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Look, I could write a whole post here about why and how you can just put aside the idea of buying silly little Xmas gifts for Lois in accounting, and how Reginald in HR really doesn’t need more boxes of Lindt balls because people only truly like one type (dark chocolate for me) and the rest get thrown out.

I could remind you that it’s freaking hot in Australia right now, so the idea of gifting a rose, basil and chai scented candle is ridiculous because why would anyone want to light it and add another heat source to their already overheated house? (Also, stop making candles scented with chai.)

I could moan about how I despise the whole idea of Kris Kringle/Secret Santa, because honestly, I do. It’s nothing more than a waste of time and money.

I could tell you that I am pretty sure that the $30 gift voucher you are thinking of shoving into an envelope for Uncle Angelo is going to languish in a drawer and probably be forgotten.

I could tell you that the book of inspirational quotes that you are going to buy for the cousin you only see once a year will never be opened – and probably be re-gifted (possible back to you) next year.

You know, so I don’t need to tell you, that the half-wilted poinsettia you’re buying at the last minute at Woolies as a gift for the person hosting one of the three hundred Xmas drinks things you’re going to will wind up in the bin after the next three-day heatwave because your host can’t remember to water themselves, much less a seasonal plant.

I could urge you to put down the bath bomb because no one, and I mean NO ONE, needs or wants a bath bomb.

I could do all these things. But there’s no need; I’ve done it before and you know it all. If you really need to read those posts: here’s one. And here’s another. And Grumps has written about it here.

Basically, the message is the same. Think about forgoing those little gifts, and instead make a donation to Life for a Child, and know that THIS gift is actually meaningful. And by meaningful, I mean it will save the life of a young person with diabetes. That’s right: Save. Their. Life.

Insulin is expensive. And yet the dollars you were going to spend on a pretty mindless gift will provide life-saving insulin for around six months. Which sounds a lot better, right?

Good thing you know all this, and I don’t need to write about it again. And it’s also a good thing that you know all you need to do is click here to save a life.

P.S.

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I spent a lot of the weekend feeling a little sentimental. Our beautiful girl turned 14 and as usual, we reminisced, telling the story of the day she was delivered. And I reread my pregnancy diary, the feelings of intense excitement, anxiety, fear and anticipation flooding back. I remembered how, 14 years ago, the only way to check glucose levels was to do blood glucose monitoring. And I was doing that up to twenty times a day. My poor, poor fingers.

While I was remembering all this ever the weekend, I was holding onto an embargoed secret, knowing that an announcement about the expansion of the current NDSS CGM funding program was about to made. In between organising a weekend of birthday celebrations and wrapping gifts, I was also planning for the media announcement which would be taking place early on Sunday morning at a local women’s hospital. I took breaks in preparing food for Sunday’s birthday lunch and read running sheets, familiarised myself with the ‘talent’ who would be explaining what the new funding meant to them, and made sure that I knew where I had to be at 8.30am the following morning.

And amongst all that, I prepared myself for what I knew would be coming: disappointment. There would be a lot of disappointment because the funding package was not going to include everyone, and those who missed out would be upset.

This is my personal blog, and although I work for Diabetes Australia, this is about my own life with diabetes, and to a degree, my life around diabetes. I write a lot about what is going on in the ‘diabetes world’ – both in Australia and more broadly. Sometimes what I write is directly applicable to me; other times, it’s not.

Today, I am writing about the announcement that was made yesterday and I guess that the line between personal and professional is potentially going to get a little murky. Please read my disclosures at the end of this post carefully, because my bias needs to be strongly acknowledged – by anyone reading this piece… and by me while writing it. But I hope that also, people understand that I need to write about this personally too.

In a nutshell, yesterday’s announcement delivered an extra $100 million dollars to fund CGM to women with type 1 diabetes planning for, during and after pregnancy;  people aged 21 years and over who hold a concession card (and meet clinical criteria); and children and young people with ‘other insulin-requiring diabetes’ (for example, cystic fibrosis-induced diabetes). This is all on top of the current $54 million funding which provides free CGM products to children and young people up to the age of 21 who meet the clinical criteria. Also, Flash glucose monitoring has been added to the list of products available, meaning more choice for people with diabetes.

This is good news.

And yesterday, as I chatted with women with type 1 diabetes who had just had babies and were planning more, or were currently planning for a pregnancy, I knew just how much of a difference having access to this technology would mean to them.

Kelly and baby Grace with Health Minister, Greg Hunt, and CEO of Diabetes Australia, Greg Johnson.

I thought back to when I was pregnant and how it would have been so much easier had CGM been available then.

How wonderful that these women, and thousands of other women like them can breathe just a little easier knowing that they will be supported with this tech while planning and during their pregnancies – and the period afterwards. Oh – and then I remembered breastfeeding hypos, the jars of jelly beans on every flat surface in our house – including the back of the loo – and how, when home alone, I used to feed our baby girl on the floor in case I had a bad low and dropped her. CGM alerts and alarms would have been so brilliant then!

CGM is out of reach for so many people. It is expensive technology and I know there are people making sacrifices to be able to afford to use it. I know what that is like – back before pump consumables were on the NDSS, we had to budget $300 per month for lines and cartridges, tightening our spending on everyday items, forgoing holidays, meals out and other things we wanted to do so that I could continue to drive my pump.

Is it fair that the technology we use to keep us alive means we need to make such sacrifices. It certainly doesn’t seem so. And I know that is how people are feeling after the funding announcement was revealed yesterday.

Am I disappointed? To a degree, yes, I am. I believe that I, and other people with diabetes like me are every bit as worthy as women with T1D planning for to have a baby, and kids and young people with type 1 diabetes, and adults on healthcare cards. I completely disagree that type 1 diabetes is harder for kids than it is for adults, because actually, type 1 is tough at any age, and each age and stage of life has its own particular challenges.

But I refuse to see yesterday’s announcement as anything other than a positive step in the right direction, just as I saw the initial funding for children and young people a good thing.

People have missed out; people who will still not be able to afford CGM; people who desperately need this technology to live the best diabetes lives they possibly can. And that’s why yesterday is not the end to the CGM funding story. In fact, it’s a new beginning.

Also, I think it is important to point this out: An announcement like this does not happen quickly. It comes from years and years and years of work. CGM  has been in Australia for over ten years now. Yes – that’s right. Over ten years. So when you hear people referring to this as new or emerging technology, or saying it wasn’t around five or six years ago, that’s rubbish.

I can remember that pretty much as soon as CGM was launched into Australia, Diabetes Australia and JDRF Australia started to fight, lobby and advocate for this to be funded. How do I know this? Because I sat in meetings back then as we tried to nut out just how to approach the government for funding. What would work? What sort of model was achievable? How would the people who were most at need benefit? There are no easy answers to these questions. All we have to rely on is evidence and what the evidence shows is that there are some groups that benefit most from CGM technology.

Diabetes Australia, JDRF Australia, the Australian Diabetes Society (ADS), the Australian Diabetes Educators Association (ADEA), the Australian Paediatric Endocrine Group (APEG), and the Australian Diabetes in Pregnancy Society (ADIPS) have worked together to form an alliance to provide evidence-based submissions and information around CGM technology (amongst other issues). Why is this important? Because bringing together the peak consumer bodies with the peak professional bodies means that all stakeholders are represented, and it’s pretty hard to disagree when we combine PWD sharing our own stories for why this tech matters alongside HCPs talking about the clinical benefits.

At no time has this alliance ever pushed for anything other than funding for those with high clinical need. The idea of an upper age limit was never, ever promoted by this group – we never fought for access to be only for children and young people. Our original funding submission is a matter of public record and can be seen here and you can clearly see that we were advocating for what the evidence pointed to.

I am proud to have been a part of this work – for over ten years now. It is the very definition of ‘slow burn’. This slow burn is not all about being in the public eye and yelling about what we do. In fact, it is all very much out of the public eye. It’s monotonous at times; it can be repetitive and it takes time.

Yesterday we celebrated. Today we’re back at work, looking to how we get the next bit of funding secured.

And finally, we can yell and stamp our feet and say that we should have fully funded CGM for all people with type 1 diabetes. But that is never going to happen. If we look to other countries where there is funding available to people with diabetes of all ages, there is still clinical criteria that must be met in order for people to access reimbursed sensors and/or transmitters. Nowhere has a policy where anyone and everyone with type 1 diabetes can simply show up, put out their hand and be given a CGM. Instead, clinical need is used to determine who has access. I think that we need to be realistic about expectations of what funding will look like in the future.

DISCLOSURES

I have worked for Diabetes Australia since January 2016, and prior to this role, worked at Diabetes Victoria for over fourteen years. I have been involved in CGM funding submissions from Diabetes Australia and the alliance which includes JDRF, ADS, ADEA, APEG and ADIPS. I was also on the Department of Health’s implementation Committee after the initial $54 million CGM funding was announced. I have been involved in writing information and education resources about CGM and hosted a number of national webinars after CGM products were first listed on the NDSS. I have spoken at technology events held at Parliament House, sharing my personal experience of why I use CGM, and, more broadly, why this technology is beneficial to many people living with diabetes.

I use CGM full time. I do not receive any subsidy or discounts for using CGM, and fully fund transmitters and sensors myself. I am fortunate to have friends in Europe who have occasionally provided me with sensors when they have spares, and I am currently using a re-batteried Dexcom G5 transmitter. At the beginning of November, I spoke at a health professionals workshop for ADS where I demonstrated how to use the Dexcom G5, and was provided with one sensor for this demonstration.

The cutest baby ever.

World Diabetes Day is celebrated each year on Frederick Banting’s birthday. Banting, of course, is credited with co-discovering insulin. That happened back in 1921, so it seems almost unimaginable that people are still unable to access insulin because it is so prohibitively expensive. And yet, that is the reality for children and adults all around the world.

Children like Manuel:

Frederick Banting said ‘Insulin does not belong to me; it belongs to the world’. Insulin belongs to Manuel as much as it does to you and me. But until he, and thousands and thousands of children and adults just like him, can access insulin easily and affordably, Life for a Child will continue to try to bridge the gap.

Read all about Manuel here. His story should be told just like anyone else’s, and in his own words. He is living with diabetes; his diabetes story is his own.

And then, once you have listened to his story, consider making a donation. (Please note that there has been a recent change to where you donate. Start by clicking here.)

Each year, on 14 November, I thank Frederick Banting for my life. I can’t think of any better way to honour his memory than donating to Life for a Child.

Research Wednesday is not a thing. Until now. And probably just for today. But there are a few things across my desk that need input from people with diabetes and diabetes healthcare professionals.

Today seemed like as good a day as any to share.

If you can, please do consider participating in any of these online surveys that are currently open. And also, share any of the surveys with others who you think can provide their experiences too.

One for the women with diabetes

A few months ago, I wrote a piece about the need to really speak about women’s sexual health and diabetes. It was a follow up post to something I wrote on the same topic a couple of years earlier.

These remain two of the most read posts on Diabetogenic. Both of them resulted in a lot of messages from a lot of women – most of whom I didn’t know – saying that for years they had searched for information about how diabetes can impact on their sexual health…and had found very little. They also said it was rarely, if ever, a topic their HCPs discussed or asked about. Conversations followed on online platforms too. Clearly – oh, so clearly – women with diabetes were searching not only for information about these issue, but to connect with other women would had similar experiences. The number of times I read the words ‘I thought I was the only one’ was somewhat heartbreaking.

(Side bar…and true story: after that piece was posted, this happened on a Sunday evening at the local Woolies:

Click for original tweet…and replies

Good to know that someone thought it was a good idea. Even if it meant that I shopped at a different store for a few weeks after that.)

That post coincided with some research Kath Barnard was conducting which has shown that sexual health issues affect three quarters of women with diabetes. The way that women are affected can be different – it may be physical, or emotional, or a combination of both.

Now, there is a follow up survey which is hoping to gather more details of exactly how diabetes impacts on sex in women with diabetes.

One for the men with diabetes

Because diabetes is an equal opportunity employer, there is also currently a survey for men with diabetes which is also looking at sexual health and relationships. While there may be quite a bit of information available about erectile dysfunction, sexual health in men is more than that.

Just as I’ve had conversations with women with diabetes about sex and diabetes, late night conference dinners and drinks often lead to a little more candid discussion about some of the issues around sex that men with diabetes experience too. And it seems that just as women are searching for more information, so are men.

Kath Barnard has stepped up again with a survey for men. This is a last call for this one as it is closing soon.

One for the new mums with diabetes

If you are a woman with type 1, type 2 or gestational diabetes who is pregnant, or has been pregnant in the last year, please consider completing this survey from the NHMRC Clinical Trials Centre at Sydney Medical School (from the University of Sydney).

The aim of this research is to better understand glucose monitoring experiences and preferences of pregnant women with diabetes.

The survey has been open for a few weeks now, and participation rates are not great, so if you are able to spare 20 minutes to provide your input, please do. And also share with relevant networks.

One for the HCPs

This survey is JUST sneaking in as it closes today!

The Diabetes and Schools consultation is continuing, and now, paediatric and adolescent healthcare professionals, and HCPs involved in diabetes education and training of school staff are being asked to complete a short survey.

This will form part of the overall consultation and will help to shape the new, nationally consistent training program being developed by Diabetes Australia, ADEA, ADS, JDRF (Aus) and APEG.

There really is no time to spare on this one. You only have until tonight.

 

Everything is turning blue. In the US, today marks the start of Diabetes Awareness Month. Apparently, Diabetes New Zealand are also using November as an awareness opportunity, this year focusing on encouraging Kiwis to ‘Act now to live well with diabetes’. (You can read about their activities here.) 

While it’s not Diabetes Awareness Month in Australia, those of us in the Aussie diabetes world cannot escape that there is a lot of diabetes happening. We can choose to get on board or ignore it. Except, of course, on World Diabetes Day where we ring everything in blue circles.

Some years I’m totally gung-ho and all enthusiastic and happy to do the whole month. Other years I’m a little more subdued. This year, I think I’ll have a foot in both camps, which was apparent with my swinging mood this morning. I woke up and my attitude was firmly here:

But, after my shower as I searched for something to wear, almost automatically, I went straight for clothes that were blue. Blue. All blue! Every single thing: blue! (Including my eyeliner.)

Diabetes awareness means different things to different people. I firmly subscribe to the My Diabetes, My Rules philosophy, and that also encompasses the issues that we hold near and dear, and fight for with all the energy we can summon. And those issues will be different for different people.

For me, I’ll keep on keeping on throughout November, working on the issues that matter to me.  That includes neat little hashtags like #LanguageMatters and #NothingAboutUsWithoutUs. It also includes acknowledging that diabetes is a self-managed condition that we do ourselves more than 99 per cent of the time. I challenge ideas around consent and autonomy. I fight for us to be able to do diabetes in the way that we want – with the right support system around us, using what we need to be our best. I talk a lot about how diabetes is more than numbers and that screening and consideration of our mental health is just as important as screening and consideration of diabetes-related complications. And while we’re on complications, I have spent a great deal of time this year writing about how blaming and shaming people with diabetes and diabetes-related complications is damaging. I beg, beg, beg that Steel Magnolias not be held up as current case study for diabetes and pregnancy. Perhaps most loudly, I cheer the cause of PWD being represented, present, including, involved and highlighted when diabetes is on the agenda…any agenda! Life for a Child remains a cause very close to my heart and something I am privileged to be able to support. And I promote the value and need for peer support, clearly explaining how it is my friends living with diabetes – my tribe – who I count on most because they unquestionably ‘get it’ and that what we learn from our diabetes peers is absolutely critical.

The list is long and at first, it may look like I need to just settle on one or two things and do those properly rather than the half-baked mess it may appear.

But actually, when it all boils down, I think that the truth is that all those issues can be condensed into four main categories: Access, Respect, Choice, Health.

That’s what November is going to be about for me. I’ll keep banging a drum to what may now be a familiar tune. But there is lots more to do. And this month, I’ll be doing it in blue.

Last week, I spent a busy week at Australasian Diabetes Congress. I spent a lot of time with work colleagues, health professionals, the event organisers and researchers.

And I was fortunate because most of the time, I was around at least one of my peers. Between the #DAPeoplesVoice team, (Mel, Frank and David), other diabetes friends from home, (Ash, Kim, Gordon and Cheryl), and away (Grumps), there was always someone nearby who I could rely on to ‘get’ diabetes. (This is important always, but conferences have their own special challenges where diabetes mates are certainly appreciated to help keep some perspective!)

I have written countless times before about the power of peer support. I have also written that my peers have been the ones to have truly helped me through some of the most difficult diabetes situations I’ve faced – not necessarily with advice, but simply a knowing look, a nod of the head, or the words ‘me too’. Our peers help us make sense of what we are dealing with, provide us with endless support and help make us feel connected to others. And that’s important with a condition such as diabetes, because it is all too easy to feel that we are on our own.

Which is why I was so pleased to learn about ConnecT1ons, a new initiative from Diabetes Vic, which is looking to provide that support to another group within the diabetes world – parents of kids with diabetes.

It is undeniable that parents of children living with diabetes have their own brand of challenges. This was brought home to me again last week during the Diabetes and Schools Forum when parent of three children with type 1 diabetes, Shannon Macpherson, spoke about some of the difficulties she and her family have faced with her children in the school setting.

And again this morning, when I was speaking with a parent who is having a very tough time with her young, kindergarten-aged child. ‘Renza,’ she said to me, as she explained what was going on. ‘You have no idea. Having a child with diabetes is impossible because we cannot be with them when they probably need us the most.’  She’s right – I have no idea.

But other parents of children with diabetes would and do understand. And as they shared their empathy, they would also probably share some of the things they’ve done to help them through similar tricky situations.

Diabetes Victoria is looking to bring parents like this together for an event where they can meet other parents of children with diabetes. Plus, it’s a few days of respite from looking after their child with diabetes, while knowing their kid is safe (and having an absolute ball) at diabetes camp. What a brilliant idea all ‘round!

You can watch a video explaining the project here, and  hear from Jade, the mum of a young boy with diabetes share some of her experiences – and how parents just like her will benefit from ConnecT1ions.

As is always the case, finding funds for initiatives like this is a struggle, so today, Diabetes Victoria launched a crown funding campaign and is seeking to raise $15,000 to run ConnecT1ons. If more is raised, they can run additional events. The crowd funding is only open for a week, so please do consider making a donation – and doing it now! Click here to be taken to the Pozible page.

Congratulations to Diabetes Victoria for acknowledging that parents of kids with diabetes are a specific group that need support amongst their own peers. Extra huge congrats to Kim Henshaw who has spearheaded this project as part of her role as Children and Families Coordinator.

Please do donate. I returned home last week after spending time with my peers feeling refreshed, energised and connected. Parents of kids with diabetes deserve to feel the same by spending time with each other.

Not a functioning beta cell amongst us.

Disclosure

None! I was sent information about ConnecT1ons from the Communications Manager at Diabetes Victoria last week, but she did not ask me to write about it. I don’t work for Diabetes Victoria (I left there back in Jan 2016) and have had nothing to do with this new initiative. But you have to admit it’s a good one. Hence, this post.

Just over half way through the Australasian Diabetes Congress and after a massive few days, I’ve lost my voice, my way and, my ability to form coherent thoughts. Thank goodness for links and stuff.

Grumps Down Under

Before the Austalasian Diabetes Congress (ADC) even kicked off, our skies darkened, a final Winter cold-blast hit the east coast of Australia and The Grumpy Pumper arrived. Oh, and Melbourne lost our World’s Most Liveable City crown the day Grumps arrived in my hometown. I’m not necessarily saying these things are connected, but that’s a lot of coincidences…

Anyway, Grumps and I spent the next few days drinking Melbourne coffee and tackling the issue of language and diabetes, and Grumps spoke about his #TalkAboutComplications work. The ACBRD team has written about his visit last week here.

Coffee. Because: coffee.

Once Melbourne had enough of Grumps, we headed to  Sydney to do more work, including visiting the offices of Life for a Child and catching up with some of the team there.

#OZDSMS

After arriving in Adelaide, it was straight to the conference centre for the first gathering of Aussie diabetes advocates and bloggers for Ascensia Diabetes Care’s Social Media Summit.

Grumps was the special guest and as well as speaking about diabetes complications, he and I led a discussion about decision making in diabetes technology.

You can see what all the chatter was about by checking out the #OzDSMS tag on Twitter, (there was a lot of discussion!), and I’ll be writing more about it in coming days.

Hard at it!

DIYAPS at ADC

The next day, ADC kicked off with a symposium on the Brave New World of Diabetes Technology. Three early Aussie loopers – Cheryl Steele, David Burren and me – took to the stage and you can watch all our talks here:

New DIY Diabetes Technologies Position Statement at ADC

And if you make it all the way to the end (the symposium went for 2 hours all up), you’ll see Diabetes Australia CEO, Greg Johnson, launching Diabetes Australia’s new position statement about Do It Yourself Diabetes Technologies. I am so proud of this world first position statement, something that all diabetes stakeholders from all over the globe have been crying out for. (A reminder to anyone asking ‘Why don’t we have one of those?’: please don’t reinvent the rule. Adapt and use this for your jurisdiction and get it out there to start the conversation.

(Click link to go to position statement)

PWD on stage at ADC

Later in the day, the stage in Riverview 7, I was pleased to stand on a stage crowded with some wonderful diabetes advocates for an ADC first – a symposium on Co-design. More about this another time, but some familiar Aussie advocates shared their work which has really advanced the role of people with diabetes in the development and delivery of diabetes services, activities and resources. I was so pleased to be able to show the new Mytonomy ‘Changing the Conversation’ video as an excellent example of co-design.

Melinda Seed and Frank Sita at the co-design symposium

Sexy new pump hits Australia

And rounding out day one was the official launch of the Tandem t:slim pump which is making its way to our shores next month. This is a sexy, sexy little pump and I know there are going to be a lot of people very excited about it! (The pump is being distributed by AMSL Diabetes in Australia, so keep an eye on their website for more details.)

PWD at ADC

Pleasingly, there has been a presence of people with diabetes at ADC. Probably this is most visible when reading social media updates from the #DAPeoplesVoices. David Burren, Melinda Seed and Frank Sita have been invited by Diabetes Australia to provide updates and commentary of the Congress. They are tweeting machines and have been covering sessions, live-tweeting throughout. But that’s not all! Ashley Ng facilitated a Twitter workshop, encouraging HCPs at the event to get on Twitter and share what they were learning. Kim Henshaw is here from Diabetes Victoria; Tanya Ilkew from Diabetes Australia is also here. Grumps is here. And I’ve been doing what I can in between presenting and meetings.

I crashed last night with my voice gone, and fell asleep wrapped in the memory of a brilliant few days of impactful and meaningful advocacy efforts. There’s so much more to do. But these sorts of events, and opportunities to spend time with other people with diabetes who are certainly on the same wavelength and have the same commitment to bringing in the voice of PWD to all discussions, certainly help to advance our cause.

And one more thing

It looks like it’s that time again, Australia…

Disclosures

I was involved in the planning for the Ascensia Diabetes Care Social Media Summit and attended and spoke at the events Grumps attended. I did not receive any payment from Ascensia for this involvement or for attending the Summit. They did provide lunch and dinner, and gave me a free Contour Next One blood glucose meter. And an almost endless supply of coffee. Ascensia has not asked me to write about any of the work I’ve done with them. But I will, because I like to share and I know there are people who are desperate to know what was going on while Grumps was here!

Grumps was here as a guest of Ascensia Diabetes Care, who brought him to Australia to be the keynote speaker at the Ascensia Australia Diabetes Social Media Summit and to speak at other events about his #TalkAboutComplications initiative.

I still believe everything I wrote in this post from three years ago. And with the Australasian Diabetes Congress due to kick off next week, I thought it a good time to revisit.

People with diabetes have a place at diabetes conferences – even those designed for healthcare professionals. I truly believe that #NothingAboutUsWithoutUs needs to be the overarching philosophy when it comes to all diabetes activities, services and resources. Until we get to that place, I – and many others who feel the same way – will continue to plead our case for inclusion.

Put us on the program, on planning committees and at the front of your minds. 

_________________________________________________

Following the announcement at the end of last week from Diabetes UK that a new CEO had been appointed, there was much chatter online about whether or not the best person had been selected for the role. I have no opinion on this. I do not necessarily agree that you need a person with diabetes to be the CEO of a diabetes organisation – there are many other ways that meaningful engagement can take place ensuring that the organisation is representing the needs of people with diabetes.

What I was far more interested in was the direction the discussion took – specifically about the inclusion – or, as was being discussed, not – of consumers/patients/PWD/whatever you want to call us at professional conferences.

I watched on in silence as healthcare professionals, PWD and consumer groups all weighed in on the subject.

I am rarely a fence sitter, and on this issue, my position is very clear. Very, very clear.

I have yet heard a good argument as to why PWD should not attend diabetes conferences. In Australia, just as in the UK, we have the same limitations about people with diabetes having access to drug-branded information. This is archaic because, well, the internet. But whatever. (Read more here.)

Notwithstanding these code regulations, there is no reason that a PWD should not be welcome at a professional meeting about diabetes, hearing about diabetesresearch, learning about diabetes medications and technology and talking with the healthcare professionals working with people with diabetes. And if it is deemed that we are not fit to see the brand names of drugs, then keep us out of the exhibition spaces, but allow us to attend information and networking sessions. (For the record, I don’t support that idea either, but if that is what is necessary for us to be able to attend the sessions, then so be it.)

I would go one step further. PWD should be involved in the planning of these meetings. Why? Because surely if HCPs working with PWD are hoping to improve their knowledge and understanding of diabetes, a big part of that is gaining a better understanding of people with diabetes. And there is no one who gets that more than those of us living with diabetes.

I absolutely do not subscribe to the ‘why can’t we have a professional conference for health care professionals’ viewpoint. Well, of course you can. But there is no reason that PWD should not be involved in this and attend alongside healthcare professionals.

I’ve been more than a little vocal on this in the past. Search ‘consumer involvement’ or ‘PWD at diabetes conferences’ on this blog and you might just come up with a few things. I’ve given talks both here in Australia and overseas about it. I constantly expound the value of the consumer voice and consumer participation and consumer involvement.

The thing that interested me in the discussion I was following was just how hostile it was at times. With 140 characters or fewer at our disposal, we can’t always be as tactful as we might be in person. Sometimes, being direct is the only way. And knowing a few of the people involved in the discussion, tact is perhaps not a characteristic that they generally employ. I say that without any snippiness at all – it is part of the way they get their point across.  I get it – I am often accused as being like that and I wear it as a badge of honour. As far as I am concerned, the involvement of PWD is non-negotiable and if I sound pissed about it, I probably am!

But being hostile and aggressive is not likely to result in a favourable resolution.

Working for a diabetes organisation puts me in a unique position. As part of my work, I get to attend the very conferences from which other PWD are excluded. Plus I am frequently invited to speak and this privilege is due to a combination of my diabetes org work and also my work as a blogger and diabetes activist that I do outside of paid employment. It’s a sticky situation that I manage as best as possible. There are disclaimers everywhere and even the whiff of a conflict of interest is declared.

However, there is one thing that I have learnt from ‘being on the inside’ and that is working collaboratively is highly likely to produce results more than being combative. There is a lot of negotiating required at times and an understanding that things take time. Sometimes lots of it. It’s taken me a lot of time to understand that!

Call me – and those who are trying for a more collaborative approach – political or bureaucrats. You can think we’re sell-outs. We’re not. At all. We actually have a seat at the table and are working for people with diabetes. And you want us sitting at that table! Come join us.

So, think you want to get involved, but not sure how? There are myriad ways that you can try to work with organisations. If paid employment is not what you are looking for, there are many volunteering opportunities including Boards (some may be paid positions), advisory panels, expert reference groups or simply, pick up the phone and pitch your idea!

The Monday after National Diabetes Week is a chance to take stock, take a deep breath and take a moment to look back over the busy days.

This year’s campaign was terrific in that the messaging was strong and it got a lot of attention. It was great to see the same information being rolled out across the country, and shared internationally, too. I certainly believe the campaign’s main theme of needing to detect and treat all types of diabetes sooner resonated with people across the globe.

So, there are some of my highlights from last week:

Frank Sita can certainly claim best on ground for his relentless support of the campaign. He blogged, vlogged and SoMe’d the hell out of the campaign and was also interviewed in a great piece for The West Australian newspaper. (Plus, he nailed the #LanguageMatters talk with the journalist.) Nice work, Frank!

Diabetes NSW & ACT held their Diabetes Australia Research Program Awards on Thursday night, using NDW as an opportunity to underline the importance of research, and recognise just some of the wonderful researchers working to unwrap the secrets of diabetes.

There are far too many stories of missed type 1 diabetes diagnosis, and many were featured last week. You can see these stories on the Diabetes Australia Facebook page. It’s simply not good enough that people have to become really, really sick before they are correctly diagnosed. Everyone must know the 4Ts.

 

There was a most welcome announcement with Health Minister Greg Hunt launching Australia’s first national diabetes eye screening program to reduce vision loss and blindness in people with diabetes. this is a great example of Government, and industry (Specsavers will also be contributing to the program) working together and with health groups to support people with diabetes.

Bill Shorten’s Friday evening call to the Government to broaden CGM funding was beautifully timed and was a great way to end the week, providing an awesome bookmark to the previous week’s piece on The Project.

 

Theresa May would have no idea that she provided an outstanding opportunity for us to get in a little #NDW2018 last-minute advocacy and awareness across the national press, just by wearing her Libre sensor.

And so, it’s a wrap. Except, of course it isn’t. We still need to remind people of the signs and symptoms of diabetes. We need better detection programs. We need more awareness. This campaign doesn’t get boxed up and archived, never to be thought of again. We must keep talking about it.

Of course, National Diabetes Week may be over, but for those of us living with it, every week is diabetes week. And so on we go: ‘doing’, ‘living’ and ‘being’ diabetes.

Without fail, the first thing I put into my schedule when I am attending either ADA or EASD is the update from Life for a Child (LFAC). It’s usually held on the first day of the conference, bright and early in the morning and, for me, it sets the scene for the conference. It anchors me, so that throughout the remainder of the meeting, while I am wandering around a fancy exhibition hall, or listening to talks about the latest in technology (usually what I am drawn to), I must never forget that for some, access to insulin, diabetes supplies, education and support is incredibly difficult.

At ADA this year, there was no update session. Instead, the LFAC team gathered some of the advocates who were there so we could meet to discuss how we could continue to work together, through initiatives such as Spare a Rose, to raise funds for, and awareness of, the program.

L-R Dr Graham Ogle (General Manager LFAC), Grumps, Emma Klatman (Health System Reform Specialist LFAC), me, Angie Middlehurst (Deputy Manager & Education Director LFAC) and Manny Hernandez.

When I am writing and talking about LFAC, I usually do it in the context of asking – urging – people to consider making a donation. Around Valentine’s Day, the one rose = one month of insulin equation is repeated over and over again to highlight just how little it takes to make a difference to a young person with diabetes in a developing country.

But I’m not sure that everyone knows just how far reaching and important the work carried out by LFAC actually is, or how donations are used. Recently, they released their annual report, highlighting just some of their successes, and I thought I’d share some of them here.

To start with, last year LFAC helped over 18,500 young people from 40 countries.

Support offered by LFAC goes beyond just providing life-saving insulin for young people with type 1 diabetes. Other diabetes consumables, such as syringes and blood glucose monitoring kit is available. A1c checks are provided, providing baselines and ongoing data for centres in developing countries. Services such as education, workshop and resources are developed, translated and distributed, and support for healthcare professionals is offered.

In Haiti last year, 51 children attended a camp for children with diabetes – the first of its kind ever held in that country. (As someone who frequently speaks about the benefit of peer support, I know how amazing this would have been for the children who attended. Meeting other kids who instinctively ‘get it’ would be the same as the feeling I get when I meet and speak with others who are living with diabetes.)

LFAC also has an active research focus which is critically important in highlights aspects of diabetes, (including incidence, prevalence and mortality; cost of, and access to care; success of intervention and care-giving approaches; psychological impacts of diabetes), in young people in less-resourced countries. This research is vital in informing future programs, activities and services. LFAC research can be accessed here.

Life for a Child does all this and more, working towards their vision of a world where no child should die of diabetes. The fact that this should be their (or any organisation’s) vision – 97 years after the discovery of insulin – is heartbreaking.

Being a part of the extended Life for a Child family is one of the most important things in which I am involved. Writing blog posts and talking about the program sometimes seems like such a small thing to do, but I am committed to raising awareness of the issues faced by the young people the program helps, and raising funds so they can do more.

I have only touched on their important work, and despite the great achievements I’ve mentioned here and the number of young people benefiting from the program, there is still a waiting list for support.

Go here for details of how you can make a donation. Please. 

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