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I have spent a lot of time listening to presentations about diabetes. It’s one of the perks of the job – hearing from leading clinicians, researchers and advocates is a privilege I never take for granted.

Often, I am mesmerised as the speaker holds court, sharing details of a new study, intervention, clinical program or anything else that they are working on.

Usually, I sit there interested, listening to what is being said, live tweeting content and wondering what this means for the average diabetes punter in their day-to-day diabetes life. Occasionally I am completely and utterly blown away by something – even if it just a small comment in the overall talk – and that is what happened last Monday.

I had been asked to sit on a panel at the Roche Media event, which is a morning for health journalists. The program was jam-packed and the panel session tied together the presentations from earlier in the day. I was coming from another meeting, so unfortunately, I wasn’t there for the whole morning, but I arrived just in time to hear Professor Stephan Jacob, a diabetologist from Germany.

The theme for the whole day was ‘Connecting the Dots’, with Roche continuing to promote their development of a connected eco-system with PWD in the centre, linked with HCPs, health systems, policy makers, industry, data and more.

I have become pretty good at getting a read on the way HCP and researcher presenters regard PWD. A lot of this is in the language they use (i.e. use the word non-compliant, and it’s not looking good…). Immediately, it was clear from the way Stephan was speaking that he understood the whole self-management nature of diabetes, the burden that a chronic and demanding condition such as diabetes places on the lives of those living with it and those around us, and who is responsible for the day-to-day management of diabetes. It was also clear that he understood the barriers that we face to optimising our own care.

The moment in his talk last week that had lightbulbs going off in every direction was when he made a comment about diabetes messaging, which went something like this:

‘If someone comes into a clinician’s office and has elevated blood pressure, we take note straight away. We consider the right medication and what needs to be done, and then we usually see them again a week later, maybe less. But diabetes? When someone come in with out of range glucose levels, we may make a few tweaks; we may tell them to go for a walk after dinner; we may change some of their medications. And then we tell them to come back in three months. Three months. What does that say about urgency or seriousness? It tells that we don’t really need to do anything urgently; that it’s not important.’

I gasped when he said this, because it is so true. There is no urgency in diabetes. People newly diagnosed with type 2 diabetes may still be told that they have just ‘a touch of sugar’, which sounds like something a recipe may suggest be sprinkled on top of a freshly baked streusel cake!

We have visits every three, six and often twelve months which may be fine if everything is ticking along nicely and we just need a tune up or to check in. But what about if it’s not?

And what happens when something does occur? When we have a hypo that sends us crashing, wind up in DKA after a day or two of elevated glucose levels, or are diagnosed with complications? We are blamed for not acting swiftly enough. But why would we?

Perhaps part of the issue is that we remain so reliant on A1c checks as a measure of how we are doing, and traditionally, we do these every 3 months. But the limitations of A1c should mean that we don’t rely on that and that alone.

I was thinking to a time where diabetes has felt truly urgent for me, and really, the only time I think it did was while I was pregnant. Sudden changes to patterns in glucose levels were addressed immediately. Instead, changes to therapy were swift and aggressive, and I understood that at that moment how I needed to be diligent about keeping an eye on things, reporting issues and expecting action. And my HCPs knew it too. I had far more regular appointments and at no point during planning for or during pregnancy was I sent away with an indecisive ‘We’ll just wait and see what happens and talk about it when you are in here at your next visit.

I also know that it was exhausting and draining and that maintaining that level of care is not sustainable in the long term. Burning out is a reality of that sort of scrutiny and constant focus.

But surely there is a middle ground in there where we all understand that while needing to live life alongside a condition and have it fit in with our daily lives, there is also no space for ambivalence or messaging that it doesn’t matter if we just trek along, happy with the status quo, for a few months.

I had a conversation with Stephan later, thanking him for his talk and telling him how that moment of his presentation really rang true. We spoke about how many people with diabetes would be feeling really unwell during periods where they were waiting for something to be done – changes to therapy made, introduction of new drugs… Were they just accepted to feel that way until they were helped to work out how to improve the situation?

Mostly, this resonated as another example of terrible messaging in diabetes; more missed opportunities to optimise care; another time that highlights how people with diabetes actual feel is ignored as we are forced to fit into a system that is not purpose-built for our condition.

Panel discussion at the Roche Diabetes Care Media event. Professor Stephan Jacob is far left. I’m the one who forgot the ‘white shirt/black jacket’ dress code. (Click for photo source.)

DISCLOSURE

Roche Diabetes Care (Global) covered my (economy) travel and accommodation costs to attend their #DiabetesMeetup Blogger event at #EASD2018 and present at their media event the day before EASD. Roche Diabetes Care also assisted with providing me press registration to attend all areas of the EASD meeting. As always, my agreement to attend their blogger day and participate in their media event does not include any commitment from me, or expectation from them, to write about the company, the events or their products. 

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Yesterday, I caught up with a friend I’ve known for a number of years. Monique and I are diabetes twins, diagnosed within days of each other twenty years ago. (She suggested that we start to plan for a joint 21st next year – an idea that I immediately jumped on and have already been searching for a DJ, light show… and potentially a booze cruise. Aren’t you glad you suggested that, Mon?)

We don’t catch up enough, but when we do, I am always in awe of her. She is one of the most dynamic women I know. Years ago, she founded and ran HypoActive – a peer group for people with type 1 diabetes. She was a member of Team Type 1 (a cycling team made up exclusively of people with type1) and competed in the winning Race Across America team.

She has held a number of board positions, and has worked tirelessly to promote women in sport.

On top of all this she is raising two daughters to be the leaders of the future (her kid dressed as Emmeline Pankhurst for book week this year!).

While our interests (obviously) may not mirror each other, I am constantly astounded by her commitment to the causes she supports, because she does so with the sort of no-nonsense, tell-it-like-it-is attitude that made her a world-class cyclist.

One of the (many) things we spoke about yesterday was parenting kids and encouraging their independence. Unsurprisingly, Monique’s girls are keen bike riders and this is their preferred mode of transport around their neighbourhood. When Mon’s older daughter started to ride to school on her own, some other local parents weren’t quite so comfortable with the display of independence and made their dissatisfaction known. (You can read Monique’s account of this experience here.)

I spoke about how my kid gets to school (less inclined to get on a bike, more inclined to get on a tram and try to not get stepped on as she has her nose in a book and ignores everyone). I mentioned how I thought that when she started at her new school I’d be driving her most days, but she decided after day one that she wanted to get on the tram with her friends, letting me know loud and clear that her independence was not to be stifled by a mum wanting company on the morning commute.

Teaching our kids independence is a double edged sword for us parents. Of course we know intrinsically that it is important; but we also want to somehow coddle them and protect them from all the real and imaginary threats that are often far larger in our own minds than in reality.

But actually, the two aren’t necessarily at odds with each other. In fact, when we teach our kids independence and allow them freedom, we are actually making great efforts to keep them safe.

It’s not always easy to join those dots, but surely if we are confident with the way that we are parenting, and trust the rules, guidelines and instructions we put in place, we should be able to see how we’ve done everything we can to keep our kids out of harm’s way.

Sure – critics of this thinking may say that it’s not our kids we should be worried about, it’s others who may do them harm. But these worries should be part of the conversations we have in our endeavours to develop their independence.

If we trust ourselves and the job we’ve done, we should feel confident to step back and trust our kids to safely take on more and more responsibility, even if letting go and relinquishing some control can be difficult.

Monique and I then spoke about these same principles in terms of diabetes (and I’m sure healthcare in general) and how some HCPs struggle with losing control of how people with diabetes manage their own diabetes.

In the same way that we need to trust and have confidence our parenting, HCPs need to trust their education efforts, feeling confident that they have set out the principles of effective diabetes management, and providing PWD with the tools to adapt those principles to suit us and our diabetes in the way that works best.

The way we seek our independence in diabetes is to take what we are taught, and adapt it to work the right way for us – even if, sometimes, that is in direct contrast to the way our HCPs have instructed.

Perhaps that’s the real foundation of the whole idea of being ‘deliberately non-compliant’ in diabetes. Sure, we are going against what we have been told and are doing diabetes in ways that our HCPs might never recommend or even understand, but if the results we see are actually as good or even better than what is expected, then those initial teachings set us on the track for success!

My deliberate non-compliance – the very thing that the HCPs at ADATs last year prickled about – has resulted in my diabetes being the most ‘compliant’ it ever has…and, (even more importantly), me feeling better about diabetes than I ever have.

I am fully aware that a big part of my ability to go off label is because I was shown and taught the principles of diabetes by some great HCPs.  To me, this is the perfect marriage of theory and practise. The theory I have been taught has allowed me to break the rules and create ways to practically manage my diabetes that work for me. Independently.

Dinner at our place, (a few years ago now). Kerri, me, Bastian, Kyle and Monique.

Yesterday, Melinda Seed wrote a powerful piece about a session at ADC. Please read her post here to get an idea about why she is so angry. (Rightly so, I might add.)

I saw Mel just after the session. I’d not been in there, but it was clear from what Mel was saying, that the centre in question was doing a huge disservice to people with the diabetes they are meant to be helping. (For the record, when I wrote this post about why diabetes conferences can be challenging for PWD and why we really need our tribe around us, I was writing about moments like these.)

The part that really shocked me is that at this centre, HCPs could make the decision to discharge people from the service for ‘non-adherence’. The idea that people with diabetes are thrown out of healthcare because they are perceived to not be ‘adhering’ to a treatment plan (most likely, a generic plan that has not been set up for the individual PWD) is cruel. And it stems from the idea that people not following this plan don’t deserve healthcare.

This has stuck with me, because I had a conversation with someone this week about the whole issue of people with diabetes ‘not looking after ourselves’ after he used that language to describe someone with type 2 diabetes he knows well. ‘He doesn’t care,’ I was told.

I thought back to some of the most difficult times I’ve had since living with diabetes. I know full well that one of the first things to go when the going gets tough is my own diabetes management. When all that stuff was going in, the diabetes management plans were so beyond my comprehension or understanding, or I simply couldn’t see why it was relevant to me or how it was meant to be helping me. At those times, I wasn’t doing what I was expected to do. To outsiders, it may have looked that I didn’t care.

But I hadn’t stopped caring. I never, ever stopped caring.

In fact, the exact times that someone may have looked at me and said ‘You are not looking after yourself’ or thought that I was not following management plans are the times – more than any other – that I have needed someone to be on my side; not to point at me and tell me I was messing up. And certainly not to decide that they would no longer provide me with care.

I don’t know what we need to do to get the point across to others that the realities of diabetes management are relentless. Even when we pare back our management to the mere basics, there is still a lot to do. When things start to slip and slide, we are not being ‘non-adherent’, we haven’t stopped caring. And we certainly don’t deserve to be treated with contempt by being kicked out of a healthcare service.

Still caring…

Sometime last week, I marked a year since I started using Loop. Measure for measure my diabetes is a lot nicer to deal with these days and I know that I have settled into the comfort that comes with something that just seems to be working. The predictability of loop seems to fly in the face of all that is diabetes, so I do admit to not getting too comfortable with it all – even after fifty-two weeks of seemingly boring diabetes.

This was startlingly obvious to me when I reflect on my last two very busy weeks. As I ran around the Adelaide Convention Centre last week, not once did I think about Conference Hypo Syndrome. As I flew from Melbourne to Sydney to Adelaide and back home to Melbourne, I didn’t think, even for a moment, about travel lows and highs. And throughout the busy days, and the long busy nights of the two weeks – which involved hours sitting still in sessions and meetings as well as times of a lot more activity – apart from a cursory glance at my Loop app, diabetes didn’t bother me.)

It has been almost 12 months since I first spoke about Loop at a health professional conference, and it’s fair to say that I am still slightly traumatised by the memory of that session. I know that for the vast majority of the people in the room on that rainy day in Sydney, most had never even heard of the world of DIY diabetes, and the idea that a forty-something-year old woman with diabetes was standing before them talking about how I’d built my own pancreas was more than a little terrifying. And they let me know about it.

There was disbelief, horror and alarm that I was telling my story. I repeatedly heard people tell me that this was irresponsible and unsafe. And a number of HCPs were shocked, worried and appalled that the instructions for others to do what I had done were freely, easily and openly available online. (My cheeriness about open source wasn’t mirrored by most at ADATS.)

I’m pleased to say that wasn’t the response last week, during or following the DIYAPS symposium ‘The Brave New World of Diabetes Technology’, which featured me sharing about my own personal experience of why I decided to, and my first year of Loop; David Burren speaking about the technical aspects of the DIY technologies, and Cheryl Steele encouraging HCPs to support people using these technologies. The formal presentations were rounded out with Greg Johnson launching the Diabetes Australia DIY Technologies Position Statement.

It was standing room only, and great (and surprising) to see a number of endocrinologists in an ADEA symposium. We deliberately programmed the session to have a lot of time for questions, because we knew there would be lots! And there were.

There were a number of questions from the audience about what the role of HCPs is if someone comes to them and says they are, or they want to start, looping, and I think the consensus is that while we don’t necessarily need our HCPs to understand the intricacies of the specific technologies, and we are very clear that we don’t want, expect or need them to be able to help us build our loop, we need them to acknowledge that DIYAPS is a reality for more and more people with diabetes.

The overall feeling in throughout and following our symposium was of interest and curiosity. But even more, a desire to truly learn and understand more about the #WeAreNotWaiting world and where HCPs fit into it all, and how they can support those of us making the choice to loop.

The shift in the attitudes of health professionals is significant and important, and it extends far beyond DIY diabetes technologies. Because it all comes back to the whole idea of choice. There will never be only one right way for all people with diabetes. It doesn’t matter if we are talking about the foods we choose to eat, the technologies we choose to use, where we decide to see how HCPs, our decision to wait or not wait, or the support and services we choose to link in with. We need to have the space to do what is best for our diabetes. We need the freedom to make the choice. And we need our HCPs to support our decisions.

I have already shared this, but in case you missed it, the three presentations from our symposium can be watched here:

DISCLOSURES

My travel and accommodation to ADC was funded as part of my role at Diabetes Australia. Thanks to the ADS and ADEA for providing me with a media pass to attend the Congress. 

Every second Saturday morning, I can be found at my favourite café having a very important date. Aaron has a rehearsal at that time each fortnight, so it’s become habit for me and the kidlet to traipse to the café for coffee, breakfast and a chat. (Judge me all you like – I gave in to the thirteen year old after a coordinated campaign from a number of people, including one of the owners of this café and the kidlet’s grandparents. Apparently it’s a birthright of kids with Italian heritage to be provided with legal stimulants from when they are children. At least, that’s the story they sold me…while they reminded me that I was drinking the dregs from my dad’s evening espresso before I could talk. Anyway, the outcome of their campaign is the kidlet sits there with her latte feeling all grown up while I silently remind myself caffeine is not crack in an effort to not feel like a completely negligent mother. But I digress…)

The kidlet and I spend quite a bit of time alone together. I often drive her to school or collect her afterwards, as her school is halfway between home and work. And we have a lot of evenings together while Aaron is playing a gig somewhere around town. But those car trips are rushed and usually involve checking off what is happening that day/homework requirements after school and those nights at home usually see us snuggled in front of the TV watching a favourite movie. I love these times, but they’re not really built for detailed conversations.

Our Saturday mornings are leisurely and free of screens. Other than greeting the staff at the café (one who has appointed herself as the kidlet’s ‘other mother’ – something our daughter is more than happy to endorse, because Jo is far cooler and more fun than me!) and said hi to the other regulars, we sit down and focus just on each other.

It is these Saturday morning catch ups that are the most revealing, and provide me with great insight into what ‘s going on in her life. With no need to rush and the comfort of being somewhere safe, she shares things that just wouldn’t be shared in the rushed car trip to school in the morning.

My job on these dates is simple. Listen. Nod my head so she knows that I am paying attention. Don’t impose my ideas on to her. Try not to be shocked when she says anything I wasn’t expecting. And when she asks questions, I try to frame my answers in a way that hopefully helps her feel supported and encouraged to make her own decisions, rather than trying to foist my own onto her.

A few weeks ago when I was seeing my endo, I realised that she takes the same approach with me that I do with the kidlet. I always feel that I have her complete and utter attention and I never feel judged by her. While she may want to just tell me what to do and have me follow it to the letter, she doesn’t do that. When I ask questions, she helps guide me to an answer that I feel comfortable with.

I really believe that my endo’s style has meant that I am far more confident about the diabetes decisions I make each day. Knowing that I have been able to troubleshoot, or make a choice after weighing up all the options gives me conviction and assurance that my decision-making skills are sound, all the time knowing that she is there if I need to ask something.

I am sure it’s no accident that I am this way with my kid. I’ve seen how effective it is in helping me do better with diabetes…and it’s certainly translatable to parenting a teen!

Recently when I was preparing a talk for practise nurses about the way for both HCPs and PWD to get the most out of healthcare appointments, I came across this:

Listening doesn’t seem to come easily or naturally to a lot of us. We want to jump in and interrupt. We want to offer our suggestions (because of course we know best!). We want the person to listen to us and do what we say. And we want to fix things. We so want to fix things!

But the best thing we can do in a lot of cases is to just shut up. I frequently employ the WAIT (WhyAm Talking?) approach as I have found it is the best way to truly gauge what is going on and find out things that are too easily missed.

Those Saturday morning catch ups are illuminating for me. As well as seeing how my daughter is dealing with the sometimes tricky trials and tribulations of teenage-hood, I am being allowed a front row seat to a lot of what is going on in her life – things I may otherwise miss. Most of the time these days, she doesn’t need me to tell her what to do as she is working out stuff. She needs to feel safe, comfortable and not judged as she bounces her ideas off me; and to be given the space to learn how to weigh up options, make errors in judgement and work out what is best for her.

And that sometimes, making a decision that isn’t necessarily the best may not be the worst thing in the world. (At least – that’s what I’m telling myself when I see the look on her face as she takes her first sip of coffee for the day, and I know I have been complicit in her teenage caffeine addiction…)

I had an endo appointment yesterday. It was my first in over six months, but this was by choice, rather than inattention. Last November, I decided that I really didn’t need a three month follow-up appointment, and my endo agreed. So, after settling my account for the visit, I made an appointment for May this year. A work trip to Copenhagen via London necessitated a reschedule and this was the first appointment time available that worked for me. The six month follow-up timeframe was pushed out to eight months.

Early last week, I called for a pathology request to be sent to me so I could have a blood draw before heading in. While I had a list almost as long as my arm of things I wanted to discuss, I really am trying to stay on top of having regular screenings so that we can compare results year to year.

Clearly, I am in a really good headspace about my diabetes and, in particular, diabetes HCP care, at the moment. I am happy to attend appointments. Even though I needed to cancel the May appointment, I made a follow up and kept it. I had all my bloods done beforehand. This is a far cry from how I was just a couple of years ago … when actually, I was crying just thinking about it all.

So, last Thursday, I made my way to a local pathology clinic, my request slip scrunched tightly in my hand. And I realised that even with my generally low level of worry about all-things-diabetes, I felt my anxiety levels going up in the days leading to, and the day of, the blood test.

I’m nervous about having my A1c done,’ I said to someone last week, and, puzzled, she asked why. It was a sensible question to ask, because truthfully, of all the things I was being checked for, that was the one that I had a pretty good idea what the result would be.

I estimated my A1c and got it right to 0.2 percentage points. The truth is, I am totally ambivalent about A1c. I couldn’t care less about the number because my TIR is where I want it, and I knew this would be reflected by a way-in-range A1c number. (I take no credit for it – it’s all Loop.)

But my kidney function? My cholesterol? My thyroid function? Coeliac screening? Everything else? I have no idea how they are tracking. There is no app on my phone to remind me how I going with those, or helping me guess what they me be. I have no Loop for my kidneys!

I realised that was the source of the anxiety, not my A1c, even though that’s where I was pointing. I guess that makes sense: feeling nervous about A1c results is expected and easy to explain. But the truth is that wasn’t my I was feeling uneasy.

Those complications screenings that I am diligently trying to make sure I have annually still terrify me. Both in the lead up to having the checks done, and then as I wait for the results.

The beast of diabetes that lives within our very core behaves in different ways. Often it is slumbering, lying almost dormant, lulling us into a false sense of all is well. I guess that is how I have felt since I started looping. I say that I am the least burdened I’ve ever been my diabetes because my diabetes is not thrashing around and making itself known so much. But this last week, it has started to wake, reminding me of its presence. I have felt diabetes more in the last week than I have in the last ten months.

I tried to describe this to a close friend the other day – a friend who has seen me live through some pretty horrid diabetes times, and celebrate some damn fine ones. She asks sensible questions and is always listening and learning. She gets it. But she struggled to understand how I could move from saying I’ve felt the best I have ever felt in relation to my diabetes to suddenly speaking of the anxieties that I hold so deep; especially when nothing had changed.

It’s the unknown. It’s the waiting. It’s the fear of what I may be told. That is the beast.

Today, the lightness in my step and in my heart as returned. The appointment went well, the results showed little, if any, change from the last screening checks. I am back to feeling the way I was before last week. After stirring, and stretching, the diabetes beast has curled up and resettled, and is hibernating again. At least, for now…

Waiting with diabetes

Yesterday an article was published across Australia detailing a new report showing that Australians with diabetes are missing out on the recommended levels of diabetes care. Most of these people receive their diabetes care in general practise.

A couple of things before I go on:

  1. The article was behind a paywall, but Diabetes Australia shared an image of a portion of the it, and that can be accessed here. If you have access to a News Ltd. account, you can read the article here.)
  2. I want to say that in writing this post today I do not want to be seen to be doctor-bashing. I don’t believe that is constructive in any way whatsoever. However, I do think that there needs to be acknowledgement that the level of diabetes care in general practise is not ideal for a lot of people.
  3. The language of the article was atrocious. It appeared first under the heading ‘How diabetes sufferers are dicing with death’ Seriously, journos, ready the freaking Diabetes Australia Language Position Statement.

Onwards…

There was some discussion online after the article was shared, with a few doctors believing the article wasn’t all that helpful and feeling that it was unfairly unfavourable towards GPs. Someone also commented on the language used. (I’m not sure if they meant on Twitter or in the article. The language in the article was strong and very critical of GPs.)

The report is damning, and it shows that the results for people with diabetes are not good at all with only one in three people diagnosed with diabetes receiving expected standards of diabetes care. Only half had their A1c checked, and of those, only half again were in range.

This is despite there being a documented diabetes annual cycle of care (for which GPs receive funding). If completed fully, the annual cycle of care includes: annual A1c, cholesterol, and kidney checks, weight and blood pressure checks, as well as two-yearly eye and foot checks.

For me, it shows yet again how stacked the decks are against so many people with diabetes. We don’t receive the level of care recommended and then, when we don’t meet expected outcomes, or develop diabetes-related complications, we get blamed.

If we want to talk about things that are unhelpful and not constructive, let’s begin with that.

We seem to forget that most people don’t innately know what is required to manage diabetes, or what screening checks are required – especially people newly diagnosed with the condition. A lot of people rely on their healthcare professional – in the case of diabetes, usually their GP – for this.

I’ve written before that in my case, my GP is not in any way involved in my diabetes care. This is a deliberate decision on my part. I understand it is also a privileged decision – I have easy access to my endocrinologist, and other diabetes specialists for all my diabetes healthcare needs.

But that’s not the case for everyone, and a lot of people are reliant on their GP for all their diabetes clinical care.

People with diabetes are being let down.

Even though pointing fingers and appropriating blame is not necessarily helpful, it’s what we seem to do. We can blame the system. We can blame a lack of funding. We can blame a lack of continuity of care. We can blame the fact that there are no coordinated screening programs. We can blame the need for more specialist care. We can blame a lousy and ineffective electronic records system.

But what we can’t do is blame people with diabetes. No one asks to get diabetes. No one asks to get diabetes-related complications. So how is it possible that in a system that is letting us down, we are the ones blamed when it happens?

Also, this week, we have heard story after story of missed type 1 diabetes diagnoses with people reporting that despite seeing their GP (often repeatedly) about their symptoms, they were not checked for type 1 diabetes.

It is undeniable that some GPs simply do not know enough about diabetes to diagnose it in the first place, and then to treat it in an ongoing and effective way, and this is leading to those of us living with it not receiving an adequate level of care to live as well as possible with diabetes.

While there may be some hard truths in the report, hopefully the result will be better care for people with diabetes. Because, surely, that is all that matters.

As National Diabetes Week activities began, I kept a close eye on the Twittersphere to see just how the week was being received. Pleasingly, there were a lot of mentions of the #ItsAboutTime campaign, and I set about retweeting and sharing activities by others involved in the week. 

One tweet, from Edwin Pascoe, caught my attention:

Edwin Pascoe is a registered nurse and credentialled diabetes educator in Victoria.  He is currently undertaking a qualitative study as part of a PhD at Victoria University into the lives of gay men and type 2 diabetes in the Australian context.  Data is collected but analysis is underway.

I read Edwin’s tweet a few times and realised that he is absolutely right. I can’t think of ever seeing anything to do with any diabetes campaign that addresses the specific issues faced by LGBTI people with diabetes. So, I reached out to Edwin and asked if he would like to write something for Diabetogenic. I’m so pleased he did. 

One of the criticisms of diabetes representation in the media is that it lacks diversity. I completely agree with that sentiment. Because while we certainly may share stories, we also need more voices and more perspectives, and come to understand that there are different, unique and varied experiences and issues faced by different groups. 

I’m thrilled to feature Edwin’s post today, and am so grateful that he took the time to write it. 

__________________________________________________

CDE, Edwin Pascoe

Diabetes is a chronic condition that is managed in the context of people’s lives and this fact has been increasingly recognised by peak bodies in diabetes within Australia such as Diabetes Australia, Australian Diabetes Society, Endocrinology Society of Australia and The Australian Diabetes Educators Association.

Diabetes education has therefore become not just about defining diabetes and treatment for people but exploring how people with diabetes manage these things in context.  Creating the freedom and space for people to speak their truth will allow health practitioners to explore appropriate solutions that are congruent with the person with diabetes needs.

The following will cover some of this context and how sexual orientation may influence diabetes.

Context is everything

The context of lesbian, gay, bisexual, transgender and intersex (LGBTI) persons has not been recognised formally by these same peak bodies in diabetes specifically.  Arguments shared informally have suggested that what people do in bed does not affect diabetes and considering we have full equality under the law why would it matter. Further to this health care professionals (HCPs) have suggested none of this worries them as all people are treated the same, but herein lies the problem as:

  1. Not all people are the same.
  2. LGBTI people are still not fully recognised under the law in Australia despite the recent success in Marriage Equality. For example religious health care services and schools are permitted under law to fire or expel anyone that does not follow their doctrines.  In some states gay conversion (reparative therapy) is still legal despite the practice having been shown to cause significant psychological harm.  It is also important to note that it was only quite recently that the last state Tasmania decriminalised homosexuality in 1997 so this is in living memory.
  3. The law is not the only determinant of social acceptability but is entrenched in culture (we know this from numerous surveys that have seen the up to 30% believe that homosexuality as immoral (Roy Morgan Research Ltd, 2016)). Law changes have only meant that in part hostilities have gone underground.
  4. The focus on sex or what people do in bed fails to see people as whole and often lead to false claims of promiscuity in LGBTI people. There are also assumptions in relation to what people do in bed for example anal sex is one of these stigmatised practices.  In reality not all gay men practice this and a significant percentage of heterosexual people do engage in anal sex.

Reports from the Centre for Disease Control and Prevention in the USA identified that 44% heterosexual men and 36% of heterosexual women have engaged in anal sex (Chandra, 2011).  Mild displays of affection such as holding hands and leaning into each other engaged routinely by heterosexual couples are heavily criticized when observed in same sex attracted people causing LGBTI people to self-monitor their behaviour.  If they choose to engage in this behaviour it is often considered and calculated rather than conducted freely.

The result of this is that there is a lot of awkwardness around the topic of sexual orientation for both the HCP and LGBTI person, something not talked about in polite company.  This means that rather than talking about their health condition in context there is tendency to talk in general terms if they are recognised as LGBTI, or they are assumed heterosexual until the person outs themselves during the consultation.

However outing oneself can be an extremely stressful experience as, despite good intentions by HPCs, LGBTI people may still be fearful and remain silent to the point of even creating a false context (a white lie to keep themselves safe).  It has been a known practice among some LGBTI people that some engage in the practice of ‘straightening up’ the house if they know HPCs or biological family members are coming to their homes, to again keep themselves safe.  This is not to say that all situations are this bleak but that for some at least it is.  Does this prevent people from seeking help in the first place when required?

Studies on rates

In the USA Nurses’ Health Study, it was noted that the rates of diabetes in lesbian and bisexual women was 27% higher (Corliss et al., 2018).  Anderson et al. (2015)examined electronic records for 9,948 people from hospitals, clinics and doctors’ offices in all 50 states (USA).  Data collected included vital signs, prescription medications and reported ailments, categorised according to the International Classification of Diseases diagnostic codes (ICDs). They found that having any diagnosis of sexual and gender identity disorders increased the risk for type 2 diabetes by roughly 130 percent which carried the same risk as hypertension.  Wallace, Cochran, Durazo, and Ford (2011), Beach, Elasy, and Gonzales (2018)also looked at sexual orientation in the USA and found similar results.

However one must consider the country in which this data was collected as acceptability of diverse sexualities and differences in health care systems do make a difference. In a study within Britain the risk for type 2 diabetes was found to be lower than the national level (Guasp, 2013).  In Australia the rates of diabetes in a national survey came out as 3.9% in gay men in 2011 (Leonard et al., 2012)and this was the same as data collected by Australian Bureau of Statistics (2013)for that year (they did not differentiate between types).

Life style factors

Life style factors such as exercise and food consumption are important to consider as these are tools used to manage diabetes.  Studies have found significant level of homophobia in Australian sport that prevents participation(Erik Denison, 2015; Gough, 2007)and that there are elevated levels of eating disorders including binge eating disorder in LGBTI people (Cohn, Murray, Walen, & Wooldridge, 2016; Feldman & Meyer, 2007).

Qualitatively, a study was conducted in the UK/USA by Jowett, Peel, and Shaw (2012)exploring sex and diabetes, and in this study one theme noted was that equipment such as an insulin pumps put participants in a position to have to explain and the fear they were being accused of having HIV.

Stories

The following two stories may help give context to how sexual orientation has influenced these two people’s lives.

The first story is regarding a gentleman who came to see me for diabetes education for the first time who had lived the majority of his life hiding his sexual orientation due to it being illegal.  During the consultation I was trying to explore ways to increase his activity levels in order to improve blood glucose levels, strength and mental health.  He advised he didn’t like going for walks even if it was during the day in a built-up area as it was dangerous.  When asked to explain this he said he feared being attacked due to his sexuality as he felt he looked obviously gay, but I didn’t see that.

A second story later on was from an elderly lesbian woman who was showing me her blood glucose levels.  I noted her levels were higher on Mother’s Day, so I obviously asked what was going on there. She bought out a picture of her granddaughter from her purse which immediately bought a tear to her eye. She said her daughter had a problem with her sexual orientation and so stopped her from seeing her granddaughter, and that it had been two years since she had seen her.

It’s only the start

It is important to note that each letter of the LGBTI acronym has their own unique issues with regard to diabetes.  I have mainly talked about gay men here as this is what my study covers but there are studies on transgender people (P. Kapsner, 2017), increased rates of diabetes in people with HIV (Hove-Skovsgaard et al., 2017)and of course many others.  In Australia we don’t routinely record sexual orientation, only in areas of mental health and sexually transmitted diseases, and as such data is lacking in this area. It’s time to be counted and there is a need to learn new ways to improve engagement for LGBTI people with diabetes.

References

Anderson, A. E., Kerr, W. T., Thames, A., Li, T., Xiao, J., & Cohen, M. S. (2015). Electronic health record phenotyping improves detection and screening of type 2 diabetes in the general United States population: A cross-sectional, unselected, retrospective study.

Australian Bureau of Statistics. (2013). Australian Health Survey: Updated Results, 2011-12. from http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/by%20Subject/4338.0~2011-13~Main%20Features~Diabetes~10004

Beach, L. B., Elasy, T. A., & Gonzales, G. (2018). Prevalence of Self-Reported Diabetes by Sexual Orientation: Results from the 2014 Behavioral Risk Factor Surveillance System. LGBT Health, 5(2), 121-130. doi: 10.1089/lgbt.2017.0091

Chandra, A. (2011). Sexual behavior, sexual attraction, and sexual identity in the United States [electronic resource] : data from the 2006-2008 National Survey of Family Growth / by Anjani Chandra … [et al.]: [Hyattsville, Md.] : U.S. Dept. of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics, [2011].

Cohn, L., Murray, S. B., Walen, A., & Wooldridge, T. (2016). Including the excluded: Males and gender minorities in eating disorder prevention. Eating Disorders, 24(1), 114-120. doi: 10.1080/10640266.2015.1118958

Corliss, H., VanKim, N., Jun, H., Austin, S., Hong, B., Wang, M., & Hu, F. (2018). Risk of Type 2 Diabetes Among Lesbian, Bisexual, and Heterosexual Women: Findings From the Nurses’ Health Study II. Diabetes care, 41(7). doi: https://doi.org/10.2337/dc17-2656

Erik Denison, A. K. (2015). Out on the fields.

Feldman, M. B., & Meyer, I. H. (2007). Eating disorders in diverse lesbian, gay, and bisexual populations. International Journal of Eating Disorders, 40(3), 218-226. doi: 10.1002/eat.20360

Gough, B. (2007). Coming Out in the Heterosexist World of Sport: A Qualitative Analysis of Web Postings by Gay Athletes. Journal of Gay & Lesbian Psychotherapy, 11(1/2), 153.

Guasp, A. (2013). 2013Gay and Bisexual Men’s Health Survey.   Retrieved 09/07/2018, 2018, from https://www.stonewall.org.uk/sites/default/files/Gay_and_Bisexual_Men_s_Health_Survey__2013_.pdf

Hove-Skovsgaard, M., Gaardbo, J. C., Kolte, L., Winding, K., Seljeflot, I., Svardal, A., . . . Nielsen, S. D. (2017). HIV-infected persons with type 2 diabetes show evidence of endothelial dysfunction and increased inflammation. BMC Infectious Diseases, 17(1), 234-234. doi: 10.1186/s12879-017-2334-8

Jowett, A., Peel, E., & Shaw, R. L. (2012). Sex and diabetes: A thematic analysis of gay and bisexual men’s accounts. Journal of Health Psychology, 17(3), 409-418. doi: 10.1177/1359105311412838

Leonard, W., Pitts, M., Mitchell, A., Lyons, A., Smith, A., Patel, S., . . . Barrett, A. (2012). Private Lives 2: The second national survey of the health and wellbeing of gay, lesbian, bisexual and transgender (GLBT) Australians.

  1. Kapsner, S. B., J. Conklin, N. Sharon, L. Colip; . (2017). Care of transgender patients with diabetes. Paper presented at the European Association for the Study of Diabetes, Lisbon Portugal http://www.abstractsonline.com/pp8/#!/4294/presentation/4612

Roy Morgan Research Ltd. (2016). “Homosexuality is immoral,” say almost 3 in 10 Coalition voters [Press release]

Wallace, S. P., Cochran, S. D., Durazo, E. M., & Ford, C. L. (2011). The Health of Aging Lesbian, Gay and Bisexual Adults in California. Policy brief (UCLA Center for Health Policy Research)(0), 1-8.

I met someone the other day – a friend of a friend – who had recently been diagnosed with type 2 diabetes.

Within the first 15 minutes of our casual conversation standing in the street as the Saturday morning rush happened around us, I heard these words from their mouth:

‘It’s my own fault. I should have gone to the doctor sooner.’

‘I am not a good diabetic at all.’

‘I am doing a really bad job checking my bloods.’

‘I’m not sure how long I need to keep checking my bloods. Or how often, really.’

‘I was told if I didn’t look after myself I’d need injections. I’m terrified of needles.’

‘I have a list of foods that I should and shouldn’t eat.’

‘I’ve never been sick before. And now I feel as though people think I am sick. But I feel fine.’

‘The doctor said I don’t have diabetes too badly, but then told me all the things that could go wrong.’

‘I am scared. I don’t know anything about diabetes, but I am scared that I am going to go blind. I was told that’s what would happen.’

Here was an incredibly confident, capable and clear thinking person, not much older than me. Until now, their contact with HCPs had involved annual flu jabs (kudos for that!) and a trip to the GP for the occasional virus. They told me they’d never spent a night in hospital.

The diabetes diagnosis came about after their GP suggested routine blood checks on the day they went in for their flu shot. The following week, they were told they had diabetes. This was just last week. So far, this person had spent about fifteen minutes with their GP and 45 minutes with the diabetes educator who works out of the clinic.

And look at how diabetes has been presented in that time. Already, this person feels as though they are a ‘bad diabetic’ and failing in their treatment. And they are scared.

I responded to some of those comments gently:

‘You DID go to the doctor – for your flu shot. And when they suggested you have a blood check, you did it there and then.’  

‘You are doing a great job. There is no such thing as a bad person with diabetes. We do the best we can with the information at hand.’

‘This is all new. You are checking your blood sugar and that’s amazing. Well done. You didn’t have to even think about that two weeks ago!’ 

‘Do you have a follow up appointment? When you go back, as why you are being asked to check at the times they’ve suggested. And if this is something you’ll need to do for the next week…or month…or longer.‘ 

‘It’s perfectly understandable to be afraid of needles. I don’t know anyone who likes them. And you may need insulin one day. But not yet. And if you do, that’s not because you have failed. It’s because diabetes needs to be treated and sometimes with type 2 diabetes, (and always with type 1 diabetes) insulin is that treatment.’   

‘Have you been referred to a dietitian? It’s really hard to change the foods you’re eating if you’re not sure about diet. Ask for a referral.’  

‘I don’t really think of having diabetes as ‘being sick’, so I understand what you mean. But you will need to think about your health differently. That doesn’t make you a sick person, though.’

‘It’s perfectly, perfectly understandable to feel scared. If you think that having a chat with a psychologist or counsellor will help with that, ask your GP.’  

‘Also … find some other people with diabetes and talk with them. Here’s my number. Call me any time.’

Imagine, if instead of feeling the way they were feeling, this person felt empowered, confident and assured – even if there was a bit of fear and uncertainty in there.

On the day we are diagnosed, we walk into the GP’s surgery not having diabetes. And walk out with a diagnosis.

It starts early. Those messages at diagnosis can impact how we feel about our diabetes for a very long times – indeed the rest of our lives.

Diabetes Week kicked off in the UK yesterday with the launch of their very own Language Guidance statement. Well done to all involved. It’s great to see another language document joining the movement started by Diabetes Australia back in 2011, and added to in recent years by the ADA and AADE (who presented their Guidance Statement last year), diaTribe Foundation (who has written extensively on the issue) and the Team Novo Nordisk (who developed a great guide for media reporting on the team.) And now, it’s great to see the UK on board, too.

Click to read the new UK Diabetes Language Matters guide.

In Australia, it’s been wonderful to see just how widely our statement has been used. Conference organisers have embraced the Diabetes Australia statement, including it in speaker packs, encouraging presenters to align their talks with the document. (The table which offers suggestions for words and phrases that can be problematic is a very useful reference tool.)

I can still remember the launch of the Diabetes Australia statement. It was at the State Library of Victoria which played to my word and book nerdiness almost perfectly. There could not have been a better setting for a media launch about words, language and diabetes.

Little did we know back then just how significant or far-reaching this document would be. At first, we were met with a lot of resistance, and people thinking that it was political correctness gone slightly mad. But we persevered and made sure that we were clear why this work was necessary.

I remember sitting in talks given by HCPs and flinching constantly as judgemental and stigmatising language was considered appropriate. Now, in Australia at least, it is startling when someone uses words such as non-compliant, because the ongoing, constant and committed efforts by many have completely changed the way that the words are used when speaking about and to people with diabetes.

While the official statement was launched seven years ago, the impact language and words have on diabetes was not a new area of discussion. People with diabetes have been talking and writing about how significant the (positive and negative) impact of words can be. I remember seeing discussions about it on the Reality Check forum not long after I was diagnosed, and speaking about it at events we ran back when the consumer program started at Diabetes Victoria in the early 2000s. We knew that words had power. We just needed to bring everyone on the ride with us to get them to understand it too.

And that’s why the Diabetes Australia statement – and all those that have come since – are so important. They provide a framework to refer to; something to hold up as an example of how things could be better.

Even though there has been a lot written and spoken a great deal about language and diabetes over the last seven years, we’re not finished. This is not a static movement. No one can for a moment think that we have ‘done’ language; there will always be new and different things to consider. Some particular areas of interest to me in recent times include the language we use when talking about hypos. And how we reframe the way we talk about diabetes complications.

I wrote this piece after the ADA Annual Scientific Meeting last year when I realised that we need to keep moving forward because there is still much to be done.

But while we do that, I believe it is important that we never deviate from the intention of the language matters movement. It is not about dictating to people with diabetes the words we can and cannot use when talking about our own diabetes, or criticising the words we choose to use. It is about framing the way people speak to and about those of us living with diabetes, and encouraging the use of language that is inclusive, engaging, non-judgemental, destigmatising and respectful. It is about using words that make us feel empowered, positive, hopeful.

Fundamentally, it is about making things better for us.

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