HCPs

Championing the Consumer Voice

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I walked away from the Australasian Diabetes Congress feeling that consumers had an even bigger impact than last year.

This was my second year attending the joint Annual Scientific Meeting of the Australian Diabetes Society (ADS) and the Australian Diabetes Educators Association (ADEA). Diabetes Australia pioneered a fantastic initiative called the ‘People’s Voice,’ which brought the voices of a few bloggers and consumer advocates to the Congress.

I don’t, for a minute, ever pretend to be representing anyone other than myself at events like these. I fully accept the privilege I have, knowing that I do not even come close to representing all people out there with diabetes. I’m super proud of all of the people with diabetes in attendance who drove this narrative home to the delegates, speakers and pharmaceuticals in attendance. In particular those with gestational diabetes, those with type 2 diabetes and those who are not as engaged as we are.

On Wednesday afternoon, I was lucky enough to contribute to a session which presented case studies on ‘co designing’ diabetes services with the involvement of people with diabetes. I spoke about my involvement with Perth Diabetes Care through the Young Adult Diabetes Committee. For more of a taste of what we do, you can find our Facebook page here. Melinda Seed at Twice Diabetes also spoke about her involvement with Reality Check and the resources that she helped to develop for people with diabetes.

As I said last year, I was so humbled to be in the presence of so many people that simply wanted to learn from us. The idea of this session was to plant ‘seeds’ in the minds of delegates, and we really did delve deep into some of the issues that were prohibiting the engagement of people with diabetes. I spoke about how big of a step it was for me to come along to a gathering of people with diabetes for the first time, and also sharing how much of a ‘slow burn’ some of our work in this space can truly be.

I have personally found the Diabetes Educators to be the most supportive, open minded and willing to learn from us. They are truly the people who approached me the most during the course of the week, and hopefully they will only bring more healthcare professionals and researchers along for the ride with us. I really do apologise for our narrative that, at times, can come across as assuming that all healthcare professionals are not person centred. We really are just passionate about person centred care!

The consumer voice was also championed on Friday morning during a technology symposium. As Professor Anthony Russell presented a narrative about the administration of insulin in a hospital setting, the dialogue that followed on Twitter was more interesting.

One of the biggest issues that I have heard from other people with diabetes is the forced relinquishment of self management in a hospital setting. People with diabetes are forced to relinquish their insulin. People have had to fight for the right to hold onto their insulin pumps or CGMs. Highly capable people with diabetes are often treated as incapable of self managing a condition that they spend relentless hours managing on their own.

I really hope to see a resource developed around the rights of people with diabetes to self manage in a hospital setting. If there are two organisations that I would like to see tackle this issue, it would have to be the Australian Centre for Behavioural Research in Diabetes (ACBRD) and Diabetes Australia.

People with diabetes also slayed the Twitter conversation. In a short two years, it really does make you wonder what they ever did without us? Ashley Ng ran a Twitter masterclass with the support of ADEA, encouraging healthcare professionals to get online. Just look at these amazing stats!

I am super proud of everything that the people with diabetes in attendance achieved throughout the week. I truly feel that the consumer voice was championed, and that we have proven our worth.

This is EXACTLY why we need to be at events like these.

Disclosure: Diabetes Australia covered my registration, travel and accommodation costs to attend the Australasian Diabetes Congress. My opinions and my time, including the annual leave I took from work to attend, are my own.

“You Have Very Poor Control.”

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“You have very poor control.”

No mention of how I was feeling after my first couple of weeks living with a demanding chronic illness that would affect me for the rest of my life.

No mention of how my family, friends, peers, work and uni were treating me in the aftermath of my diagnosis.

No mention of how I was handling the insulin injections, finger pricks, food, physical activity, hypos, hypers and stigma of living with diabetes.

After a quick flick through my diabetes logbook charting some less than ideal blood glucose levels, I walked out of my very first endocrinologist appointment eight years ago on the verge of tears. This endo had clearly spent more time with his head buried inside a textbook than he had in the real world, and I was left feeling very little empathy for what I had been going through.

Despite several weeks of learning about diabetes under the wing of a very supportive diabetes educator, it took just one ten minute consult with that endo to undo what I believed was some solid progress in managing my diabetes.

That is exactly the reason why the language we use when talking about diabetes is so damn important to me.

I’m insulted when people think that this issue is about nothing more than political correctness over the phrase ‘diabetic’ or ‘person with diabetes.’ I honestly couldn’t care less which of these words you prefer to use. What I do care about is how your choice of words, sentences, body language and attitudes could impact others.

My diabetes educator could read my face the minute I stepped out into the hallway, and knew that something wasn’t quite right.

I tried to laugh it off. I told her that I hadn’t taken too much of what that endo had said to heart.

But man, those words hurt. They still hurt today.

Being mindful of language is about more than just being polite or trying not to offend someone with your choice of words.

The language we use when talking about diabetes has the power to create reality.

You can also check out my five reasons to be mindful of language when talking about diabetes in my latest column for Diabetes Daily.

And commit Diabetes Australia’s Position Statement on Language to memory!

Where Is The Patient Centred Care?

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When are you seeing your doctor? the Pathologist asked me as I followed her into the demountable Caravan that doubled as the ‘D’ block at my local hospital.

It won’t be until he has the results and calls me in for an appointment I replied. I already signed the release form to receive my results when I came in, but with Australia Post and the Easter long weekend I’ll probably be waiting well over a week.

When did you come in to have your bloodwork done?

Yesterday morning.

Seemingly puzzled at why someone would want to know their own test results, she typed my surname followed by my first name into the computer to check the status of my results.

They haven’t all been done yet. They’re about 80% complete.

Is my hba1c there?

There it is. Don’t tell anyone I told you! She half joked, acting as though she had just committed a serious crime in telling someone their own test results.

Fantastic! I exclaimed, my eyes fixed at where the Pathologist had motioned on the computer display that looked like something out of the 1980s.

Five years ago, I wouldn’t have given a stuff about some stupid test results. I certainly wouldn’t have made a detour on my way home from work because I was that eager to know. I probably would have just let my doctor vaguely lecture me in 2 weeks time, rather than making my own evaluations about the condition I live and breathe 24 hours a day.

I feel like the system isn’t even designed with the patient in mind. Why aren’t we making it easier for patients to engage in their own health matters? Why aren’t we encouraging, and praising self management efforts? Why is lived experience not more highly regarded?

Where is the patient centred care here?

Now you can go home and enjoy your Easter long weekend! the Pathologist replied as I thanked her for her time.

But don’t eat too much chocolate! She exclaimed as I stepped outside into the crisp afternoon, the door slamming shut behind me.

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.

How I Wish Mental Wellbeing Was Approached on Diagnosis

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Another week, and another column up over at Diabetes Daily. This week I’m reflecting on how I wish that mental wellbeing was approached on my diagnosis.

“I personally wish that my diabetes healthcare professionals had asked me how are you going more often. Not how are your blood sugar levels going. Not how is your diet and exercise going. Not how are the number of hypos you are having every week going, either. A new diagnosis is a huge thing to deal with. A little empathy and understanding would have gone a long way in helping me to acknowledge that sometimes it might be okay not to be okay.”

You can check out my full column over at Diabetes Daily right here.