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I have some illuminating discussions with healthcare professionals. After I’ve had an in-depth conversation, I find myself going over things they have told me and discover that I have always learnt something new about what it means to work in a system that is, in many ways, broken. I learn how their approach to healthcare changes year by year as they try to do their best for the people they see each day. And I realise that I never, ever could do their job.

Other times, I shake my head a little because I wonder how their understanding of the day-to-day challenges of living with a chronic health condition is so far removed from reality. In these cases it’s almost as though we are speaking different languages.

Recently I spoke to a group of HCPs about those differences. I focused on how we manage to fit diabetes into our busy lives in ways that HCPs never can imagine and how the neat text book description of life with diabetes is very different from the mess that we are trying to tame each day. I spoke about how what they say can be read in a multitude of different ways by those of us on the other side of the consultation, and to think about words carefully. And I spoke about how although some education of HCPs about diabetes suggests that there is a one size that somehow fits us all, the truth is that we require our education to take into consideration every size and shape possible and for it to be delivered accordingly.

A doctor came up to me afterwards and thanked me for my talk. ‘Thanks for making me think differently about some things,’ she said. I loved that she said that, and I told her so. ‘Actually, that’s always one thing that I hope to get when I hear someone speak about diabetes – a new perspective or way of thinking about something that I think I have all worked out.’

We chatted a little about what she’d heard that had surprised her and would she would now be thinking about in other ways. I may have high fived her when she said that she would now be taking a lot more care with the language that she uses. ‘I had no idea that what I was saying had such stigma attached. I honestly thought I was saying the right things. I never meant for people to feel blamed, but I can see now how I could have come across that way.’

That’s been one of the challenges of the #LanguageMatters movement in diabetes. As we’ve tried to bring HCPs along for the ride, we’ve had to do it in a way that doesn’t make it sound like we are berating them. I do and will continue to call out language that impacts on PWD negatively because it does matter. Language has the power to make us feel like we can take on diabetes or be defeated by it; it can make us feel like we are doing all we can and that is enough, or that we are failing and will never do enough. Again, for those down the back – language does matter. But I truly have never believed that HCPs use language with any malice or intent of harm. It’s often just because they repeat the words and phrases that have always been used.

I explained this to the doctor and we spoke about how to get the message across in a way that highlights and promotes collaboration. After we’d been speaking for about 10 minutes, she said ‘I have a question for you,’ I nodded, eager to hear what she wanted to ask. ‘What’s the best kept secret in diabetes?’

I was startled. What an interesting – and frankly brilliant – question. I’d never been asked that before and I wanted to think about it a lot. Poor woman – I’m sure that she just wanted some sort of quippy response and to be done with it so we could go home and eat dinner.

‘Wow!’ I started, excitedly. ‘I love this. Are there any secrets to diabetes?’ I started a checklist, going through some ideas.  ‘Is it peer support? For some reason, a lot of people don’t know just how widely available this is. Or maybe it’s how people can drive their own healthcare by setting the agenda. I frequently have people tell me that they just do what their doctor tells them (or rather, say they will) because they didn’t realise that healthcare could be an open and joint dialogue. In diabetes, maybe it’s all the clandestine DIY stuff that is going on which is so apparent to those of us who play on Facebook and Twitter, but maybe not to those who are not online as much. I know it’s NOT cinnamon. Actually – maybe it’s the whole thing about how when living with diabetes, or other chronic condition, our mental health is rarely taken into account, so perhaps understanding that and being referred to relevant services is the secret. It happens to so few of us…’

I stopped, because I could sense that there was so much I wanted to say, but I truly didn’t have an answer. ‘I don’t really know,’ I sighed. ‘I wish I did. I wish there was one…’

We said our good byes and I started to walk away before the doctor called after me: ‘You know what the best kept secret in diabetes is?’

I spun around. ‘What?’ I asked. I admit that I was hoping for a key that was going to unlock the mysteries of diabetes and suddenly make it a lot easier to live with.

‘You,’ she said. ‘And others like you. If only doctors like me took the time to listen to you all we would know a lot more and probably do a much better job.’

I smiled at her. ‘We’re not really a secret,’ I said. ‘We’re actually quite out there. You’re just not looking in the right places. Or asking the right questions.’

I gave her a little wave and left the room.

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Recently, I was tagged in a tweet that asked for my thoughts on a discussion that was already in progress, and had started with this tweet from diabetes consultant Pratik Choudhary:

(Click for original tweet and to read discussion)

It’s a long thread (that seems to still be going), but it is worth a read to see some different perspectives and thoughts on the role of psychologists as part of the diabetes multi-disciplinary team.

I think that Pratik’s original tweet is right in that diabetes clinicians have a role to play in acknowledging diabetes-related distress and working with PWD by asking the right questions.

But just asking isn’t enough and rarely actually gets to the root of it all. Because unless we are asked and can understand why we are behaving a certain way, we don’t know how to stop it. Why do we feel guilty? Why do we feel that we need to be perfect in the first place? Why do we base so much of our own worth on numbers (TIR or A1c)?

But in the real world, I don’t think these questions are being asked, and there are myriad reasons that’s the case. Some clinicians wouldn’t have a clue what or how to ask. And then if they did, they’d struggle to know what to do with the answers. Only recently, I heard of a diabetes educator say ‘You just have to do it’ to a PWD who had opened up and said they were really not checking their glucose levels because they felt ‘over’ diabetes and simply unable to manage its significant daily tasks.

I nodded in recognition when I heard this story because that was me for the first three and a half years of living with diabetes.

Also, sometimes PWD feel too ashamed and guilty to admit the distress they’re experiencing to their HCP, instead promising to do better and check more and respond accordingly.  But do nothing of the sort.

That was me, too.

In the limited time we get with our diabetes HCPs, we seem to have a focus on numbers and basal rates and tweaking X and Y to make Z better. We are in diabetes mode because we know those minutes are precious and diabetes is what we are meant to be focusing on – even though diabetes may be so far down our list of concerns we sometimes (try to) forget we even have it.

Yeah. That has been me too.

Even though I have an endocrinologist who asks the right questions, doesn’t fill those silences where I am looking for the right words, is encouraging and supportive and never judgemental, and understands that diabetes-related distress can be paralysing, she was not who I needed to get through those times. I love that she knew that.

She also knew that no matter how many SMART goals we set together, and even if I said that I would be able to do them because I could see they were achievable and completely not unrealistic, until I had a mental health professional work with me there was no way I was going to do them.

One of the first things she did when I started seeing her seventeen and a half years ago was refer me to a psychologist. The guilt that I was feeling about the imperfect numbers – or the lack of imperfect numbers because I was barely checking them, was steeped in a complex and convoluted mess. I needed a mental health professional whose expertise was to help guide me through it all and show me how to get things sorted.

THAT was what I needed at that point in my diabetes life…and numerous other times since then too.

For me, there has always a lot to the cause behind my diabetes-related distress, and speaking with many of my peers, they would say the same thing. I didn’t understand that it was okay for me to grieve my life before diabetes. I could remember it well – the days of not needing to think diabetes, breathe diabetes, sleep diabetes. My life was different post-diagnosis, but the recurring messages I’d heard was that diabetes wouldn’t stop me and I should just get on with life.

Well, I have done that. But that doesn’t mean I didn’t need time to mourn the days where I didn’t do all that. Having someone help me where diabetes now fit in my life was essential to clearing a path for me to actually make diabetes happen. And for the record – I’ve needed counsel with this several times because diabetes’ place does change around depending on other things in my life.

So where does a psychologist fit in the diabetes health professional equation?

For me, it must be as part of any multidisciplinary team.

I’m not sure that the day I was diagnosed would have been the right time for me to have an appointment with a psychologist (but let’s be honest, it would have been no less helpful that the dietitian and her rubber food moulds), but I certainly do wish that I’d know that having someone to talk about my mental health was a sensible thing for when I  needed it, and given clear directions about how to go about getting an appointment. I was told about the eye specialists and podiatrists that would be part of my future team, but no one thought to mention a mental health professional.

It shouldn’t have taken almost four years – four very difficult years in a lot of ways.

Over the years, seeing a psychologist has helped me with my diabetes management enormously. Those times when diabetes has terrified me to the point of paralysis and inactivity, the times where I wanted to blame diabetes for other things going on (because it is there and I generally don’t like it so it’s convenient to point my finger at it!), the times when the uncertainty of diabetes and the fear of what lies ahead, or the times when life overall has felt just too big and scary and diabetes just doesn’t get a look in … I have benefited from having a mental health professional to work with. In fact, I doubt that I would see diabetes is the way I do now without that support.

There is so much more to managing diabetes than simply doing diabetes. And there is more to diabetes distress than just acknowledging that it is there. Having diabetes specialists who understand about distress is valuable. But I really do think that understanding it ourselves, being able to identify warning signs, and developing sustainable strategies to deal with it any time it comes back needs the expertise of a psychologist.

I walked into my endo’s office yesterday, and was greeted by the receptionist with a smile (and by name). ‘You’re next; shouldn’t be too long,’ she said to me.

I was especially grateful for the welcome I received yesterday. Because earlier in the day I’d started the search for a new GP. It hadn’t gone well.

My quite awesome GP who I’d been seeing for almost twenty years decided to move interstate which is incredibly inconvenient. For me. But apparently it was a good opportunity for his family, so off they went and now I am left GP-less. Because, yes, it’s all about me.

So, I’ve been looking and asking friends in the area who they see and if they would recommend them. There is a woman at the same practice as my previous GP who I quite like, and a few people had suggested. I’d seen her a few times when my GP had been on leave, and she knows my convoluted medical history. But when I rang for an appointment the other day, I was told she was booked up until March. M-A-R-C-H. Over a month away. I was told that I could call at 8.20 the next morning as they keep a few on-the-day appointments, but there was no guarantee I could see the GP I wanted.

I sighed and said that I’d call back the following day. And when I did, there were no appointment times with the doctor I wanted. Continuity of care is important to me – I don’t want to have to explain the CGM on my arm, the pump down my bra, the way I manage my diabetes each time I need a quick visit to the GP for a UTI, or sore throat that won’t go away.

I decided that I probably needed to find another doctor, so I called another clinic that had been recommended to me. I didn’t speak to the receptionist. But I did hear the hold message.

Firstly, the calm voice on the recording told me that the doctors at the clinic all had lots of experience and were there to serve the local community, and that the whole clinic operated under a philosophy of patient-centred care. ‘Excellent,’ I thought. ‘That’s a buzz phrase I like. Good start’.

But then came a shopping list of things that callers should know before pressing hash to speak with someone.

  • Appointments can only be made before midday. If you call outside those hours, you will be asked to call back the following day
  • Same day appointments can only be made between 8.30am and 9.30am, although most will be taken by 8.45am
  • Doctors generally will not take or return calls from patients unless this has been agreed upon during an appointment
  • No results given over the phone by doctors (or anyone else); you need to a follow up appointment
  • No bulk billing is offered (even for people on a HCC)
  • If you are late, you will miss your appointment
  • You will not be contacted if the GP is running late
  • But you should call to see if the GP is on time
  • Missed appointments (by the patient) incur a no-show fee
  • If you want a referral (even to an existing specialist) you must make an appointment to see the doctor
  • Ongoing referrals will not be provided
  • If you want a prescription (even for an existing medication) you must make an appointment to see the doctor.

After listening to the message three times – just to make sure that I had everything correct – I hung up. There was literally not a single thing on that list that could be considered to be patient-centred.

Before I go on, I want to say that I know that GPs are overworked. I know that they are underpaid. I know that there are too many people trying to get into see them, and their time is precious. I can’t even imagine what it takes to run a GP clinic – or a clinic for any discipline really. I assume that there will be some using the service who have unreasonable expectations and demand that a doctor be available to them at all times of the day and night. So, rules are needed to deal with those sorts of people.

I am not one of those people. I am, however, a person who lives with type 1 diabetes and sometimes, I need a prescription for insulin because I thought I had another repeat left, or my current prescription has expired, or I lost the last one, or the littlest dog ate it (hasn’t happened, but wouldn’t put it past her). Or I need a referral to one of the other specialists I get to see semi-regularly (such as my dermatologist for psoriasis, rheumatologist for psoriatic arthritis, OB/GYN for gynae stuff etc.). And I definitely appreciate an ongoing referral, because, you know, diabetes doesn’t go away and I will need to see my endo forever (or until she retires, at which point I’ve decided I’ll give up this diabetes palaver too).

I don’t think these are unreasonable requests to have of a GP clinic. I don’t expect to be bulk billed. I am not asking for a diagnosis over the phone; or a phone consultation. But surely, it’s a waste of time (mine and the doctor’s) for me to need an appointment for a prescription for a drug that I will need to take FOREVER, and dose myself. Or for an annual referral to a doctor I’ve been seeing for over seventeen years for a health condition that I’ve had for almost twenty-one years. Or to be told that my A1c (or whatever else is being checked) is in range.

I wrote last week about how we get burnt out with needing to be advocates for ourselves. I felt a wave of that hit me as I listened to the list of rules from the GP clinic I will not be going to. I don’t want to start by giving a medical history … and then needing to beg for a little flexibility in their rules.

Does this make me sound like a princess? Maybe. Does it make me sound unreasonable? Perhaps it does.

But healthcare settings cannot have it both ways. They cannot promise that they are patient-centred if they are actively setting rules that make it more difficult – and exhausting – for us to live with a chronic health condition.

One day, I won’t be anxious when waiting to see my lovely endocrinologist. Today’s not that day.

Last November I spoke at the HIMSS (Healthcare Information and Management Systems Society) conference in Brisbane (and wrote about it here). I was only flying up for the day and my schedule had been diligently planned but the HIMSS team, utilising every single moment I was at the conference centre. I was in two sessions, but before that, I was to be filmed for HIMSS TV.

Best paid plans, and all that – my flight was delayed. By quite a bit. The interview would need to be rescheduled. I landed, unsure if I would make it in time for my first talk, and begged the taxi driver to do all he could to get me there on time. The man was a miracle worker, delivering me to the conference centre five minutes before my first session started, and I walked onto the stage with the sound guy’s hand halfway down my dress (the back of it, settle down), mic-ing me up as the chair was introducing the session.

As soon as the second session was done, I was whisked away for the interview. We were running through the conference centre halls (this time the sound guy was trying to retrieve the mic he’d affixed on me earlier – we’re now very good friends), to get to the interview area.

I had literally 15 minutes before I needed to get into a cab to head straight back to the airport for my flight home, but the HIMSS team was determined to get me chatting on camera. Good thing I talk so fast.

Also, good thing that I was asked to speak on a topic that I could happily blab on about for hours. While underwater. I was there to speak about person-centred care in healthcare.

I find it a little odd that the title of the interview is ‘Disrupting diabetes treatment with a person-centred approach’, because we have been talking about this for a long time. This isn’t new; it’s not disruptive. But clearly, it’s still something that we need to be talking about, because I think that there is far too much lip service and not enough action when it comes to patient-centred care.

I’d completely forgotten all about the interview until someone tagged me in a post on Twitter and LinkedIn when the interview was launched just after New Year. You can watch it by clicking on the image below. I talk very fast…I had a plane to catch.

 

The other week, as I sat on the stage as part of a panel session at the HIMSS conference in Brisbane, a term kept getting thrown around that had me squirming in my seat. It was not said with any malice – in fact I believe it was being used under the perhaps misguided idea that it is represents positive and empowering language. But as I sat there and the term was being used, almost with abandon, I knew that we were going to have to have a chat about it. As per exhibit A:

Exhibit A

Activated patient? No. Just no.

When the moment was right, I took a breath. I’d been asked to comment on the current My Health Record situation, and whether I thought it was something that would benefit people living with chronic health conditions. ‘Before I answer the question, can we just consider the term ‘activated patient’ and how it is being used here today – and often in other contexts too. I’ve heard from people on the stage and in the audience use the term ‘activated patients’. I’m really not a fan of this term. In fact, I think it is really quite problematic.’

Activation is something that is done to something. Think Pete Evans and his activated nuts. Or yeast when making bread or cinnamon buns. Or my pink debit card that came in the mail with a sticker across the front telling me how to activate it. Pete Evans’ almonds were just passive little nuts before he decided to activate them. And before the warm water was added to the yeast, it was just powder sitting in a sachet. My pink card was simply a piece of plastic before I called a number, pressed a few other numbers once the automated message was played and agreed to a heap of terms and conditions, making the card able to work.

Those inanimate objects had something done to them to become activated – it didn’t happen on their own. Beforehand, they were passive.

I was not ‘activated’ to become a participant in my own healthcare. I was not given permission to lead the agenda of how I want to engage. I chose the people I would see; the health service I would use; the devices I wear strapped to me. I have never been a passive participant in my healthcare – or any other aspect of my life, for that matter. I have always been active. Of course there are times that I struggle with motivation and may be less active and pro-active, but getting out of those times was never an exercise in activation by others.

The idea that people become activated because they are given the opportunity reeks of the typical paternalistic attitudes that are still rife in healthcare.

Look, we can have a long discussion about the ‘consumerisation’ of healthcare, and how that is what is to blame for terms such as this. It is business lingo and while many think it probably refers to people being in charge of their health, it actually suggests the opposite.

Words that suggest something is being ‘done’ to a person utilising the health system are not empowering. They are not putting the person at the centre. They don’t indicate that the person is driving their care.

The term ‘activated patients’ provides a narrow interpretation about how a person is in charge of their healthcare, because it always is used to highlight people who are loud advocates for themselves, walking into every appointment with a list the length of their arm of things to discuss, therapies they want to use. But not everyone wants to do healthcare that way. Just because someone prefers – and chooses – to have a healthcare professional drive the direction of their care does not necessarily mean they are not ‘activated’.

Also – consider this: if a person can become an ‘activated patient’, that means there must also avenues for them to become a ‘deactivated patient’. That’s certainly not being person-centred. In fact, suggesting that we become something only because we have been given the right to be that way is the opposite of person-centred.

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. 

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. 

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