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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…)

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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.

On Saturday, I had the pleasure of attending the Australia Diabetes Society’s (ADS) annual Insulin Pump and CGM Workshop. I’d been invited along another ten or so people with diabetes who already wear CGM or Libre to share our insights into living with and wearing sensing devices.

(Quick shout out to the ADS. For those who don’t know, the ADS is the professional body for endos in Australia. Over the last few years, their leadership team has been absolutely instrumental in finding ways to better include PWD in what they are doing. As an organisation, they have been innovative, and responsible for ground-breaking initiatives such as the Enhancing Consulting Skills resource. We need our professional bodies to be like this. And we need them to work with us so that we can provide our perspective to the work they are doing.)

The idea of the workshop is for endocrinologists to have hands on experience of the technology rather than just what they see and are taught at industry events. (For the record, the industry events are super important because they are an opportunity to learn about the shiny technical side of things. And get branded pens. Pens are awesome.)

Discussion was the focus of this session. There was no long presentation with people taking notes. Instead, we were asked to sit at tables with endocrinologists, and encouraged to share our the real life experience of wearing the technology.

Now, I don’t know about you, but this is always the way I want to learn and to share information. I seem to get annoyed at sessions when I have someone speaking at me for ages, telling me what they think I need to know. I much prefer to have discussions and watch conversations go off on tangents, providing attendees with the details and information that is relevant to them; that they will be able to take home with them and put into practise.

The thing about having PWD in the room is that we have a tendency to hold little back. My friend Jodie and I were at the same table. We both wear Dexcom, but our experiences are quite different. (Or as I put it: ‘She does what she’s meant to. I don’t’.) This was actually a master stroke, because it showed the endos just how varied our experiences can be. And that while what works for one person may not necessarily work for another, there really may not be a ‘right’ way to do things.

Jodie and I demonstrated putting in new sensors so that the endos could see how the actual insertion works. We talked about using an alcohol swab where we were about to site our sensor (in this case, I was the one following the instructions I’d been taught when I first started using CGM. ‘ Yeah…I can’t be bothered,’ said Jodie and I wanted to high five her and welcome her to the dark side of non-compliance.)

There was one endo at our table who was pressing every single one of my ‘OH-YES-LET’S-TALK-ABOUT-THAT’ buttons, and the first thing she said when we removed the sensor from the packaging was ‘Why is there so much waste in there?

We spoke about the fact that current Dex sensors don’t have reusable inserting devices and that really, the companies could perhaps do a little more to find ways to reduce waste, while continuing to produce a sterile product. (The G6 apparently has addressed this…)

At one point, the Dexcom rep. mentioned the share function on the G5, and as if by magic, my new favourite endo jumped in with ‘Who makes the decision as to whether or not their data is shared.’ I wanted to hug her, but it was the first time we’d met and I thought that might be a little creepy. But yes; oh yes! We were going to talk about consent.

The absolute best thing for me was that not once as I shared by clearly (and absolutely owned) deliberately non-compliant CGM existence, did one of the endos look at me with disdain, shake their head, raise an eyebrow or tut tut. They asked how what I did made things better for me.

Some examples of questions and my answers:

Why do you wear the sensor on your arm and not your stomach?

I find it more comfortable and it reads more accurately. Plus, it lasts longer there than on my tummy.

Why do you restart the sensor?

Because I’m frugal and don’t want to fork out $90 every seven days when I know it works perfectly well for me still at 21 days 

Look, the Dex reps should turn away right now, block their ears and pretend that they don’t understand me, because I am going to be really candid about this. Firstly, I am going to say that I adore this product. I would say that no matter who is in the room – I’m not sucking up to the AMSL reps because I’m hoping they’ll throw some free product my way. They don’t and that’s fine. I mean it. This is a brilliant product that I literally trust with my life. But there are some things that piss me off…

Sensors are around the $90 mark. They are approved for use for seven days. But at the end of those seven days, the sensor is still working perfectly. In fact, many people report that it works even better after the first week. Why should I throw out a perfectly good, working product if it is still doing what it says on the box? 

I know the risks. I am choosing to do this myself and I am more than happy to own it.

But while we’re on this topic. The transmitter is AUD$540 every three months. That’s right, after three months, it stops working. The batteries are still good to go for a couple of months, but the device is factory set to stop working. Now, this has been done with a whole lot of safety considerations in mind and I understand those. But again, a device that is not rechargeable and still has some use in it has to be thrown out.

So, I don’t really have any qualms about using all sorts of DIY solutions that allow for the transmitter life to be extended.

I’ll say it again – I know the risks. This is about me and no one else. I am happy to take those risks.

So, you don’t calibrate it as recommended. Why?

Because sometimes, stopping whatever I am doing to calibrate is not something I want to do. Plus I’ve been wearing this for over 2 years now and I’ve learnt what to trust and what not to trust and how to use it safely. I have set my own boundaries that I feel are acceptable and perfectly safe.  

Do the alarms bother you?

They used to. But now I’ve managed to customise them to a way that works for me. I have all the alarms on now, but in the past, I had all the high alerts and alarms disabled because they pissed me off so much. But the predictability of Loop means that the alarms are rare and I generally I have the headspace to respond to them as they happen. (Although the please calibrate one can drive me nuts sometimes.) 

Do you share your CGM data?

I have in the past, but I don’t these days. As an adult with diabetes, I make that decision and there have been times when I’ve liked the idea of someone having my back – usually when I’ve been travelling solo. But since I’ve been looping there has been no need.  

What’s Loop?

Um…we’re going to need a longer session… Here’s the address to my blog. Sorry for all the swearing.

After the event, the event organiser sent me a lovely text message, thanking me for my time and for speaking at the Workshop. She said that the CGM session was a highlight for many of the attendees. ‘People with diabetes make the best teachers,’ she added. And she’s right. When we are talking about what it’s like to actually live with these device on our bodies and in our everyday life, we really are the best people to talk about it! HCPs are great at talking about the science and the clinical side of things. But we make diabetes real because we are living it. You can only get that when you go straight to the source. And yes; we’re the source.

Disclosure

The ADS provided me with a $50 gift voucher to thank me for my time on Saturday. I was also given one Dexcom sensor to insert at the Workshop which I am still wearing. (And will do so for the next three weeks or so…)

I caught up with Grumps a couple of weeks ago in London and bored/annoyed him to death with requests for him to write for me again. Success! Off you go, Grumps… 

___________________________________________________________

A couple of weeks ago I was lucky. Lucky that my great friend Renza was in the UK. Lucky that we had time to catch-up. Lucky that JDRF UK invited us both to talk with their staff about #LanguageMatters & #TalkAboutComplications.

Smiley / Grumpy

One of the questions during the session was around how can we get the language matters message out to healthcare professional?

Renza gave her view. I can guarantee that it was brilliant and articulate. But if I’m totally honest, (which I can be now, with her back on the other side of the world again), I wasn’t totally listening.

I’m shit at multi-tasking you see. In fact, I struggle with single tasking most days.

You see I was thinking (another thing I struggle with….)

It’s easy (relatively) to get the message out to my diabetes team:

  • Discussions
  • Position statements.
  • Frowns and a raised eyebrow at the required time.

But what about my extended team?….. How would I do this?

What Would Grumpy Do?

Basically, I did what I often do, (which pisses people off).

I answered with a question.

  • ‘Who is in my HCP team?’
  • ‘How many HCPs are in it?
  • ‘Do I see the same HCP every time?’

Ok. That’s three questions. (I’m also shit at maths.)

I’d kind of inadvertently got a head start on this one because at the beginning of my foot ulcer treatment (fucking ages ago), I considered how joined up my care would be.

Don’t get me wrong. Each team is fantastic and the care is brilliant. It’s not joined up, though.

My brain works, (when it actually works), in pictures. So, I mapped this out:

Grumps’ brain drew this.

There are a lot of HCPs involved here, in several locations and different fields of expertise. The only person present at every single appointment and meeting is me.

So, I am the one best placed to ensure that my care is joined up. In which case, I am best placed to ensure that I am talked to in a consistent way, using the language that I am personally comfortable with.

I’m not saying that its easy. I am saying that it’s my responsibility to try.

The best manager I ever had used to tell me: ‘What you permit, you promote’. If you let people treat you in a way that you do not like, it validates it to them.

Live Long and Bolus!

Grumps.

Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here

There is something to be said for the comfort of routine. Yesterday, I had my annual eye check. And like clockwork, it played out the same way it always has.

Just like always, the week before my appointment, I received a reminder message from doctor’s office. That cued the call to my dad to lock him in for chauffeuring and morale duties.

Just like always, a little part of the back of my mind was occupied with the upcoming appointment and a series of ‘what if’ scenarios played out.

Just like always, the night before my appointment, my anxiety levels were heightened. I tried to alleviate them with a bit of twitter humour.

Just like always on the day of the appointment, Dad picked me up and just like always, I told him how nervous I was. ‘Twenty years of diabetes now, dad.I’m worried this might be the appointment where the news isn’t all good.’

And just like always, he said ‘Just wait and see. There’s not point worrying before you see your doctor.’ His morale boosting comments, just like always, right on point.

Just like always, I nervously waiting in the second waiting room to be called in to the first appointment.

Just like always, the orthoptist had me read from a chart and put drops in my eyes and sent me on my way to the next waiting room. And just like always, my vision blurred and my heart rate increased.

Drops in; vision blurring. Waiting…

Just like always, my dreamy ophthalmologist called me into his room. (Dreamy because he’s lovely to look at. But more dreamy because he is just so damn kind to me in my ridiculous nervous state). ‘Are you well,’ he asked, just like always asks, and I realised that I have not always answered, ‘Yes. So well…’

Just like always, he said: ‘Your vision and eye pressure look good, Renza. No changes at all since last time.’

Just like always I allowed myself to smile a tiny bit. But no too much. Because the reason we were really there hadn’t happened yet.

Just like always, he turned down the lights in the room and shone an almost painfully bright light into my eyes. He asked me to look this way and then that way. He looked at the front and back of both of my eyes.

And just like always, when he’d looked for all he needed to look for, he turned the lights back on and smiled at me. ‘There is no sign of retinopathy or any other diabetes-related eye problems. Your eyes are great.’

Just like always, I breathed again. I smiled. Really smiled. ‘I’ve had diabetes for twenty years now. Today’s news has made me really happy.’ I said. And I thanked him for giving me such good news.

Just like always I wandered back down the corridor, feeling far lighter. I paid the bill, I found my dad.

And just like always, he looked at my beaming smile and said, ‘I told you so. Just like I always do.’

I wrote a piece last week about how nervous I was about a talk I was giving at the Victorian ADEA Branch Conference about my personal Loop experience. The conference was held on Saturday, and I did my talk and escaped unscathed. It’s a good news story!

Thanks to everyone who encouraged and sent me words of support before my talk. I decided that I’d come clean before starting and admit to the audience that I was feeling a little nervous because I understood just how contentious many may consider what I was about to say.

Having legendary CDE Cheryl Steele share the stage with me – and her story with the audience – certainly helped!

Here are my and Cheryl’s talks.

A reminder – I am not recommending using Loop. This is my personal story and my personal experience. If you would like more information, please search ‘Loop’ on the blog. (There’s lots here because I keep banging on and won’t shut up about it!)

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