Diabetogenic

Highlights from #ATTD2018

February 19, 2018 in Awareness, Conferences, Devices, Diabetes, Engagement, HbA1c, Health, technology, Travel | 2 comments

Three days in Vienna is never going to be enough, and neither were three days at ATTD. But mother guilt is a very strong motivator for getting back home as quickly as possible.

This is the second ATTD conference I attended. Last year, I returned a little bewildered because it was such a different diabetes conference to what I was used to. But this year, knowing what to expect, I was ready and hit the ground running.

There will be more to come – this is the initial brain dump! But come back from more in coming weeks. Also, if you emailed me, shot me a text, Facebooked me, Tweeted me or sent me a owl last week, I’ll get back to you soon. I promise. Long days, and long nights made me a little inaccessible last week, but the 3am wake up thanks to jet lag is certainly helping me catch up!

So, some standouts for me:

DIY

The conversation shift in 12 months around DIY systems was significant. While last year it was mentioned occasionally, 2018 could have been called the ATTD of DIY APS! Which means that clearly, HCPs cannot afford to think about DIY systems as simply a fringe idea being considered by only a few.

And if anyone thinks the whole DIY thing is a passing phase and will soon go away, the announcement from Roche that they would support JDRF’s call for open protocols should set in stone that it’s not. DANA has already made this call. And smaller pump developers such as Ypsomed are making noises about doing the same. So surely, this begs to the question: Medtronic, as market leaders, where are you in this?

It was fantastic to see true patient-led innovation so firmly planted on the program over and over and over again at ATTD. After my talk at ADATS last year – and the way it was received – it’s clear that it’s time for Australian HCPs to step up and start to speak about this sensibly instead of with fear.

Nasal glucagon

Possibly one of the most brilliant things I attended was a talk about nasal glucagon, and if diabetes was a game, this would be a game changer! Alas, diabetes is not a game, but nasal glucagon is going to be huge. And long overdue.

Some things to consider here: Current glucagon ‘rescue therapy’ involves 8 steps before deliver. Not only that, but there are a lot of limitations to injectable glucagon.

Nasal glucagon takes about 30 seconds to deliver and is far easier to administer and most hypos resolved within 30 minutes of administration. There have been pivotal and real world studies and both show similar results and safety. Watch this space!

Time in Range

Another significant shift in focus is the move towards time in range as a measure of glucose management rather than just A1c. Alleluia that this is being acknowledged more and more as a useful tool, and the limitations of A1c recognised. Of course, increasing CGM availability is critical if more people are going to be able to tap into this data – this was certainly conceded as an issue.

I think that it’s really important to credit the diaTribe team for continuing to push the TIR agenda. Well done, folks!

BITS AND PIECES

MedAngel again reminded us how their simple sensor product really should become a part of everyone’s kit if they take insulin. This little slide shows the invisible problem within our invisible illness

Affordability was not left out of the discussion and thank goodness because as we were sitting there hearing about the absolute latest and greatest tech advantages, we must never forget that there are still people not able to afford the basics to keep them alive. This was a real challenge for me at ATTD last year, and as technologies become better and better that gap between those able to access emerging technology and those unable to afford insulin seems to widening. We cannot allow that to happen.

Hello T-Slim! The rumours are true – Tandem is heading outside the US with official announcements at ATTD that they will be supplying to Scandinavia and Italy in coming months. There are very, very, very loud rumours about an Australian launch soon but as my source on this is unofficial, best not to add to the conjecture.

How’s this for a soundbite:

GOLD STARS GO TO….

Massive congrats to the ATTD team on their outstanding SoMe engagement throughout the conference. Not a single ‘No cameras’ sign to be seen, instead attendees were encouraged to share information in every space at the meeting.

Aaron Kowalski from JDRF gave an inspired and inspiring talk in the Access to Novel Technologies session where he focused on the significant role PWD have in increasing access to new treatments and his absolute focus on the person with diabetes had me fist pumping with glee!

Ascensia Diabetes packed away The Grumpy Pumper into their conference bag and sent him into the conference to write and share what he learnt. Great to see another group stepping into this space and providing the means for an advocate and writer to attend the meetings and report back. You can read Grumps’ stream of consciousness here.

Dr Pratik Choudhary from the UK was my favourite HCP at ATTD with this little gem of #LangaugeMatters. Nice work, Pratik!

ANY DISAPPOINTMENTS?

Well, yes. I am still disappointed that there were no PWD speaking as PWD on the program. This is a continued source of frustration for me, especially in sessions that claim to be about ‘patient empowerment’. Also, considering that there was so much talk about ‘patient-led innovation’, it may be useful to have some of those ‘patient leaders’ on the stage talking about their motivations for the whole #WeAreNotWaiting business and where we feel we’re being let down.

I will not stop saying #NothingAboutUsWithoutUs until I feel that we are well and truly part of the planning, coordination and delivery of conferences about the health condition that affects us far more personally that any HCP, industry rep or other organisation.

DISCLOSURE

Roche Diabetes Care (Global) covered my travel and accommodation costs to attend their #DiabetesMeetup Blogger event at #ATTD2018 (more to come on that). They also assisted with providing me press registration to attend all areas of ATTD2018. As always, my agreement to attend their blogger day does not include any commitment from me, or expectation from them, to write about them, the event or their products. It is, however, worth noting that they are doing a stellar job engaging with people with diabetes, and you bet I want to say thank you to them and acknowledge them for doing so in such a meaningful way.

Tobacco is not food

February 8, 2018 in Awareness | 10 comments

This morning, I saw news that President of the Australian Medical Association, Michael Gannon, wants a shock campaign, similar to our hugely successful QUIT (anti-smoking) campaign, to address growing obesity rates, and increase understanding of the ‘frightening end-stage health results of obesity-related type 2 diabetes such as limb amputation, blindness, stroke, heart and kidney failure.’ (The Courier Mail article where this quote is from can be found beyond a paywall here. Some details also freely available here.)

That quote alone would have put me off my breakfast if I was the breakfast eating type. Alas, I am not. Which is good, because there was more…

In an accompanying editorial (also behind a paywall), there was the brilliant idea that ‘…there is room for some shock and awe education…child-friendly information that is both understandable and impactful when it comes to the consequence of living with type 2 diabetes’. The editorial again made the flawed connection between this idea and the success of anti-smoking campaigns.

We can point to the triumph of the QUIT campaign – and should do so as it has been an extraordinarily successful – and long term – initiative. But if anyone believes the success of QUIT came from some shock advertisements on TV, they are so wrong. This campaign has always been a multi-pronged approach: advertising, legislation, taxes, education and – most importantly – funding, and that is why it’s been so successful.

Alongside the high-rotation television, radio and print media commercials (and in more recent times, online ads), there was legislation. Cigarette advertising was banned. As a kid, I remember Summer being brought to us by Benson and Hedges. As we watched the Aussies playing the West Indies in the cricket (seriously, you want me on your trivia team if the questions are about the 1980s West Indian cricket team. I still have a crush on wicket keeper Jeffrey Dujon) it was advertisement after advertisement of cigarettes. The fence around the MCG was adorned with golden B&H logos.

And then, that stopped. Tobacco advertising on television and radio was prohibited as was all print advertising. No longer could cigarette companies hire billboards to spruik their products. Today, cigarettes sold in stores must be hidden away in a cupboard without any advertising at all.

And new and steep taxes were introduced, increasing the cost of cigarettes more and more and more each year.

Smoking became illegal in more and more places: firstly there was no smoking in restaurants and cafes, then pubs. Most recently, smoking has been banned anywhere that food is served, meaning that the last place to have a smoke while eating (outside seating at a café or in an open beer garden) is now not an option either.

There were education programs funded to provide information about the dangers of smoking.

But smoking is not obesity. Tobacco is not food. We can’t use the same approach as the ‘every cigarette is doing you harm’ idea (used recently as part of QUIT). Food is much more nuanced. It’s fine to eat so-called ‘junk food’ occasionally. While there is no safe level of smoking, there is a safe level of eating a little bit of everything!

The idea that some scary advertisements on prime time will in any way solve the issue of obesity is ridiculous. Will these advertisements be shown alongside those for Macdonald’s latest burger, or a new sugary breakfast cereal? Will telling kids the dangers of being overweight and eating ‘bad’ foods happen before or after their Milo– or KFC–sponsored sporting activities?

If we are seriously going to address the obesity issue, we need to get serious with all aspects required for significant change. We need advertising controls, we need (sugar) taxes, we need proper, funded education programs.

And we need to get the messaging right. I was so disappointed to see Michael Gannon single out type 2 diabetes in today’s news. When we talk about the consequences of obesity, we need to stop being so selective about what we connect it to.

Obesity may be a risk factor for type 2 diabetes, but it is also a risk factor for other conditions, including some cancers and cardiovascular disease. And yet we would never, ever blame someone for developing breast or bowel cancer – a diagnosis of which obesity may or may not have contributed to. It is too easy – and lazy – to single out type 2 diabetes.

I don’t for a moment think that we should bury our head in the sand and do nothing about the obesity situation in Australia. But we need to do it properly, we need to do it collaboratively, we need to do it honestly, and we need to do it sensitively.

The #SpareARose challenge

February 6, 2018 in Advocacy, Awareness, Diabetes, DOC | Leave a comment

Here I am speaking too fast, hands waving erratically (#TooMuchCoffee), with an idea about how we can get Spare a Rose, Save a Child better known outside the diabetes community…

Click image to donate

Kindness in care

February 5, 2018 in Communication, Diabetes, Engagement, Healthcare team, Language, Real life | 3 comments

It’s easy to remember the difficult moments we’ve experienced at the hands of healthcare professionals who have been less than kind.

And, equally, we remember those moments where kindness was shown in spades.

I know I certainly remember moments of kindness in healthcare. And those moments transformed me. I so appreciated the kindness that came from HCPs at moments when a tsunami of grief or despair or pain or a diagnosis washed over me, knocked me to the ground and left me doubtful that I would ever be able to get back up again.

I remember kind words, the silences afforded to me giving me a moment or two (or dozens) to think, the time I was given to understand what was happening and formulate a plan to manage… I remember them all because they left me stronger, more determined, better supported and far more empowered to cope.

Kindness is a highly underrated quality in healthcare. I’m not sure how it should be included in a curriculum full of critically essential information, but it needs to be taught from the very beginning of any healthcare courses, and it’s importance highlighted and stated over and over and over again.

In the last year or so, I’ve read a few books written by (as the publicity often claims) ‘healthcare professionals turned patients’. (I’ve found this to be quite an odd term, because surely everyone at one point or another has been a patient.)

A recurring theme throughout the books is how difficult the HCPs have found it being on the other side of the HCP / patient divide. They often appear astounded at the red tape and bureaucracy they came up against, the hoops they need to jump through to receive the appropriate care, and the sheer unfriendliness of the system. And they write about the extraordinary moments of kindness that often feel far too infrequent.

Sometimes, they have written about how they didn’t realise that the way they themselves behaved could be interpreted as having a lack of consideration and kindness – explaining it was simply their manner and how they made sure they got through the day as efficiently as possible in a system often built on the foundation of complete and utter inefficiency. And yet now…now they understood.

While the books I read have been beautifully written, heart breaking at times, and often end terribly, the stories in them were not surprising. They tell truths about the system – and the lack of kindness – that people with diabetes face every day in every encounter.

When Kate Grainger launched #HelloMyNameIs, she was echoing the calls of countless people before her: please treat us like people. Please tell us what you are doing here. Please know we are scared. Please tell us who you are and what your role in my care will be.

She did it beautifully, simply, eloquently and changed the landscape of healthcare communication. I am so sad that she had to be so ill for this to happen. But her legacy is one for which I am so grateful.

Kindness in healthcare makes all the difference. Some may think it is completely unnecessary and that as long as we are receiving the right diagnosis, good care and excellent treatment, there is nothing more we need. But that is not true. Kindness adds a human element. We need warm hands, warm hearts and warm words alongside the cool tech, sterile environments and scary diagnoses.

Kindness takes no more time; it takes no more effort. But it’s effects can indeed be monumental.

Moving through…not on

February 2, 2018 in Diabetes, Real life | 3 comments

Recently, I spoke with someone who had been diagnosed with type 1 diabetes about twelve months ago. A mutual friend had connected us.

‘How long have you had diabetes?’ That was her first question.

‘Almost 20 years,’ I said.

‘I’m really struggling. Will I move on and get over it?’

I wish I had been able to say something to ease her anxiety. Instead I just nodded and told her she would be okay.

But I haven’t been able to stop thinking about that question.

Because, the truth is, I don’t think we do move on. I don’t think we do get over it. We move through it. We learn to get through it, but it’s a chronic health condition and it never, ever goes away.

I went through some tough times a few years ago and I remember a conversation with a friend who was a great source of comfort to me. ‘When does this awfulness stop? When does it go away?’ I asked, tearily, one day.

‘It doesn’t, but it will get easier. Think of it like this… You’re in your car and you’ve just driven past a horrific car accident. You can’t stop, you have to keep driving, but you are driving very, very slowly because there is a lot of traffic backed up. You’re shocked and can’t believe what you have just seen. It’s gruesome. You look in the rear view mirror and you can still see it – all the details, all the goriness, all the pain.

You can’t help but keep checking the mirror. Every time you do, you feel the horror of what you saw, but the accident is a little further away in the mirror’s reflection, so the detail of what you are seeing is a little less.

After a while, all you can see are some flashing lights and a crumpled mess, but no details – it’s starting to be a blur and the shock and pain you felt is starting to numb.

And then, eventually, after a long time, you look back and you see nothing. You’re on the open road, going about your driving, and all you see behind you is road and other cars. But you still think about what you saw. You still have flashes of it. You still remember it.

It doesn’t go away – you don’t get over it. But you got through it. And your life will be forever changed by it. But it will always be there.’

I remember being incredibly reassured by this analogy. And it was actually so true. The pain I felt did wane – I never forgot it and I’m not ‘over’ it. But it is far more distant in my rear view mirror now and eventually, it may completely disappear from view. But it is still part of my memory bank.

I’d never applied this way of thinking to diabetes – that analogy belonged to a time of incredible and quite acute emotional pain – but it actually is perfect for diabetes too.

I wish my response to my new friend’s question was simply: ‘I don’t think that I have moved on from diabetes; I don’t think I am over it. But it is easier today than it was twenty years ago. And every day I move through it, and I get through it. I hope that gives you some comfort.’

I look at those who have gone before me and those who are living a diabetes life alongside me and I see us all moving through it. Some days are harder, some days are easier. But we keep moving. We move through diabetes. As best we can.

Spare a Rose – kickoff

February 1, 2018 in Advocacy, Awareness, Diabetes, DOC | Leave a comment

It’s that time again. Supermarkets are covered in red heart-shaped foil balloons, fluffy heart-shaped pillows and velvet heart-shaped boxes of chocolates. Florists are about to hike up the price of roses by three or four hundred percent. And the sex shop in my neighbourhood has an odd display of edible underwear in the front window, surely begging the question: who the hell actually thinks that is a good idea as a gift for any occasion? Anyway, I digress..

It must be Valentine’s Day.

We don’t do Valentine’s Day in our place. It is a Hallmark occasion if ever there was one and quite frankly, the idea of being loving and affectionate and amorous one day a year is ridiculous and would leave me feeling very short-changed.

But despite my complete and utter aversion to organised romance, I have, for the last few years, thrown my weight behind Spare a Rose, Save a Child. And today, with two weeks until Valentine’s Day, it’s time for me to start talking about it again…A reminder of how the whole Spare a Rose thing works:

Instead of giving your Valentine twelve (overpriced) roses, give them 11, saving yourself about AUD$6. Donate that six bucks you’ve saved to Spare a Rose.

All funds raised by Spare a Rose go directly to the Life for a Child program which provides insulin and diabetes supplies for kids in need and your six dollar donation is enough to provide a month’s worth of insulin to a kid who might otherwise not have any.

It’s pretty easy and you don’t need to be good at maths to work out how much to donate to actually make a difference.

Of course you can give more – you can forgo the flower thing altogether, donating the cost of the whole dozen (meaning you’ve just provided a full year’s worth of insulin for a child). Aaron knows my favourite sort of vase on Valentine’s Day is an empty one, with the cost of the whole bunch going to Spare a Rose.

You know, here in Australia it the most it will cost to buy insulin is $39.50. If you have a healthcare card it’s $6.40. We really are so fortunate that the vast majority of Aussies don’t have to worry about insulin prices increasing at terrifying rates or insulin not actually getting into the country. I don’t for a moment think our healthcare system is perfect.

But it is a far cry from places where children and adults are dying because they cannot access insulin. That is the reality for a lot of people, and we can do something about it.

Six dollars. That’s all it takes. And it is as easy as clicking here. Please donate.

DISCLOSURE

Spare a Rose Save a Child is an initiative of a few well known advocates from the DOC in the US. In the last couple of years, they’ve invited me and advocates from the UK to be involve in the campaign. (Obviously, I receive no funding to work on this, and am doing it because I believe in it.)

Internet jumble #28

January 31, 2018 in Communication, Complications, Conferences, Diabetes, Engagement, Health, Healthcare team, Interweb Jumble, Peer support, Real life, Social media, Wellbeing | Leave a comment

New year, new jumble. And lots of saved links from the last few weeks to share.

#OzDOC 2.0

Did you know that after OzDOC had it’s ‘final’ tweetchat at the beginning of December last year, it’s had a reboot and is now continuing to go at a great rate. David Burren (AKA Bionic Wookiee) kicked off the chat but is looking for people to volunteer to the moderators’ roster. There’s a brand new Twitter account to follow (@OzDOC_host), but the #OzDOC hashtag continues to shine brightly.

Same #OzDOC time, same #OzDOC channel. (i.e. Tuesdays at 8.30pm AEDT)

And while we’re talking tweetchats…

…make sure you keep an eye out on the #GBDOC tweetchats, which also had a bit of a restart last year and are going absolutely brilliantly. Follow @GbdocTChost for topics and moderators.

Now is a great time for Aussies to participate in #GBDOC because with the time zone difference, the chat is on Thursday 8am AEDT…which is actually quite pleasant. (It all goes to pot and becomes more difficult when daylight saving kicks in/out in respective hemispheres in coming months, but for now, it’s certainly manageable!)

Jane’s profile

It’s no secret that I’m a huge fan of Professor Jane Speight and I make no apologies for mentioning her so frequently on this blog. She is truly a champion for and of people with diabetes and her pioneering work on diabetes and #LanguageMatters, and social stigma are changing the landscape for those of us living with diabetes.

Last week, a profile of Jane and her work was published in The Lancet. Congrats, Jane. I can’t imagine a more worthy recipient of this attention. Please keep on keeping on. I for one am very grateful to have you on our side!

Read the article here – it’s free, but you will need to register/log in to access it.

(Click photo for source)

Dear ‘patient’

I was really interested to read this BMJ Opinion piece about medical letters, with the writers suggesting that instead of addressing ‘report letters’ to referring (and other) doctors and HCPs, that they should be addressed directly to the person, CCing in the doctor who would ordinarily have been sent the letter.

I love that idea! My endo generally copies me in on anything she sends out to my other HCPs to keep me in the loop, but I think that actually writing directly to me is even better.

HCPs would need to completely reconsider the language they adopt, the terminology they use and the overall tone of the communication, and I believe that there is nothing that should be shared with another HCP about me that shouldn’t be shared directly with me.

Interesting idea. And interesting to see if it has legs…

Writing for Grumps

After writing for me a few weeks ago, I returned the favour and wrote a post for The Grumpy Pumper. (I think the deal he made was something like ‘I’ll show you mine if you show me yours’, so I had to come up with the goods.)

This is all part of Grumps’ attempts to get people with diabetes speaking about #TalkAboutComplications in an open and honest way to help reduce the shame that seem to go hand in hand with a complications diagnosis.

Get ready for Spare a Rose spam

This year’s campaign is about to kick off. And if you want to know why I support this campaign, here’s just one reason.

Hospital admissions and T1D study

Rebecca Munt from Flinders University is currently enrolled in a PhD at Flinders University and is looking for participants in her research.

The focus of her study is to explore the experiences of self-management for adults with type 1 diabetes in the hospital setting (when T1D is not the primary admission diagnosis). If you’re interested in participating in Rebecca’s study, have type 1 diabetes, are over 18 years of age and have been admitted to hospital within the last two to five years (not for diabetes), please call Rebecca on (08) 8201 5749 or email rebecca.munt@flinders.edu.au

(The project has Social Behavioural Research Ethics Committee approval from Flinders University.)

Future of medical conferences

I have been very vocal in recent years about the shortcomings of diabetes conferences, specifically the lack of involvement and engagement of people with diabetes as part of the planning, running and presenting of the conference. So this piece really resonated about why medical meetings need a revamp, and some ideas for what could be done differently.

(Click for original tweet)

Because #NothingAboutUsWithoutUs.

Does the story we know and love about Banting need a rewrite?

I was fascinated to watch the short documentary shared in this story which suggests that the frequently-told story of the discovery of insulin is missing out a critical part.

It was the best of times, it was the worst of times…

This blog post by Sue Robins detailing two vastly different medical appointments is compelling – and quite heartbreaking –reading.

More D Merch

Totally true!

Click image to get your own!

Finding the light

January 30, 2018 in Communication, Diabetes, Real life, Wellbeing | 6 comments

It’s not really a great day in diabetes with news all over my SoMe feeds about a study published in Diabetologia which links high glucose levels with dementia, and a report from the Baker Heart and Diabetes Institute showing Aussies with type 2 diabetes are twice as likely to suffer sudden cardiac death.

Perspective is really important on days like today. I’m not in any way wanting to minimise the significance of the these reports – obviously we should take them seriously. But equally, I think we also need to find some positives in the diabetes space and remember that it is not all dire and critical.

Diabetes is serious and anyone who thinks otherwise doesn’t know diabetes. This weekend, a true giant in Australian diabetes died. Hal Breidahl was a pioneer who co-founded the Australian Diabetes Society. In a piece he wrote back in 1980 (and the language reflects that it was written in 1980!!!) about what people with diabetes want to know he states:

All diabetes is severe – unless adequately controlled. Patients often want to know ‘how bad is my diabetes?’ or ‘how severe is the condition?’ or ‘how high is the blood sugar?’ The notion that ‘I’ve only got a touch of sugar’ or ‘I only have mild diabetes’ should not be allowed to remain…

We get it. Diabetes is serious. Nasty things happen. We know it.

But I want to add to this. There is – there has to be – more to diabetes than the negative stories that make the news. Because in amongst those stories there are these things to remember, and I seek them out each day:

Diabetes is serious, but it is also the condition I need to live with and find some semblance of balance as I work out how to fit it into my life.
I need more than just the negatives, or bad news highlights. Because not offering the things I can do to live as best I can does nothing for my mental health – or for my diabetes health.
Attention grabbing headlines that only tell part of the story do nothing to make me believe that I will be able to live well with diabetes. Also, ‘live well’ means different things to different people and it’s a moveable feast, but I know that the idea that we need to be complications-free to be living well is a flawed and dangerous idea.
There is a lot of positive research about diabetes and we need to know about that too. Like this which reports people with type 1 diabetes are living longer.
There is an undeniable truth that reading over and over and over again that diabetes is going to increase my risk of <insert whatever you bloody well feel like> is exhausting. I feel as though I have been kicked in the gut every time it happens even though I know that I am living the best diabetes life I possibly can.
While diabetes may increase the risk of all sorts of things, sometimes it just doesn’t, because sometimes it’s not diabetes. If others could remember that, it would be useful so that any other affliction isn’t automatically lumped in the ‘It’s because you have diabetes’ basket, and not investigated properly.
If you are talking about the nasty things that diabetes seems to increase the risk of, please acknowledge that the tools we have to live with this condition are not up to the task. Any failure is not mine as a person with diabetes. It is the failure of a body part that decided to not to what it is supposed to. It is a failure of the insulins currently available not being able to act fast enough. It is a failure of monitors not being accurate enough and delivery devices not delivering properly. Please remind people of that when you also mention that out of range glucose levels (AKA diabetes) means that we’re at a higher risk of not-so-great things.
The bad stuff? It may not happen.

On a day like today when I am reading a lot about the diabetes things I really don’t want to think about, it is especially important for me to find some of that balance and search out the good news. Because otherwise diabetes tips into a really dark place where good self-care becomes almost impossible. There is light in diabetes. And sometimes, we need some help finding it. Sometimes we need to search a little harder to see it. Today is one of those days.

Georgie at #IDF2017

January 25, 2018 in Awareness, Diabetes, Health, Mental health, Real life, Stigma | Leave a comment

There were some really important and impactful sessions in the Living with Diabetes stream at #IDF2017 in December last year, but perhaps one of the most significant was the final session. Chaired by Professor Jane Speight, the session was titled ‘Diabetes and mental health: distress, diabulimia and emotional wellbeing’.

Talk about finishing with something to get people thinking and talking!

Bill Polonsky kicked off the session with a talk about how emotional wellbeing is affected by diabetes, and offered some ideas for addressing these issues.

(Can I just say what a stroke of genius it was to have Jane Speight and Bill Polonsky on stage together?! To have two champions of diabetes behavioural psychology in one place was definitely a highpoint of the Congress, and anyone who chose to go to a different session missed out. Big time! … Credit where credit is due to us all, Manny, Mary, Hakeem and Kelly!)

The session ended with Erika Backhoff from Mexico who gave an outstanding presentation on diabetes distress and the importance of appropriate training and understanding of the difference between diabetes-related distress and depression.

But for me, the highlight of the session – and one of the highlights of the entire stream – was Georgie Peters speaking about diabetes-related eating disorders. (Georgie writes a great blog that you can read here.)

Georgie began by sharing her own story of insulin manipulation. I’m not going to write anything about this part of Georgie’s talk, because you can see and hear it all here. (You’ll need to have a Facebook account to view it.)

Often, when people speak about living with a health condition, they are called ‘brave’. I absolutely hate it when people refer to me as brave because I live with diabetes (and all that comes with it). I’m not brave, I’m just doing what I need to do to stay alive.

But Georgie WAS brave and I’ll explain why.

Often, when we hear from people living with diabetes, what we hear about is people conquering mountains (literally and figuratively). We hear tales of the super heroes running marathons and winning medals. These are the socially acceptable stories of living with a chronic health condition: the ‘I won’t be beaten’ anecdotes. They give hope, are meant to inspire and make those not living with diabetes feel better about things because suddenly, it seems that this health condition is manageable and everyone with it is a champion.

But the reality for most people with diabetes is the same as most people with diabetes – we don’t run marathons, we don’t climb mountains, we don’t win gold medals. We are just doing the best we can with the hand we’ve been dealt. And sometimes, we deal with difficult stuff.

Sharing stories of the tough times and the challenging things that often go hand in hand with diabetes is not always easy – for the person sharing the story or for those reading or listening to them

But perhaps that’s exactly why we do need to hear about these stories, and ensure stories like Georgie’s are heard and given a platform.

Just because something is difficult or uncomfortable to listen to doesn’t mean that it should be hidden. This is why people don’t seek the care and assistance they need. It’s why people think they are the only one’s struggling and why they don’t know where to turn.

I could see some people in the audience shifting uncomfortably in their seats as Georgie eloquently, determinedly – and completely unapologetically – shared her experience and, most usefully, offered suggestions for how to work with people with diabetes and eating disorders. I know that I left with a far better understanding of the topic. And an even more resolute desire to keep these types of issues in the public domain.

Disclosure

I was the Deputy Lead for the Living with Diabetes Stream, and an invited speaker at the 2017 IDF Congress. The International Diabetes Federation covered my travel and accommodation costs and provided me with registration to attend the Congress.

Georgie owning the stage at #IDF2017

Resolve

January 23, 2018 in Awareness, Diabetes, Engagement, Health, Healthcare team | 5 comments

As explained previously, I don’t do new year’s resolutions for the simple reason that I never stick to them. I’m unable to do the whole SMART thing and make my goals actually attainable, and so after the shortest time (a day… an hour… minutes), have thrown in the towel.

However, I am not above making resolutions for others. Because that’s the sort of person I am. Caring and sharing. Or bossy. You decide.

Here are some New Year’s resolutions for HCPs working with people with diabetes to consider:

Use language that doesn’t stigmatise – both in front of PWD and away from us.
And while we’re talking words: use words we understand. We may know a lot about our health condition, but we don’t necessarily understand all the medical speak. If you are talking to us, check in to make sure we actually understand what you are saying to us.
Lose the judgement. We all judge; we do it subconsciously. Try not to.
Remember who is in charge. While as a HCP you may have a direction that you would like us to take, or our consultations to follow, that might not work for the person with diabetes. Our diabetes; Our rules. Learn the rules and stick to them. (Also, there are not really any rules, so don’t get shitty when we seem to have no idea what we’re doing.)
Remember this: no one wants to be unhealthy. Or rather, everyone wants to be the healthiest and best they can be. Use this as an underlying principle when meeting people with diabetes.
Sure, offer help with setting goals. We all like to work towards something. But setting the goal is actually the easy part. Help us work out the steps to get there. If someone comes to you and wants to lose weight or reduce their A1c, that’s awesome, but they are big asks. So, tiny steps, easily achievable mini-goals and rewards for getting there.
Acknowledge and celebrate victories. You know that person with diabetes sitting opposite you? For some, just getting there and being there is a huge achievement. Recognise that. Showing up with some data – in whatever format? That’s brilliant – so say so. Sure, it may only be three BGL readings from three different meters and all at different times, but that is a start.
Diabetes is rarely going to be the most important thing in someone’s life. Please don’t ever expect it to be.
Include us in every discussion about us – from letters to referring doctors or others in our healthcare team and when it comes to any results of bloody checks or scans. Make sure we have copies of these and understand what they all mean.
Please be realistic. If someone is currently not checking their glucose levels, don’t ask them to suddenly do six checks a day, analyse the data and send you pretty graphs. Small, attainable, reasonable goals. (Once, during a period of particularly brutal burnout when my meter was not seeing the light of day, my endo asked me to do two checks a week: Monday morning before breakfast and Wednesday morning before breakfast. That was it. Next time I went back to see them, I’d not missed a single one of those checks. And even managed to do a few others as well. I felt amazingly good for actually having managed to do what was suggested and eager to keep going from there.)
Ask us if we want to be pushed a little. Are we interested in new technologies to try, different meds to consider, a more aggressive treatment plan? Don’t assume you know the answer. Present us with the options and then help us decide if it’s something we want to try.
Equally, if we’re pushing you because we want something new or more intensive, help us get it, learn about it and support our decision to try it.
Do not dismiss peer networks and peer support. Offer it, direct us to it, encourage us to find it.
Be on our side. We need champions, not critics. We need people to cheer us on from the sidelines, go into bat for us when we need an advocate and take over the baton when we’ve done all we can (and shit yeah! – that’s three sports analogies in one dot point – I deserve a gold medal!)
Understand that diabetes does not start and end with our glucose levels. There is so much going on in our head and sometimes we need to be able to get that sorted before we can even begin to think about anything else. Get to know some diabetes-friendly psychologists, social workers and counsellors, and suggest we see them.
Please, please, please, when it is time for our appointment, do nothing but be there with us. Of course interruptions may happen, but do apologise and excuse yourself – and do everything possible to minimise them. Look at us, take notes on a piece of paper – not a computer, and listen to us.
Again…listen to us.
Explain to us why you feel we need to have something done. It could be as simple as asking us to step on the scales (which often is actually not simple, but fraught) or it could be asking us to have a scary-sounding and invasive procedure. Why are you suggesting this? Is this the only course of action?
Treat us like a person, not our faulty body part. And see all of us – not just our missing islet cells. Because really, if all you are seeing is those missing islet cells, you really are not seeing anything at all.