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Last night, Aaron and I joined a group of friends at the beautiful Sun Theatre in Yarraville for a ‘cinematic experience’. Harking back to the ‘good ol’ days’, we saw a film shot in 70mm Ultra Panavision with an overture at the beginning, an intermission of exactly 13 minutes in the middle and a souvenir program to take home at the end. (We’ll ignore the fact that rather than watching Ben Hur, introduced by Bill ‘Golden Age of Hollywood’ Collins, we were watching Quentin Tarantino’s eighth movie, ‘Hateful Eight’ (H8ful Eight??? Hateful 8???) with all the gore and violence – yet surprisingly still so much grace and beauty – one has come to expect in a Tarantino film.)
Often, there is much chatter about the ‘good ol’ days’. I get it. It was a time where things seemed simpler: kids were kids, adults were adults and everyone knew where they belonged. Milk came in bottles with cream on top….And I walked ten miles to school and twenty miles home, all uphill.
We can look back nostalgically at different periods in history. And it’s funny how history repeats itself. I remember hearing my father telling me how lousy the 1980s music I loved was compared to the music he loved. And yet his favourite music – the Beatles, Frank Sinatra, Simon and Garfunkel – would have had the same said about them. I try to catch myself before I criticise the trash music daughter is listening to now, because I remember how annoying it was (and how distressed I was) when my dad criticised Morten Harket.
Last week, Aaron got into a Facebook discussion that started off being about music and somehow ended up not being about music. The person he was ‘speaking’ with was saying that everything was better in the ‘olden days’.
‘Everything?’ asked Aaron
‘Yes,’ she replied. ‘Everything!’ She then went on to explain what she included in her ‘everything’ – music, food, medicine…
He quickly jumped in and pointed out that thanks to advances in medicine, his wife is still around. The olden days were really not all that great for those living with a health condition such as type 1 diabetes.
Perhaps because I am a beneficiary of all that the ‘modern era’ has to offer, I have no nostalgia or desire to go back in time. Because for me, along with sentimental thoughts of kids playing in the streets until dusk – and playing meant being outside, not sitting in front of a console – and cooking meant making foods from scratch and a telephone call was something made from a phone with a chord, there would be the practicalities of boiling syringes and sharpening needles and an inability to accurately measure BGLs and a life without diabetes technology. Bygone era? No. Be gone!
I would take the modern era and all its so-called short comings in a heartbeat over the ancient era of medicine! Through our rose-coloured glasses we forget that there were days before vaccines and days when life expectancy was shorter. We forget that there were not tests or screening to identify different conditions, that mental health was rarely, if ever, discussed. We forget that only 94 years ago – not that long ago – there was no medication to treat someone with type 1 diabetes.
So with all this in mind, read what is coming next. Here is an update on a couple of the many artificial pancreas projects happening today.
I want a cure as much as the next person. But in the meantime, keep the DTech coming. Please.
When I look back at the numerous (i.e. far too many) encounters I have had with healthcare professionals, some stand out. Fortunately, a lot of the time it is because the care I have received has been outstanding and delivered by wonderfully caring and respectful professionals. But there have been times where the experience was no so good.
One of the stories I tell when speaking to medical students about what makes for good communication comes from a very difficult time. I was in hospital with terrible stomach issues. A new doctor had been referred to me and for the ease of this tale, we will call him Professor Poor Communication Skills – Prof PCS for short.
Prof PCS was an expert in his field and by the end of my time in hospital, I actually quite liked him. He was loud and direct and I appreciated his no-messing-around attitude. Plus, he worked out what was wrong with my stomach, stopped the pain and got me out of hospital.
However, it took a while – and a little bit of coaching – for me to come to like him.
When Prof PCS came to see me for the first time I had already been in hospital for about a week. I went through what had been going on and he ordered a few blood tests and x-rays. With that, he promised to return the following day with the results. I didn’t really mind the way that he blustered in and out in a flash and didn’t explain anything because really, there was nothing to explain! I didn’t mind that he didn’t give me details of the tests he was running because I could kind or work them out and figured I could ask questions the next day.
I didn’t really care for the way he had stormed in and not introduced himself. Or the way he didn’t make eye contact when he spoke.
The next day came and I waited for him to do his rounds. Late in the afternoon, I heard his booming voice in the corridor. I remember thinking that he was speaking terribly loudly to his patient about their test results and that everyone could hear.
As he rounded the corner into my room, I realised that he had been talking about my test results. By the time he was standing at the end of my bed, he was halfway through a sentence and announcing all sorts of things that didn’t make sense because I had kind of missed the beginning of what he had been trying to say.
I looked at the nurse who was standing slightly behind him. I was confused. And I was actually a little angry.
‘Excuse me,’ I said to him. And then repeated myself. ‘Excuse. Me.’
‘Yes?’ I don’t think he was used to being interrupted because he looked a little surprised.
‘Hi,’ I said. ‘Can we just stop for a second?’ I took a deep breath, collected my thoughts and started.
‘For this to work,’ I waved my hands between the two of us. ‘I need you to be in the same room that I am in. I need to be able to see you when you speak. I need to be able to ask you questions and be clear that you are speaking to me. I need to see your body language and your eyes and be clear about what you are saying. I do not want you to start your consultation with me whilst you are still in the corridor. Is that okay?’
He looked stunned and completely lost for words. The nurse smiled.
I can’t believe that I was the first person to have ever pulled him up on this behaviour, but when he left the room (after explaining things very clearly, answering my questions and telling me what I could expect next) the nurse said that she had never seen him look stunned before. She also said that other patients had commented on how uncomfortable they were with his ‘bedside manner’, but no one had ever commented on it directly to him.
I was reminded of this encounter the other day when I was reading about Kate Granger and her #HelloMyNameIs campaign.
Kate is a doctor – a geriatrician and a writer. She is also has terminal cancer.
When she was an inpatient, she noticed that many of the healthcare professionals looking after her did not introduce themselves. She had no idea who was speaking to her about her care. She (and her husband) decided to do something about it. This from the #HelloMyNameIs website:
‘…we decided to start a campaign to encourage and remind healthcare staff about the importance of introductions in the delivery of care. I firmly believe it is not just about knowing someone’s name, but it runs much deeper. It is about making a human connection, beginning a therapeutic relationship and building trust. In my mind it is the first rung on the ladder to providing compassionate care.’
It’s incredible how such a simple idea has taken flight. Events have been held throughout the UK and there have been over 800 million impressions on social media. The more I have read, the more amazed I am at just how far-reaching this initiative is and how entrenched it has become in some places.
It is indeed wonderful.
However it is also kind of shocking that we need a campaign to remind people to introduce themselves and remember the importance of taking the time to connect with people at a time where they are possibly feeling very vulnerable and scared.
The next time I speak with medical and nursing students about effective communication, I will be holding up #HelloMyNameIs as an example of doing things right. And it will be the perfect anecdote to balance out the Prof PCS story.
Yesterday, we took the kidlet to her new orthodontist. We had been referred from her dentist and this was going to be the first discussion about the kid needing braces. She had a bit of nervousness about the whole process and wasn’t feeling all that great. She was also concerned that there would be pain involved. But, as I explained, this was just a chance for us to hear what was ahead and hopefully be able to ask any questions we might have. Plus she could meet the people at the clinic who she would be seeing regularly. And I also reminded her several times that if she didn’t feel comfortable with what she saw and who we met, we could go elsewhere.
The second we walked in, I knew that we would be staying with this clinic. The first thing we noticed on the wall was a white board which said ‘Welcome to today’s new patients’ and we spotted our kid’s first name up there with a few other names. The kidlet felt pretty good about that!
We walked to the front desk, and a lovely woman smiled at us all and turned her attention straight to the kidlet, saying hello and welcoming her to the clinic and introducing herself. She made eye contact the whole time with the kid before turning to hand me a clipboard. ‘Would you mind filling this in please? And, if it’s okay with you,’ she said turning back to the eleven year old, ’I’d like to show you around.’
The two of them went on a little tour of the practise and I heard them chatting away, the kidlet asking questions as each different space was introduced. When the kid returned to us in the waiting room, she was holding a clipboard of her own. ‘I need to fill this in,’ she said, and took great care answering questions about her likes and dislikes and interesting things about herself.
A short while later, the dental nurse came into the waiting room and, again, went straight to the kid. ‘Hi, I’m K,’ she said holding out her hand. ‘Is this mum and dad?’ She asked turning to us.
‘Now, I need to take some photos – just in that room over there. The room is tiny – are you okay to come by yourself? Or you can bring mum or dad if you’d like.’ The kidlet jumped up and smiled, clearly very pleased at being asked directly what she wanted. ‘I’ll be fine,’ she said.
The rest of the appointment continued the same way. When we were shown into the treatment room, K explained exactly what would happen once the orthodontist entered the room. The orthodontist welcomed the kidlet first and then introduced herself to us. The kidlet was asked regularly if she had any questions and anything she did ask was answered efficiently and clearly. She was congratulated on asking smart questions (mostly different versions of ‘is it going to hurt’) and no one tried to rush through things or to dismiss any of our questions.
The practical side of things – i.e how we would need a second mortgage to afford the treatment – was explained clearly to the grown-ups in the room and the ‘rewards’ system (a points program which earned gift vouchers) was explained to the kid. She looked delighted!
We left the clinic feeling very well informed. All our questions had been answered and we knew exactly what was going to happen next. The kidlet felt really positive about the whole experience too.
This is ‘patient-centred’ care at its best. It’s not just lip-service – it was far more than the staff all being overwhelmingly lovely. They were genuinely focused on ensuring that everyone knew what was going on and that the kid understood that this was all about her. She was given options – each of them explained to her – and then we were asked to think about them and make decisions, with the option of being able to ask further questions if needed.
So what does this level of care and attention take? It certainly took no more time that would be expected of a first consultation. There were no more staff members involved than at any other clinic offering the same service.
But what it did take is care and attention and an understanding of the ‘customer’. And respect. A lot of respect.
It’s no secret that I have had some problems with my local licensing authority (VicRoads). It’s also no secret that I have been annoyed and rather vocal about the Austroads 2012 Assessing Fitness to Drive Guidelines – specifically, the introduction in 2012 of the ridiculous section defining ‘satisfactory control of diabetes’ as an A1c of 9% (and the ensuing problems it caused!)
Austroads and the advisory group involved in putting together the guidelines a couple of years ago claim that this value was never meant to disadvantage people with diabetes; that it was there to simply trigger further, specialist treatment. And that it was never intended as an automatic suspension of a driver’s licence.
That may have been the theory. The reality was quite different. Many people with diabetes reported that their treating doctor did in fact interpret the guidelines as meaning that a 9% or above A1c was grounds for licences to be suspended. And that is what happened.
But here is some good news. The new draft guidelines – currently open to consumer consultation, and due for release later this year, have removed the A1c value defining satisfactory control of diabetes. It’s been a long process, but thanks to a lot of advocacy by Diabetes Australia, this is an excellent result for people living with diabetes in Australia.
One of the most enjoyable things about my job is the policy work in which I am involved, and I was pleased earlier this year when I was asked to join the working group reviewing and revising the diabetes chapter in the Guidelines. (Disclaimer: this is part of my work at Diabetes Australia and I was asked to represent the organisation on the working group. Diabetes Australia has received a significant number of complaints from people with diabetes who had been negatively impacted when the 2012 Guidelines were introduced and I have been involved in this work since then.)
The outcome of the review has been that some parts of the diabetes chapter have been completely rewritten. The advocacy efforts led by Diabetes Australia and involving the ADS and the ADEA, resulted in the removal of the 9% (arbitrary) value being eliminated. This is an outstanding outcome.
So, now it is your turn to do a little advocacy.
If you have some spare time over the next couple of days, and you feel really strongly about this issue, now is the time to get on board and participate. The point of public consultation is that people who are directly affected can have their say. If you have diabetes, you are directly affected. If you are the parent of a child with diabetes who, at some point, will want a driver’s licence, you are directly affected.
All the details of the consultation can be found here, including how you can make a submission. I urge you to comment – even if that is to simply say that you support the changes which should ensure that people with diabetes are not losing their licence because for a reason without an evidence base. And you might like to also add that you support the Guidelines’ focus on hypoglycaemia which absolutely can and does affect safe driving. Quick sticks – the consultation closes tomorrow.
At the risk of sounding Grinch-like, there is one thing about Xmas that really, really annoys me. It’s Kris Kringle (sometimes called Secret Santa). We also do a version called ‘Bad Santa’ which is unusually cruel in that people are able to steal gifts they prefer from others.
I find them all a complete and utter waste of time and, quite frankly, money. All up, we (Aaron and I) spend about $120 on KK gifts each Xmas – four KK gifts at the limit of $30 per gift. Please understand it is not the total cost that annoys me. It’s the total waste of it.
At the risk of sounding ungrateful, I don’t need anything. And for $30 I struggle to find something that is fun (and different from the bottle of wine/designer tea/candle that I usually buy).
I have made this very clear to my family who, if reading this, please ignore my Scrooge-iness and let’s all have a nice Xmas dinner!
For a few years now, I have suggested that instead of buying gifts for each other, we pool our $30 each and make a donation to a charity. It actually would add up to a decent amount and has the potential to make a significant difference in the lives of people far less fortunate than us.
Of course, for me, there would be no better way to spend this money than on a charity that is improving lives of people living with diabetes. With the $120 that just Aaron and I spend on KK presents, we could provide life-saving insulin for two years for a child in a country where medication is prohibitively expensive.
I am sure that I will love the bowl or bottle of champagne or colouring-in book I receive from my KK this year. But really, it will make no difference in my life. It will not improve it. Again, I get that I sound ungrateful to the cousin or aunt who has purchased this gift for me, and while I don’t mean to, it is the way I feel.
It feels wasteful. And there are so many ways that the money could be better spent.
So, today I have made a couple of donations. I have made a donation to Spare a Rose, Save a Child, adding to the monthly contribution I already make. The money I have donated will go to the IDF’s Life for a Child program and provide insulin or BGL strips for 12 months to a child who would not otherwise be able to access these supplies.
And I am also making a donation to Type 1 International to help their work in ensuring people with type 1 diabetes around the globe have access to insulin, diabetes consumables and medical care.
If my KKs are reading this, please feel free to give me a handmade card with a little note telling me you have donated the amount of my gift to either of these charities – or another one that you support. I promise that I will think it the best KK present under the tree, and I also promise to stop being a Grinch!
Our Xmas album collection is eclectic. One album that is on frequent rotation in the silly season is Bela Fleck and the Flecktones and their version of The Twelve Days of Christmas is different to say the least! Enjoy if you can.
‘Don’t you ever get tired of talking about diabetes?’ I get asked this quite a lot. And I can see why. There is a lot of diabetes in my life, and I do speak about it frequently.
The truth is that I don’t get tired talking about diabetes. I get tired talking about my diabetes, but the subject of diabetes is one of which I never tire. Diabetes is too hard for too many people – for all sorts of reasons – and until that is not the case, there is too much to do. Being tired or bored is not an option!
Advocacy can be a broad term. It can refer to political process, influencing policy change or promoting people’s rights and responsibilities. It can also be about raising awareness. It can be small or large scale. It can be about groups or individuals.
Advocating for self can be tiring. Often the times we need to be our biggest campaigners and put in the most effort are the times when it is the most difficult. Standing up to hospital staff who want to strip us of our right to manage our own self-managed condition is all good and well and we can get all assertive and angry about it and talk about what we would do if it happened to us. But that moment when we are actually in A&E for an accident or emergency situation, actually standing up for our self may simply be just too hard. Or impossible.
I know that my advocacy energies are different when I am feeling ‘over’ my diabetes. I tend to sit back a little more and not put myself out there so much. And I look for what others are doing and turn my attention and focus to that. It’s kind of like advocacy-by-proxy!
That’s why larger scale advocacy is really important. Big awareness raising campaigns are important – sometimes there is an ask (such as more funding or increased attention to the condition). Other times it’s just to inform people about the state of diabetes affairs.
A lot of the time, it’s not all huge and loud with lots of media coverage – often there are behind the scenes machinations that take a terribly long time, are terribly boring and involve a lot of bureaucracy and paper-pushing. (One great example of that is the three-year-long battle that has been trying to fix the mess up of introducing a ridiculous definition of ‘satisfactory control of diabetes’ in the current Assessing Fitness to Drive guidelines. The revised guidelines are up for public consultation at the moment and I am thrilled to see that the 9% A1c measure has been removed. These advocacy efforts undertaken by a number of Diabetes Australia staff – myself included – will be of significant benefit to people with diabetes holding a driver’s licence. Blog post to come soon.)
Advocacy doesn’t have to hit you over the head. It doesn’t need to be angry and aggressive. It is great when it is innovative and challenging. And it is okay if it makes you feel uncomfortable. In fact, sometimes we want things to be confronting and a little prickly as that can be a catalyst for people start to think and act.
So, a couple of things I thought I’d mention that tick a lot of advocacy boxes.
Today, Kelly Kunik launched the I Wish People Knew That Diabetes website following a hugely successful awareness-raising campaign back in April this year. Go have a look at the site and explore what she has to say.
Festival21 is being held in Melbourne on Friday 11 December. Sandro Demaio’s advocacy efforts are significant for many reasons, one of which is just how innovative and ground-breaking they are. The aim of this initiative is to address some of our most considerable social challenges, including sustainability, promoting healthy communities and climate change, with food as the central topic. To give you an idea of what Festiva21 has in store, this from Sandro in today’s online newspaper, Broadsheet, ‘We’re talking about empowering people to realise that the food on their plate is one of the most powerful tools they have for change. Food is a truly unifying factor across all schools of thought – politics, religion and race. Everyone loves food and everyone loves to eat.’
Last night, I was lucky enough to attend the 2015 Research Australia Awards Dinner and celebrate the best in Australian health and medical research, and advocacy
The reason I was there was to tweet. Actually, that’s not the truth, but I thought I should mention it considering that both emcee, (ABC’s national health reporter) Sophie Scott, and Diabetes Australia CEO, Greg Johnson made particular reference to it when addressing the audience.
The real reason I was there was because Diabetes Australia was awarding its annual Outstanding Award for Diabetes Research.
This year’s winner of the award is the inimitable Professor Peter Colman from the Royal Melbourne Hospital.
I could spend words and words and words explaining why Peter is a worthy recipient (read here for just some of his wonderful work). Anyone who knows him – or knows of him – would understand why he was a most deserved winner. His acceptance speech was, as expected, humble and appreciative. And he offered an insightful perspective of diabetes research.
The other highlight for me was the Advocacy award which this year went to brother and sister team Connie and Samuel Johnson who are responsible for Love Your Sister. Connie is living with terminal breast cancer and together with her brother has been raising awareness about the importance of young women being ‘breast aware’ and raising money for breast cancer research at the Garvan Institute.
Connie gave an impassioned speech about why medical research is critical to cancer. She implored that we need to stop the misconception that thinking positive cures cancer. ‘The real fact of the matter is that medicine cures cancer,’ she said. ‘Not postive thinking; not prayers.’
Obviously, Connie was speaking to a room full of researches; she was preaching to the converted. But she is absolutely right. Advances in medicine and improved outcomes – whether in cancer, diabetes or other health conditions – are due to research. They are not due to people being optimistic and cheerful.
I like to think that I am a very positive person, but no amount of positive thinking is going to beat my BGLs into submission or frighten my beta cells back into action.
That doesn’t mean that I am throwing myself a pity party, and I certainly don’t think that is what Connie was suggesting. For me the balance is this: feeling positive or having a positive attitude is all good and well, and it probably does make the day-to-day acceptance of living with diabetes easier. But it is the insulin, the devices and the tools I use that actually treat my condition.
We need more money going into medical research. We need to reward our medical researchers for their work and commitment and dedication. I was honoured to be in a room full of these incredible people last night and so glad that I got to personally thank and congratulate one of my diabetes research heroes.
(All this reminded me of this e-card which is cheeky, but makes me laugh every time I see it!)
Today, Australia has a new National Diabetes Strategy. I would be lying to you if I said that I had read every single word of the document (but, hey, knock yourself out and have a read here). I have had a skim. Now, every part of this Strategy is important – of course it is – but today I want to highlight type 1 diabetes in the document.
A lot of the Strategy crosses the boundaries of all types of diabetes, for example in the priority groups such as ATSI peoples, CALD communities, and those living in rural and remote areas. Attention to complications screening, recommending mental health screening at diagnosis as well as including regular monitoring in the Annual Cycle of Care, including diabetes-specific education and training to hospital staff. Services for women with pre-existing (types 1 and 2) diabetes planning and during pregnancy are considered with particular emphasis on pre-pregnancy planning and access to expert education.
While this is understandable – and there are many similarities in the way that these issues are addressed – there does need to be attention to the complexities type 1 diabetes brings. (Equally, the complexities of type 2 need to be tackled!)
But how is type 1 addressed?
Firstly, yay for a concise and accurate definition of type 1 diabetes. In fact, these 50 or so words could be used by any media outlet next time they need to define the condition! Also, well done to Sussan Ley (and her advisors) at this morning’s media briefing for giving such an articulate and well-informed summary of the diabetes situation in Australia.
Very pleasingly, early diagnosis of diabetes is one of the key goals (Goal 2), and type 1 diabetes is given its own treatment, including potential areas for action and measures of this progress. The Strategy acknowledges that 20 % of people newly diagnosed with type 1 diabetes present to hospital in DKA. This needs to change. Better awareness and recognition of type 1 symptoms to improve early detection are flagged as potential action areas.
Type 1 diabetes in the school setting is mentioned, specifically looking at better supporting families, and children to participate fully and safely at school.
In the piece about transition from adolescent to adult healthcare settings, access to psychological services is emphasised.
Could there be more? Well, of course there could. Diabetes is such a huge issue; there can always be more. So, what would I like to see that hasn’t made the cut?
Well, I would have loved there to be something about diabetes technology, specifically around pathways for approval and access of emerging technologies, as well as sorting out issues with access to currently-available tech.
I would have loved for the early diagnosis topic to be broken down a little more. It’s an issue at all stages, but poses a particularly significant challenge for adults with type 1 who are often misdiagnosed based on their age. It can take a lot of time – and a long period of poor health – before they are correctly diagnosed and treated as necessary.
More attention to structured education programs (such as DAFNE and DESMOND) and their value. And how new programs, such as the valuable POSH program (addressing impaired hypo awareness), could be funded.
Breaking down the section on healthcare access for Australians in rural and remote areas and focus on particular problems faced by those with type 1 in those areas. Specialist diabetes care in these areas is minimal; type 1 specialist care is even harder to find
The same could be said when addressing the management and treatment of type 1 in hospital and aged care setting. Type 1-specific education is essential so we stop hearing people getting lousy treatment.
Of course, this is a high level document and the detail is simply not in there. No dollars have been allocated to the strategy. The devil is in the detail – and we just have to see how that plays out.
Finally, I’m not surprised to say that already the naysayers are out complaining about the Strategy. It’s the usual thing with the usual suspects complaining amongst each other and not offering any suggestions or looking at the positives. I wonder how many of the people complaining actively participated in the consultation stages of the development of the Strategy. I am just stating this here because really, it’s tiresome hearing the same complaints about the same issues. I have some concerns too but I am also willing to acknowledge this as a progress and a step in the right direction.
Happy World Diabetes Day to everyone for tomorrow. Shine a (blue) light on diabetes.
Panel at MedTech
I’m in Sydney today for the MedTech conference (follow along at home #MedTech2015) and also swamped with the usual World Diabetes Day happenings. Which I love, because it is a chance to speak about diabetes more than usual.
On my flight up here today, I re-read some of the things I’ve previously written about World Diabetes Day – and, more broadly, Diabetes Awareness Month – and thought I’d revisit some of them today.
Like this from the first year of writing Diabetogenic. (Contains lightsabers.)
And this, where I admit to wearing blue mascara, but thankfully the photographic evidence is poor!
This post tells of a crazy 2 days which kicked off with research awards, moved on to a very early morning flight to Sydney so I could do some diabetes myth-busting on a morning television show and ended with me participating in a 24 hour tweet chat. With lots more in between!
With so many different World <insert cause here> Days, explaining why we need one for diabetes (or anything else) can be tough. But here, I justified the need, sharing my own story of a hypo that wouldn’t quit and the advocacy that came after it.
And one of the proudest mum moments I’ve had is in this post when I wrote about how our daughter became my favourite diabetes advocate with her impromptu awareness raising activities at school on World Diabetes Day.
It’s always a busy, blue-tinged time.
I speak a lot about the challenges of living with diabetes. Sometimes, the challenges don’t directly relate to me, but I can still see and understand that the diabetes experience is different to anyone and one person’s easy-peasy-lemon-squeezy is another person’s anxiety- and stress-inducing concern.
One of the things that perplexes and annoys me is people who are unable to see diabetes outside of their own bubble. Frequently these people fail to see that just because they don’t need information about <insert topic here> that doesn’t mean everyone has access to or an understanding of it.
Sometimes, when we are running an activity or speaking about a topic at one of our events, people say that they have never had any problems with that, so why would we speak about it – completely ignoring the fact that we have surveyed lots of people living with diabetes and this is one issue that is of concern to many others.
I ‘work in diabetes’ (which sounds ridiculous, but you know what I mean) and the last person’s diabetes that gets considered when I am at work and we are developing programs is my own. If I thought, for one minute, that my experience of living with diabetes mirrors most others, then I’d be utterly naïve and not doing my job. That’s why working and engaging with, and listening to as wide a range of people affected by diabetes as possible is critical to delivering services that are of use.
(Because, let’s be honest, if it really were all about me, I’d spend lots of time and effort working with the leather crafters at Hermes to help me design a perfect diabetes bag. Because: shallow. And lots of stuff.)
And you know if you just rolled your eyes at that last comment because you have found (or designed) the perfect bag and think it is waste of time to speak about it because it doesn’t affect you, then a) stop it and b) can you tell me where to get one? Thanks.
With World Diabetes Day this week, it’s a great time to think about how others deal with diabetes, what they know, what they don’t, what their concerns may be.
If I only cared about what was going on in my diabetes bubble, I wouldn’t write so much about campaigns like #Insulin4All. You can read all about the campaign here, and my post about it during the lead up to last year’s WDD. And watch this video!
I have never had trouble accessing insulin. But that doesn’t mean that I don’t care about those who do.
Diabetogenic 