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Work today involved celebrating 45 Victorians who have lived with diabetes for 50 or more years. There are no words to say how humbled and inspired I am by this group.
Congratulations to this year’s Kellion Victory Medal recipients.
The keynote at this year’s Awards was presented by one of my favourite diabetes people, Cheryl Steele who I (and many others) most fondly refer to as ‘Aunty Cheryl’.
Cheryl giving her wonderful keynote address.
The Kellion awards celebrate not only the person living with diabetes, but also their support network – something Cheryl pointed to in her keynote address.
I have attended about 15 of these ceremonies. They never get old or stale. Today was an absolute career highlight for me; emceeing the awards was an honour and privilege.
The stories I read out today fill me up with hope and I am inspired to keep going.
There were many quote-worthy moments from today’s ceremony, but my favourite came from 50 year recipient, Vikki Donovan who gave the following advice:
‘Don’t let diabetes impede on who you are and what you can be. Life is for living, diabetes is for managing.’
I’m a long way off getting my Kellion medal. But I will get there one day.
*It’s Thursday in Australia, but Wednesday where we are.
We got here. Thirty-two hours, four plane legs (thanks to an unexpected stop in Tampa due to thunderstorms closing Orlando airport), a kid who vomited her way through pretty much all thirty-two hours of the four plane legs, and hour and hours of low blood sugar somewhere over the ocean.
And now on my wrist is a bright green band. I’ve reconnected with friends I’ve known for years here and made new ones. And there are strangers by the pool with matching green bands and matching pumps hanging from their bathers.
My family are getting to know the Friends for Life family, being welcomed as warmly as I was when I first met everyone.
‘They look like diabetes people,’ said Aaron as we were walking around the lake the other evening.
‘How do you know?’ I asked him, wondering if he had developed a diabetes-detecting superpower.
‘She has a pump attached to her pocket,’ he said, nonchalantly.
And she was. I hadn’t even noticed.
It’s going to be a big, big week!
Follow ow along at home:
The Diabetes Hands Foundation MasterLab Summit – “A More Effective Summit’ is using #MasterLab and Friends for Life is at #CWDFFL15
Yesterday was Social Media Day. Actually, it’s still going in the northern hemisphere.
And here is an example of how to be a dick on social media:
Now, after being a dick on social media, here is what you should do. (It’s actually quite easy.)
Instead here is how you keep being a dick:
(The Nick Jonas reference was in response to this tweet.)
Seriously CrossFit, shut up!
Also, if you want to insult all people with diabetes, how about trying something original? This has been done to death. Jamie Oliver did it earlier this year; Aussie comedian Dave Hughes did it a few years ago. And a pathetic little café in Sydney did something similar exactly 12 months ago today. It’s old…really old.
Making fun of health conditions is not clever. It shows ignorance and it is just plain nasty. How about you show some kindness and talk about how your program can actually help people living with (all types) of diabetes? Wouldn’t that be inclusive rather than divisive? Novel, I know.
Last word goes to the Diabetes Hero Squad (who makes me laugh daily!) with this.
Consumer engagement. There are a couple of buzz words if I’ve ever heard them.
Today, I am attending the Health Issues Centre Forum, ‘Listening to the Consumer Voice: what does healthy dialogue look like in 2015?‘ I was the opening presenter where I spoke about the role of the consumer in healthcRe.
My position is clear – consumers have a place at every conversation taking place about healthcare. Whether it be at a governance, strategic or operational level, the voice of the consumer should be the loudest and proudest in the room.
All too often, this representation is tokenistic. It is an all-too-simple ‘tick-the-box’ requirement of health services. And it’s the same in the broader health community.
Most of what I have heard today I have heard before. This discussion has been going on for a long time, and as one of the speakers said ‘Why are we even having this conversation anymore?‘ And he is right. Why do we need to be defending the right of the consumer voice? Why is it not a given?
My talk was followed by palliative care physician, A/Professor Natasha Michael who gave a fabulous talk about the challenges faced by clinicians for finding the balance between ‘benevolent paternalism’ and patient autonomy.
Her analogy was simple – if she contracts an electrician to do some work for her, the last thing she wants is the electrician to stand in her house and ask ‘Where would you like me to put the green wire? And the red one? And the blue one?‘ They are the expert – that’s why she called them.
At face value, that sounds reasonable. But actually, I don’t think I really am comfortable with it because it completely minimises the expertise I have gathered in the 17 years I have lived with diabetes.
When I expect to engage in a dialogue with my HCP it is not discrediting their expertise; it is acknowledging that I have something to bring to the table.
At a higher level, consumer involvement can emote difficult. How are consumers included in strategic decisions, on boards and at a governance level? And how does that work?
Possibly my favourite take-home message from today came from Damian Ferrie who is the CEO of Inner South Community Health. Damian said that measuring if consumers are participating in a meaningful way is quite easy: ‘If consumers have no power to influence in your organisation, it’s tokenistic.’
I wish I could say that I am seeing more examples of consumers having power to influence, but that isn’t the case. Our involvement is still tokenistic. It is largely unpaid which further reduces our worth.
And yet, health services and health organisations claim frequently that they are listening to the consumer voice, that consumers are critically important, that consumers are the basis of their work.
By and large, I think it is lip service, with primarily examples of organisations talking the talk, but not walking the walk. And that is why we are still having these conversations. We need to be. I wish we didn’t. But we do.
Tomorrow, I am flying to Boston to attend the American Diabetes Association 75th Scientific Sessions. (Play along from home by following #2015ADA!)
There will be a strong consumer (reminder to self – use ‘patient’) contingent, which is always terrific. I get to catch up with old friends from the DOC and hear what they have been up to. I learn about new consumer patient-led advocacy efforts that manage to cut through in a way that only people living with diabetes can. I am reminded that conferences ARE the place for people living with the health condition that is being spoken about at that conference.
I attend conferences with my eyes wide open and leave with great excitement. I see new technologies yet to be released here, or still in development. I hear from people on trials of new drugs and devices. And I see the potential and possibilities for making diabetes easier, more streamlined, more user-focused and feel inspired and hopeful. This is good.
But, I am approaching this conference with a slightly different attitude. With some of the recently announced changes to diabetes supplies in Australia (as I wrote about here and here), I really want to speak with some of my US DOC friends about what it means to be reliant on a health system that limits choice. We have never really had that to date.
Whilst we may not have access to every pump or meter on the market, the consumables for the devices that are here have been available to all. Distribution has been overseen by Diabetes Australia (please read the disclaimer in this post!!) – an organisation representing people with diabetes, not big business or shareholders.
Last night, I attended a dinner at Parliament House in Canberra for the Parliamentary Friends of Diabetes Group. It was a grand occasion, attended by many influential politicians. Health Minister, Sussan Ley made this comment:
This is, indeed a noble pursuit.
Diabetes Australia President, Judi Moylan stated:
I would ask that in amidst all of those politically-charged reviews, reports and cost-cutting measures that seem to be the focus of diabetes in Australia at the moment, the human aspect is identified. It is hard to find amongst all the facts and figures.
But it is absolutely critical for our leaders to consider if they want to do best by people living with diabetes. Extraordinary leaders would search for it, find it – and make sure they listen to it. And remember that those extraordinary leaders include people living with diabetes.
There is much inequality with the health system here in Australia. I know that we have it better than a lot of other countries, but unfortunately, it’s not fair for all. However, there are some things that are, indeed, great.
I have always been exceptionally proud of our National Diabetes Services Scheme. I love telling people about it when I am travelling, explaining how it makes the lives of people with diabetes considerably easier. We don’t need to get our health insurance providers involved; no one is forcing us to use one particular make of meter or strips because that is all that is covered; registering on the NDSS is not all that difficult.
The NDSS has been around since 1987, and in a health system of oft-quoted disparity, it is a shining light in its fairness. (I say this with full knowledge and understanding that people with type 2 diabetes do not have access to insulin pump consumables, but this therapy is primarily used by people with type 1 diabetes – even before the NDSS subsidy came into effect back in 2004.)
However, when it has come to needles, BGL strips and other consumables required in the management of diabetes there has been no discrimination; it has been available to all.
Until now.
Last week, Commonwealth Health Minister, Sussan Ley, announced that following the findings of the Post-Market Reviews of Products Used in the Management of Diabetes, BGL strips would no longer be available to people with non-insulin-treated type 2 diabetes as they have been to date, questioning the effectiveness of self-monitoring of blood glucose (SMBG) for this group.
The report (Part 1 – Blood Glucose Test Strips) announced that people with non-insulin-treated type 2 diabetes will have limited access to BGL strips. That is, access will be provided for up to 12 months’ supply of strips – initially six months and then an additional six months if it is determined the person with diabetes will benefit from further monitoring. The decision is in the hands of the healthcare professional – not the person with diabetes.
The Minister claims these findings to be in line with the Choose Wisely campaign, which, when it comes to type 2 diabetes, I also consider to be flawed.
When the PBAC reviews were first announced (back at the end of 2012), I wrote this piece for the Diabetes Victoria blog about why limiting access to diabetes consumables for any group of people with diabetes is potentially damaging – especially when it relates to taking ownership of managing diabetes – and short sighted. I actually think it is downright irresponsible policy making.
The findings of this review concern me – they worry me greatly. This is the first step in removing control of the tools we need to manage our diabetes in the way we choose. The removal of choice is destructive and limits our ability to tailor our healthcare to our needs.
I don’t have type 2 diabetes, so this in no way affects what I am able to access through the NDSS. But I know many people with non-insulin-treated type 2 diabetes who rely on regular BGL monitoring to assist them to live well with diabetes. They use it as a tool to make better food choices, noting how certain foods affect their BGLs. They use it to monitor the effectiveness of exercise as part of their diabetes management. And they use it because it gives them a sense of control, piece of mind and ownership over their health.
This is sending the message that non-insulin-treated type 2 diabetes is not serious. And that is a very, very dangerous statement to be making.
Disclaimer – I was involved in Diabetes Australia’s submission to the PBAC on all aspects of the Post-Market Reviews of Products Used in the Management of Diabetes. Diabetes Australia strongly supported SMBG for people with non-insulin-treated type 2 diabetes in Part 1 of the reviews.
I had a lovely dinner last night with a colleague and friend. We ate great food, drank terrific cocktails and didn’t shut up except for when the waiter was telling us the evening’s specials (and even then we ‘oohed’, ’aahed’ and ‘yummed’ our way through that).
At one point, my friend reminded me of a beautiful part of the book Captain Corelli’s Mandolin, a book I read when it first came out back in the mid-1990s.
As soon as I got home from our dinner, I searched for it so I could read the words again. Here they are:
When I first read the book, these words kind of washed over me. I was hearing them quoted a lot, and in the coming years I heard them read at weddings. They are beautiful words; read aloud it is beautiful prose.
But it wasn’t until last night that I read it and felt really understood it. The poem is an ode to enduring love, but that’s not what struck me. At least, not necessarily the love bit. But the endurance bit certainly did.
Over the last couple of years, things have been difficult. When I look at how I have been managing my diabetes, it has been a series of fits and starts. There are spurts of focus, then dips of almost denial. There are times of desperation and exhaustion and then periods of energy. It’s uneven. New devices see me get enthusiastic and motivated, but only for a short period. Then I return to the slump.
It’s not the exhilarating times that matter. Of course they are wonderful and enjoyable and sustaining and thrilling. Having a new pump or a new meter or a new CGM is a sure-fire way to get me thinking more about diabetes. But this doesn’t last. And it also doesn’t really count.
Equally, it’s not the slumps that matter.
What really matters is actually what you might call the boring times. It’s what comes before and after the flurry of interest of a new toy. Or the times around the ‘nosedives’. I feel best about my diabetes management not when I am stressed about how little I am doing or happy because I am so focused. It is actually the time when it is just there, plodding along, being considered at an ‘appropriate’ level. It’s not sexy. It’s not dramatic. But it’s so good because I feel relaxed and comfortable about it. It just is.
I am sure that there is something to be said about the fast-paced world we live in and this idea that we always need to be thrilled by something new. It’s too easy to get complacent and comfortable. That’s probably one of the reasons that I embrace new and emerging technologies with such zealousness.
However, if I was relying only on the new stuff to sustain me, it would never last. A new pump becomes just a pump very quickly. A new meter stops being new and shiny after a while and becomes just a meter. And a CGM may be magical and brilliant and life-changing until it become just another tool in the diabetes tool kit. That doesn’t make them any less important or valuable. But if I was relying on the excitement of the new, I would need a new toy every week or so!
The endurance of ‘just being’. That’s the sweet spot. That’s when I know I am getting it right. I just wish I could work out how to be there a whole lot more!
I am lucky that Aaron is always listening to new music. This CD was a recent purchase. Sometimes I hear something that makes me just so delighted. Like this live performance of my favourite track from the CD.
It’s kinda ingenuous to refer to today’s post as ‘Wordless Wednesday’ given the image below is full of words. Plus I’m typing words. So I may as well keep typing a few more.
Inspirational quotes give me the shits. Whether it’s posters on the walls of corporate offices or on the walls of my social media feed, they annoy me.
So here’s one for today!
This one, (found on the Diabetes Support Facebook page), I actually rather love. I am so guilty of referring to myself as a failure because I am not managing my diabetes as well as I would like to be. But at no time have I decided that my health is not worth the effort. And certainly, at no time have I thought that I am not the effort.
But I have slipped up. I have screwed up. I have lost focus and caved. I’ve given in. I’m busy. I’ve become lazy and I have been so, so, so, so distracted. This is a set back. Nothing more. Nothing less. A set back.
Pop over to the Diabetes Victoria blog for my post about this Saturday’s Diabetes Expo. It’s going to be a jam-packed day of diabetes information! If you’re going, make sure you come and say hi to me. I’ll be emceeing throughout the day.
Diabetes is really not a topic of conversation much for me when outside of work. And outside of this blog. I know – hard to believe. But when I am around friends or with my family, there may be a passing comment, but it rarely dominates discussion.
Having said that, we had our neighbours over for dinner last weekend and the ‘Pumpless in Vienna’ story got an airing – and not by me! It was interesting to hear it told from the perspective of one of the main characters in the story.
And then yesterday, while I was in Geelong, I had lunch with my team mate Kim (this is Kim!) and not once in our hour long chat did we speak about diabetes. Not once. In fact, it wasn’t until I got up to leave and mentioned to the waitress that I would love to continue to sit by the fire, but had to rush off to give a talk, and she asked me what the talk was about, did the word ‘diabetes’ come up.
‘Oh. Is it about type 1 or type 2 diabetes?’ she asked. Kim and I looked at each other with surprise – and a little delight. ‘Well, in this case both. But usually we work with people with type 1 diabetes,’ I said. ‘Our waitress over there has type 1 diabetes,’ she continued. It’s possible that Kim and I squealed at that point. ‘I’m so annoyed that I need to leave now – I’d love to chat with her. But Kim here isn’t going anywhere!’ And out I walked. I hope they had a chance to catch up!
I love a good diabetes in the wild story!
Other things occupying my small mind this week.
Cards to send when you don’t know what to say
I love these! They have been all over my social media feeds. They are such a wonderful idea. Emily McDowell has created empathy cards for people with serious health conditions.
I love the one that says ‘I’m really sorry I haven’t been in touch. I didn’t know what to say’ because often that is the case. We don’t know what to say. But if we have a friend going through a tough time, it’s not about us or our awkwardness. This card shows that even though you feel clumsy with words, you are thinking of your friend.
This is my favourite – and probably most relevant to diabetes. Please don’t tell me about you grandmother who lost her limbs because of lemons. Okay?
Numbers mean nothing on their own
I had a very cool Twitter exchange with the super clever Dr Rick Kausman after I tweeted a link to this terrific piece he wrote for The Conversation this week. Numbers (in this article’s case weight) only ever tell part of the story – and often not the most important part!
Quick! Time’s running out for MILES 2
Diabetes MILES 2 is about to close. Do it. Do it now! (Read about it. Read about it here!)
There is a place for Dr Google in our healthcare teams.
While seeking medical advice exclusively from Dr Google isn’t the best idea, there is no denying that the internet and social media are indeed a significant source of information that really can benefit people living with health conditions. I hear blogs are a good source of information and support. Apparently. So I’ve heard.
Have a read of this great piece from MD Joyce Lee. I think she gets it right when she says this:
Healthcare, wake up. It’s not the 1990s anymore.Social media, google, and the internet ARE medical therapy.
Dr House was wrong
What do you know about Lupus? Dr House seems to believe that ‘It’s never lupus’, but actually, sometimes it is. I’ve grown up with an understanding of this autoimmune condition. My gorgeous mum has been living with it kicking its arse for more than 30 years.
Here’s some information to brush up your basic lupus knowledge. And considering that May is Lupus Awareness Month, now is a good time to get some facts!
Sorry – couldn’t help myself.
Taking a diabetes break
Well kind of. There are some lucky teens taking an artificial pancreas for a spin in the real world as part of a study being run out of Yale. Read all about it!
There will be no sleep
Next week is Diabetes Blog week. It’s gonna be huge!
Happy Mother’s day, Mum!
My Mum is brilliant. She really is. And when she sent me this text message bagging the paleo diet, she hit new levels of brilliance.
Happy Mother’s Day, Mum. If I can be half the mother you are, I’ll be doing well. Love you. x
Diabetogenic 