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Have you ever heard of an ‘Everesting Challenge’? No? Neither had I until recently. It involves a cyclist climbing a single hill the number of times that’s required to reach a total ascent of 8498 metre to equal Mt Everest. Oh – it gets better. It has to be done in a single ride. It’s known as one of the toughest cycling challenges in the world and I’m exhausted just writing about it. Now I know what it is, I can confidently say that I will never be completing this challenge.

But Neil McLagan is, and he is doing it for a really good cause. He will be raising funds for Insulin for Life (IFL) Global. I’ve written about IFL Global before, and have done some (volunteer) work before, promoting what they do.

As a refresher, IFL Global is a not for profit organisation, raising awareness of the lack of insulin and diabetes supplies in developing countries. The organisation collects and transports insulin and supplies and then distributes them to clinics and health professionals in these countries, as well as offers a complications screening program in places where this simply does not happen.

IFL Global’s mission is that no one should die because they can’t afford or access insulin. Their efforts save lives and help those with diabetes survive and thrive in their communities.

Obviously this is something that I will support – not by starting to do extreme cycling, but by promoting those doing it. And that brings me back to Neil McLagan.

Neil will be undertaking his ‘Everesting Challenge’ by climbing Admiral Road in Bedfordale, Western Australia more than eighty times. Apparently, that is going to take him more than eighteen hours. It’s not the first time that Neil has undertaken this sort of challenge. Last year he rode solo and unsupported from Sydney to Perth raising funds for another diabetes cause. Over twenty days, he spent a total of almost 180 hours on his bike, riding a total of 4011kms (almost 2,500 miles). He says that his ‘Everesting Challenge’ will be one of the most physically and mentally difficult single day challenges. He’s not kidding!

Oh – did I mention that Neil has type 1 diabetes?

He is hoping to raise AUD$20,000, along with a lot of awareness about Insulin for Life Global. Without the work they do, a type 1 diagnosis for many people in the counties where they have a presence would almost certainly mean a drastically shortened life.

This is where you can help.

Look – if you’re inclined to get on a bike and ride it for the equivalent of climbing Mt Everest while fundraising for IFL Global, all the power to you. Please let me know and I promise to throw more than just a couple of bucks your way.

But if you’re like me and would prefer to sit in a café reading about people like Neil, you can still help.

You can make a donation by clicking here. Every donation counts – don’t ever think that $5 won’t make a difference.

And you can follow Neil’s story by liking his Facebook page here and following his adventures, and sharing it with your friends.

Please do consider making a donation to Neil’s efforts. Insulin for Life Global is truly a very important cause and is making a massive difference to the lives if people with diabetes.

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My third ATTD, and as soon as I started reading through the program, flagging the sessions I planned to attend and the technology I was keen to get my hands on and learn more about, a familiar feeling started to settle over me. It was there the first time I attended the conference and again last year.

And that feeling is that this conference, more than any other, reminds me just how unlevel the diabetes landscape is. With the shiniest of the shiny and newest of new technology and the most impressive treatment options available to people with diabetes on show, the vast gap between the haves and have nots is stark.

I was not the only person to acknowledge this. My first full day in Berlin saw me in an advisory committee meeting with diabetes advocates from across Europe, and when asked about the most pressing issues in diabetes, access was at the top of the list for every single one of us. Most (if not all?) of us in that room live in places with outstanding funding and reimbursement programs for diabetes drugs, technology and education – having to go without or ration insulin isn’t something we have ever needed to consider. Even those of us self-funding CGM are in a position of extreme advantage to be able to cover the significant out of pocket expense. But we all know that for millions of people across the world, this is not the case.

And then, later in the week at the Ascensia Diabetes Social Media Summit, another issue that came up again and again was choice. Choice refers to range of factors in diabetes. Choice of the type of technology we use, including the different brands; choice of the healthcare setting we feel best suits our brand of diabetes; choice of the specific healthcare professionals we see. It is also the freedom to be comfortable with our choice of technology, not feeling we need to conform to what others believe is the right thing.

But just how real is the whole idea of choice in diabetes? And when it comes to technology, how much of the decision about what we are using and how we are managing our diabetes is truly our own?

When access to basic education and treatments is severely limited, there is rarely any choice at all. In some places, a diabetes diagnosis is life and death, and surely in those cases all that people are choosing is life. How they manage that is probably not contemplated at all. In countries where diabetes does actually equal a death sentence, no one is debating whether TIR and A1c is how they would like to track their diabetes management.

But we don’t need to look to countries where outcomes are still so desperate to see lack of choice. Just this week, a very distressed mother of a young child with diabetes called me because they had just been told they were not permitted to use the pump they had chosen after careful deliberation and research.

This isn’t uncommon. Diabetes clinics across Australia make it difficult for PWD to be able to use the technology we have decided is the best choice for us. Sometimes that means not being able to use the specific technology we want (i.e. refusing to sign the necessary paperwork for a pump), or it could mean not being given the right to choose the brand of device we prefer.

At ATTD, I frequently heard about how healthcare is being transformed, and that may be true for those of us not disadvantaged by the country where we live and are trying to access care. We should celebrate the advances being made and the better outcomes so many of us have seen. But at the same time, we need to find a way to not get so far ahead of ourselves that we leave the most vulnerable further and further behind.

Click for original tweet.

It’s March, which means a few things: It’s now Autumn in Australia; Easter eggs are flooding supermarket shelves; and Spare A Rose is over for another year.

I am very, very rarely lost for words. I usually have a lot to say (even if I’m the only one who want to hear it). I can speak underwater. But throughout this campaign there has been moment after moment where I have been rendered speechless as the generosity of people has been on display. No one has made a big deal about it – they have just wanted to contribute to a campaign because they could and they understood its importance.

This year, we really took Spare A Rose back to the community where it all first began. We wanted to use that grassroots support from people who truly comprehend what it would mean to not be able to easily and affordably access insulin and diabetes care. All funds raised by Spare A Rose – every last cent – goes towards Life for a Child to improve access to young people living in places where it is difficult.

Last week at ATTD, every time someone spoke about #SpareARose, those around them listened and then asked how they could help. Individuals with diabetes, diabetes on- and offline community groups, people from other diabetes organisations and industry stepped up to make donations, share information, spread the word.

Our community was stronger and louder than we’ve ever seen for this campaign and as more people got on board, we kept wondering just how close we’d get to that aspirational target we’d set – $50,000. It seemed impossible when first suggested on a conference call – almost as a whisper because it seemed so audacious.

We shouldn’t have underestimated the diabetes community, because not only did they reach it, they smashed it.

We got a wee bit silly and pulled the #SpareAFrown stunt, hoping to get a little attention and a few donations, but actually it blew up. (I think Grumps is a little scared of what he’ll be asked to do next year to encourage donations. Suggestions welcome. Pink tutus have already been proposed.)

The money raised means that nine hundred and thirty nine young people with diabetes will be provided with life-saving insulin for a whole year. When all is said and done, that is all that matters.

Thank you to everyone who supported #SpareARose in 2019. We will be back in 2020 bigger and better. The plans already being hatched have one goal only: more roses spared; and many, many more lives saved.

 

Let me tell you what is worse than jet lag. Jet lag combined with food poisoning. These are the two extra circles of hell Dante forgot about.

While I am recovering and trying to get my body to accept coffee again, here are some photos from last week’s ATTD conference which was in equal measure amazing, overwhelming, frustrating, intimidating, brilliant and exhausting. I’ll explain more in coming posts, but for now, enjoy the images.

How to deal with jet lag when arriving in Europe #1: night time walk to major tourist site and be amazed.

How to deal with jet lag when arriving in Europe #2: find (half) decent coffee.

How to deal with jet lag when arriving in Europe #2.1: drink all the coffee.

And then drink some more.

#docday is always a highlight. Little dogs called Jamaica make it even better. (Jamaica on the left; Bastian on the right.)

Hello Solo… New pumps headed our way.

MySugr is ALWAYS on message.

Flavour of the conference #1: DIYAPS

Flavour of the conference #2: Time in Range

Vegetables. I craved them.

Because there were so, so, so many dense carbs!

Not that I was complaining. (Especially when mini doughnuts came in Diabetogenic colours!)

Oh – did I say that #SpareARose was mentioned? A lot?

Such as at #docday. (Grumps looking especially grumpy because I’d just announced #SpareAFrown.)

And then? Then there was the smile-a-thon, as we smashed through target after target.

Next week, I’ll go into detail about some of the different sessions, highlights and satellite events I attended. It was a frantic few days – so worthwhile in every possible way. And as always at these conferences, finding those who live diabetes – themselves or with a loved one – provided the necessary grounding throughout the conference. This year, that support was even more pronounced with every single person who was asked to step up to promote #SpareARose doing so in spades. This is all the community. That is what it is all about…

DISLCOSURE

I attended the ATTD conference in Berlin. My (economy) airfare and part of my accommodation was covered by DOCLab (I attended an advisory group meeting for DOCLab), and other nights’ accommodation was covered by Roche Global (I attended the Roche Blogger MeetUp). While my travel and accommodation costs have been covered, my words remain all my own and I have not been asked by DOCLab or Roche Global to write about my attendance at their events or any other aspect of the conference. 

Although Valentine’s Day is over and florists are back selling red roses at a reasonable price, the Spare A Rose, Save a Child campaign is still going. We run until the end of February which means that there are still ten days to go.

The tally for 2019 is already looking strong. We have hit just over $28,000, and we know there is another $8,000 or so pledged from a friend of the campaign, so we’re sitting around $36,000.

And that brings us to today’s blog post which actually begins its story back in August last year, and it goes like this…

One afternoon, I was working from home and an email came in from Scott Johnson. Scott is awesome and I adore him; and was intrigued by the subject title: ‘An idea from my dad’. Scott’s dad (who is clearly as awesome as Scott) did indeed have an idea. He thought that a great way to get people to donate to Life for a Child would be to get a smiling photo of the frowniest of them all in the DOC – The Grumpy Pumper. And I was charged with the task of convincing him to do it.

To be honest, I thought that this was not going to be an easy ask. There are literally hundreds of photos of Grumps online sporting his trademark frown. (See exhibit A) Convincing him to smile – and smile in a photo for all to see – was not probably going to be met with a lot of resistance.

Exhibit A

The conversation went like this:

Me: So Grumps, Scott’s dad thinks that you smiling in a photo should be used as an incentive to get people to donate to Life for a Child.

Grumps: Are you fucking joking? (Pause) Oh, okay. I’ll smile, but don’t get used to it.

We kind of forgot the idea, but with #SpareARose in full swing and the 2019 tally being so close to the $40k mark, we thought that now was the time to bring out this idea and see if it has legs.

Here is the deal. If our tally hits $40K by Friday night (Berlin time), Grumps is going to #SpareAFrown, and get his smile on at the MySugr event that is happening at ATTD.

This is where you come in. #SpareARose is a community initiative. It was started and is run by the diabetes online community. It is owned by us and it is a wonderful example of the community taking care of one another around the world. Grumps is a part of this community, and a part of the #SpareARose family, and he is a grumpy bastard. All good reasons to make a donation.

We’re calling on the community to step and donate to get us to $40K. If you have already donated, thank you. Is there any way you can throw in another $5? If you have been meaning to donate, but haven’t managed to do it yet, please do it now. Share the donation link with everyone you have ever met.

And share the #SpareAFrown idea, to get Grumpy to use muscles in his face that just don’t get a work out and help us get to $40,000, all of which will be donated to Life for a Child to provide insulin to children who would otherwise not be able to access it.

Let’s get Grumps to #SpareAFrown to save a child.

Click on the rose to donate.

DISLCOSURE

I am currently at the ATTD conference in Berlin. My (economy) airfare and part of my accommodation has been covered by DOCLab (I attended an advisory group meeting for DOCLab), and other nights’ accommodation has been covered by Roche Global (I will be attending the Roche Blogger MeetUp). While my travel an accommodation costs have been covered, my words remain all my own and I have not been asked by DOCLab or Roche Global) to write about my attendance at either events. 

I was up bright and early this morning, rushing around to get ready for a flight to Brisbane. ‘Happy Valentine’s Day, babe,’ I said to Aaron as I was pulling a dress over my head, brushing my teeth and checking to see what time the cab was arriving. ‘I didn’t get you anything.’ This announcement isn’t a symptom of twenty years of marriage; it’s not even because we are disorganised; and it’s not because we don’t celebrate Valentine’s Day (although, to be perfectly honest, before getting involved in #SpareARose, we really didn’t even acknowledge this Hallmark day).

These days, Valentine’s Day is a thing in our house, but purely because we’re all about spared roses and empty vases. And this year, Spare a Rose cookies.

Flowers die, children shouldn’t. It’s tragic that we even have to say that in 2019. But we do. Because there are still parts of the world where a type 1 diabetes diagnosis is a death sentence due to lack of access to insulin, and basic diabetes supplies and education.

If you can, please make a donation to #SpareARose. You money will go to Life for a Child and provide insulin to a child with diabetes. Don’t take my word for why this is important; here is Brandon telling his story and sharing how donations such as those raised as part of #SpareARose have helped him to fulfil his dreams. Happy Valentine’s Day.

 

Last week, the BMJ published a piece I wrote with the Grumpy Pumper. It was part of their ‘What Your Patient is Thinking’ series which includes stories from people sharing their experiences of living with a variety of health conditions, or using health services.

We wrote about the intersection between language and diabetes-related complications and why language matters so much any time this topic is raised. This is our latest piece on the issue (read the PLAID Journal article here, and something we wrote for diaTribe here). We may appear to be one trick ponies, but it seems the appetite for this issue has not in any way diminished – which is good, because there’s lots more to come! (We’re not one trick ponies – I for one can talk for hours about why the fax machine should be made extinct in healthcare.)

It’s been fascinating – and a little overwhelming – to read the responses to the article after it was shared on a variety of social media platforms at the end of last week, and then again over the weekend. It’s also been heartbreaking when people have told stories about how HCPs have spoken about diabetes-related complications in ways that have had negative effects.

It’s refreshing to see many HCPs (including those from outside the diabetes world) sharing and commenting on the article. Much of what we have written is applicable beyond diabetes. It doesn’t matter what health condition someone is diagnosed with; everyone wants to be treated with kindness and compassion and to not be blamed or shamed.

A couple of HCPs have said that after they read the article, they will now consider changing the way the speak. I love this piece from a CDE in the US who said that she honestly thought the words she was using when discussing diabetes-related complications were reassuring until she read our perspective, and now understands that there are better ways to frame the conversation. We only hope that this will lead to PWD feeling less judged and more supported, and not afraid to talk about what is still a taboo topic for so many.

The diabetes and language landscape is broad. I know that there are many who roll their eyes and say that actually, language doesn’t matter, and perhaps we should be focusing on more pressing issues, but I wonder if they are perhaps focussing on issues that they don’t think are really important.

But there is a lot more to this issue than, for example, the debate between being called ‘a person with diabetes’ or ‘diabetic’ – or if it even matters. Regardless of what the specific issue is, we are hoping is that people understand that words really do matter; they have far-reaching consequences; they determine how people feel about their diabetes; and that the right words have the potential to make people feel better equipped to manage their diabetes as best they possibly can.

Please read the BMJ article – it is freely accessibly – and share it with your networks. If you have diabetes, take a copy to your next HCP appointment and leave it for them to read. The way that we make real, sustainable change is to keep pressing a point, and explain why it is important. Hopefully this piece has gone some way to doing that.

The illustration that was commissioned for the print version of the article. Artist Rose Lloyd did such a great job of getting across the messages in the article!

Have you noticed how the social media feeds of many folks in the DOC are starting to look a little rosy? It’s a veritable florist out there at the moment, with lots of people talking and sharing information about #SpareARose.

I’m resharing is a recycled vlog from last year where I suggested that we try to get #SpareARose outside of the DOC and into the conscience of a broader audience. Watch my over-caffeinated rantings…and then tell someone about #SpareARose and ask them to donate.

The address for donations is: www.LFACInternational.org/SpareARose

(If this is your first time here, you may be wondering what’s #SpareARose? It’s a campaign that was developed by some pretty amazing advocates from the diabetes online community back in 2013. The idea is simple: send eleven roses instead of twelve to you love this Valentine’s Day and donate the money you saved (about USD$5 / AUD$7) to #SpareARose. Your donation will go directly to Life for a Child and provide a month of life-saving insulin to a child with diabetes. Spare a rose, save a child. Sounds like a pretty special Valentine’s Day gift to me.)

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.

I read a powerful piece yesterday by Canadian writer, speaker and health advocate, Sue Robins. She has years of experience as a family advocate (her son has Down Syndome), and then, after being diagnosed with cancer, a patient in the health system.

Sue’s post was about her decision to withdraw from the world of patient engagement. Clearly, it was not an easy decision, but one that she felt she needed to make for her own wellbeing. No one could ever blame her.

So much of what I read in Sue’s piece resonated. The desperation she beautifully and eloquently outlined is something that I keenly have felt (feel?). And I know it’s not just me. I see that in the eyes of others trying to elevate the role of ‘patients’ and to ensure that we are truly listened to, and treated with the respect, compassion and kindness we deserve, all the time.

I get the constant battle that we have – and it does feel like a battle a lot of the time. On one hand we feel so invested in what is going on because it is happening to us directly. How can we feel any other way?

If we are living with the condition, it is personal beyond measure. If we are caring for someone and advocating for them, there is a different sense of pressure and investment. And if we decide that this is ‘a calling’ and do it professionally, there is a different again as we try to work within different parameters – the need to keep within the realms of what our work allows, and the less structured realities of actually living with a health condition.

For me, there is a mixture of the professional (because of my job) and the personal (because of my pancreas). I feel the push-pull of that daily.

I get tired. I get overwhelmed. I get discouraged. I get disengaged. I get disheartened.

I feel the system is broken and I feel how that goes on to break people. I have found myself at that breaking point on more than one occasion when the system is failing me, and equally, when I see it failing others and I can’t help.

Operating in a network with so many stakeholders is always difficult, but when each of those stakeholders seems to have a different mission, it becomes impossible. Because as much as we want to think that everyone’s mission is for the best outcome for the ‘patient’, I don’t know that that is necessarily true.

What I want when I walk into a hospital or a clinic appointment (or a GP appointment, pathology room, specialist check-up, operating surgery, or any other healthcare setting) is different to what the hospital administrators want, or the HCP, or policy makers, or any other stakeholder. Despite the claims of mission statements everywhere, it is undeniable that it is not the persons in the so-called person-centred care that direct outcomes.

Every single story we hear where someone is treated poorly, isn’t listened to, is blamed for their condition, is not given time or space to voice their needs, feels uncomfortable with how they have been spoken to, is another example of the system not being person-centred.

In diabetes, it could look like this:

  • A person not being given the option of using the device they want to manage their diabetes. I repeatedly hear people say that they were told they could not use the pump they want to use because their clinic doesn’t offer that one.
  • A person who is just diagnosed with type 2 diabetes, or needing to go on insulin to treat their type 2 diabetes being told that it was through their doing that this has happened.
  • It could be not being able to manage our diabetes as we do at home when we are in hospital – insulin is removed from us, pumps are taken away, we are not allowed to use CGM in hospital and must go back to using blood glucose monitoring, not being able to eat the foods that we want because we must have the ‘diabetic menu’.
  • A diabetes-related complication diagnosis is met with judgement instead of information about how to move forward.
  • A person with diabetes being denied the time they need to speak about what is really concerning them, instead appointments following a formula that is unable to be adjusted.

It also looks like being excluded from the consultation, development, coordination and evaluation of programs, services, activities and resources that we are meant to use and find useful.

I don’t say these things because I think HCPs are out to get us, or that hospital admin teams are trying to make our lives hell, or that policy makers don’t care. I understand that everyone is working in trying times with funding cuts that are crippling the system. I know there are guidelines that need to be followed.

But at the end of the day, diabetes is our life. Melinda Seed has said ‘We have skin in the game’, a term I use when talking about the safety of using DIYAPS. We mean it literally as well as figuratively.

Again – I am not in any way minimising the commitment and dedication that HCPs have to working in healthcare. I genuinely believe that almost all are there trying to improve our lives and help us make sense of what is going on in our bodies.

But our desired outcomes are different. My KPIs when I walk out of a HCP appointment include feeling positive, feeling listened to and knowing how to move forward until my next appointment. I need to feel that I am equipped, motivated and encouraged.

We can read stories like Sue’s and shrug and say that she is burnt out. Burn out is almost inevitable when living with, or advocating for someone, with a life-long condition. But we shouldn’t be getting burnt out by the system. We get that enough when our bodies decide to start working against us. We need the health system to be working for us. And with us.

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