabetes. I’ll be speaking about my own journey with technology, all of the highs, lows and everything I wish I was told on that evening. If you’re in Perth I highly recommend you come along, have a play with the tech and meet other people with diabetes. Details below.

A Medical Alert Bracelet That I Actually Like Wearing!

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I’m not fond of Medical Alert Bracelets.

They’re fidgety.

They don’t look nice.

Every time I see one of those small round stainless steel emblems on someone’s wrist, I automatically think of some kind of allergy or sickness that I hope I won’t get.

In the past, I’ve only worn my bracelet when I’m travelling, alone or a fair way from home. Situations where an emergency may be more likely to happen…

Earlier this year, I made somewhat of a resolution to put more of an effort into wearing my Medical Alert bracelet. I’ve kept it in plain sight atop my chest of drawers, so that I’ll remember to put it on when I go to grab my wallet and keys and watch. I think I’d rate my adherence to this resolution a 4 out of 5.

However, I still can’t get super excited about wearing it.

Catalogues from Australian Medic Alert arrive in my mailbox every year, showcasing their latest and greatest ranges. But to be honest, nothing really appeals to me. It’s that same round stainless steel emblem, perhaps with a fancier band and a price tag that I know I won’t get my money’s worth from.

Last month, I was contacted by Lace from a company called American Medical ID in Texas. American Medical ID have been around since 1994, and their aim is to bring people stylish Medical ID jewellery options that they love and would be proud of wearing.

Lace kindly sent me this Lynx Trilogy bracelet, and it is probably the nicest Medical Alert bracelet I have ever worn.

What I love most about American Medical ID is that there is no annual membership tied to the purchase of a Medical ID bracelet (although it is available as an optional add on). I have been extremely frustrated by price hikes from the Australian Medic Alert Foundation, and I am starting to question whether I actually need to be paying $49 a year just to have my identification details stored in a database. I’ve almost always got identification on me when I’m out and about.

The most important thing to me is that a Medical ID can identify my medical condition in an emergency. Paramedics here in Australia are trained to look for bracelets, necklaces and even tattoos, so big tick there. This bracelet also has plenty of room for engraving, with four lines of 15-18 characters available on both the front and the back of the bracelet. I’ve simply gone with my name, ‘type 1 diabetes’ and ‘insulin dependent,’ but there was plenty of room to add more.

I was also most impressed to see that American Medical ID have an online store for Australian customers, trading as Universal Medical ID, and a dedicated Australian customer service team.

After 2 weeks with this bracelet, I absolutely love wearing it.

I’m also really happy to find more choice in the Medical ID market here in Australia, because I shouldn’t have to wear or pay for something I’m unhappy with.

Thinking about a Medical ID for yourself? Lace has provided me with this guide on how to choose your own Medical ID.

You can find American Medical ID here, and their Australian contingent, Universal Medical ID, here.

Disclosures: American Medical ID sent me a Lynx Trilogy bracelet after reading one of my earlier blog posts on Medical ID. All thoughts and opinions expressed here are my own.

Technology Changing Diabetes Outcomes at #ADSADEA2017

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Another standout session from my time at the ADS-ADEA conference was a symposium on technologies changing digital health outcomes.

Professor Brian Oldenburg introduced us to the ‘new’ health communications landscape in a digital era, which was nothing new to many of the consumers in the room! The promise of technology is great, but how do we ensure that it has sufficient reach and sustainability? With technology ever evolving and enhancing, keeping up with it is a real issue.

The buzz word of the conference popped up once again, with talk of the need for ‘person centred’ design in these digital technologies. I felt that this would be a great opportunity to engage with digitally savvy consumers, such as the DA People’s Voice team who were all there frantically tweeting in the room! I would hope that the healthcare professionals in the room were reassured by the promise of digital technologies complementing, rather than replacing their fundamental role.

Digital health programs were challenged by their usability, engagement and outcomes. As we were introduced to a digital diabetes coach, I was really struggling to see how such a program would be engaging or motivating. While it’s true there is no judgement in a robot’s voice, there are also no expressions of empathy or other human elements that help us to foster trust. I was also skeptical that older people would have the computer literacy or appreciation for these programs. Many still prefer to be served by a teller at the bank, or by a person at the checkout. I’m a big advocate for providing options and not forcing technology on those who don’t want it. However, I was surprised to hear that these programs were being taken up by both older and younger people.

You can see the digital health coach for yourself and decide:

Bec Johnson of the Telethon Type 1 Diabetes Family Centre was next to take to the stage, talking to us about how digital technologies have played a fundamental role in helping the family centre to reach across the whole of WA. Can I just say how nice it was to sit there as a West Australian, having something that the East Coasters around me envied? You can check out my sneak peek inside the Family Centre right here.

Bec began talking about how isolating type 1 was for her, and her sentiments just echoed among many of the consumers in the room. She shared that it took 10 years until she first began connecting to other people with diabetes through the Reality Check forums here in Australia. Those forums were her saviour, and she knew that online communities would be a pivotal part of building a type 1 community here in WA.

The Family Centre’s closed community Facebook group is about connections, rather than information sharing. I was rather impressed as Bec told us that the group had ‘conditioned’ this culture among the group, with many participants quick to politely call out posts seeking clinical advice. New entrants to the group are screened with a series of questions, in order to maintain a safe space for parents to share some of their deepest darkest thoughts. The Facebook group also allows consultation with the community on events or programs, in order to deliver the needs of the community.

Bec highlighted the Diabetes Detective program, which would not be possible without shared CGM data and remote contact with Diabetes Educator Amy Rush to smooth out any blood sugar issues. Other examples of online education from the Family Centre include the ‘Cyber Carbs’ online carb counting course and Type 1 Babysitters training. Bec also touched on online crowdfunding, raising an impressive $10,000 for the Family Centre for her swim to Rottnest Island earlier this year.

I was only saying last night how it often feels that the contribution of an actual person with diabetes doesn’t feel valued by healthcare professionals, conference organisers, organisations and companies in the diabetes space.

What I loved most about Bec’s talk was how much it proved the value of having a person who has hands on experience in diabetes, working in diabetes.

Also, I’d really love to see the foundation of the Telethon Type 1 Community translate into something for young adults one day.

Disclosures: Diabetes Australia provided me with a media pass to attend the ADS-ADEA 2017 conference, with the view that I was interested in attending and delivering my own, honest insights to the wider diabetes community.

400 (+1)

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Today, I’m thinking about what I’m most thankful for as someone living with diabetes.

The inspiration for this vlog comes from Diabetes Research WA, who are holding their first ever ‘Thank You Week,’ and you can find out what it’s all about here.

This also marks post number 400 (+1) here at Type 1 Writes, and I’d just like to say a big ‘thank you’ for sharing this journey with me!