Actually I have no idea why I have diabetes. If I really knew exactly why type 1 occurs I’d be publishing in the BMJ or the NEJM, I just wanted to talk about the language of being a diabetic as opposed to a person with diabetes.
Sometimes Twitter does your head in, and I’m not talking about the trolls.
Possibly seeing a marketing opportunity, @DiabetesAU (NOT it must be noted Diabetes Australia but the twitter handle of Natalie Wischer, who is apparently the CEO of the National Association of Diabetes Centres NADC) was quick to tweet her whole-hearted endorsement-presumably on behalf of NADC, as indicated by the first person plural.
We agree! We will discuss this & more at the Australasian Diabetes Advancements and Technologies Summit (ADATS)
Yippee!! I thought, how great there’s going to be a whole conference on diabetes technology in Australia AND they are totally into patient choice!
I rush off to the link so thoughtfully provided at the end of the tweet to book tickets, only to find this conference is patients excluded. You need a health care provider number to register. So no patient choice here BUT never fear patient choice is going to be discussed by a bunch of doctors and DNEs. My irony meter is going off the scale.
Don’t despair though fellow-patients, despite the ban on our attendance, I’m assured that the patient voice will be heard. One person with diabetes and a health care professional are going to present on this “very important topic”. Ah right, I check the program, a person with diabetes is going to get 5 MINUTES in the program to present the consumer perspective and a psychologist (who doesn’t have diabetes) is going to get 20 MINUTES to speak about psychological impacts.
Whilst I guess 5 minutes is better than no minutes for a consumer voice to be heard-I’ve got to say I find the 5 minute time slot rather insulting, especially as the speaker, @RenzaS is an experienced and professional presenter with many years experience at DAVic and in advocacy, it’s not like she can’t handle a longer time slot. 5 minutes is the allocation for “hearing the patient voice”. Hmmmm.
That aside, however, neither a 5 minute consumer slot or a psychologist presenting professional insights is patient inclusion, nor does it have anything to do with supporting patient choice in technology. Inclusion and patient choice is about allowing patients to access information to enable informed participation in healthcare.
I understand that professional organisations run conferences for their members and sometimes those organisations exclude non-members-it’s their conference after all. I also understand prohibitions on “consumers” attending conferences where drug companies advertise their products.*
This is fine, just don’t boast about your support for patient choice when your implementation of that support is to discuss it at a conference of health care professionals from which patients are deliberately excluded. This just serves to highlight how very keen many professionals are to exclude “patients” from the dialogue of healthcare.
Without access to information, the patient will never be able to take control of their health decisions, I wonder if that’s the real reason we’re excluded, as the old saying goes, knowledge is power.
*@DiabetesAU tweeted to me that patients could not attend because of pharma sponsorship of the event. I have perused the program http://nadc.net.au/wp-content/uploads/2017/03/ADATS-Program-26.6.17-zip.pdf as at 7pm 3rd July 2017 and I can find no disclosure of links to pharmaceutical or other commercial enterprises at all. I would have thought transparency on commercial sponsorship would have been desirable to those attending, it is to me and I’m not even subject to the rules on pharma marketing.Tweet
I was one of the many pwd who was stunned back in 2015 when the UK’s National Institute for Clinical Excellence (NICE) issued its Guidelines for Type 1 Diabetes in Adults. These guidelines recommended a “target” HBA1c of less than 6.5%. The previous target was 7.5%
What I found stunning was that so few people managed to achieve an a1c of 7.5% or less and yet here they were setting an even lower target. For the record -the UK National Diabetes Audit showed that 29% of adults with type 1 recorded an a1c <7.5% (or 58mmol in the new measure) in 2015/16 AND fewer than one in fifteen (i.e. less than 10% of pwd) recorded an a1c of less than 6.5%.
It makes you wonder what exactly is the point of setting this number, what does it mean and is it sensible to set a target that appears cannot be achieved by 90% of people.Tweet
So what’s your superpower?*
These and other great questions and insights have been occupying my mind since I attended a conference for online health advocates on the weekend.
- We’ve come a long way baby!No longer content to be dismissed as irrelevant unless we agree to be nothing more than a mouthpiece for professional organisations (be they doctors, hospitals, pharma or professional disease corporations like DA) advocates are telling their own stories, connecting supporting and empowering each other and advocating for what ‘we the people’ really want. Slowly but surely advocates are bringing the voice of the ‘patient’ into the dialogue of health care and we are seeing we DO make a difference. It was wonderful to share our experiences and to see how much we had in common. It was great to catch up with other members of #ozdoc!
- Diabetes is different I may be biased but diabetes advocates rock. I got the impression that those of us in diabetes were across the issues and had loads of experience in the social media space already whereas many other conditions/diseases were still just dipping their toes into the social media space in Australia. I think where we differ from most other conditions is the sheer volume of treatment decisions we make every day.
So often (and again at this conference) the patient voice is presented as though it is competing or trying to replace medical information. In diabetes that’s just so yesterday. Treatment is in our hands and the minutae of basals, boluses, mud cake and triathlons is beyond healthcare professionals anyway. Sure, we shouldn’t give medical advice but I have often spoken of what worked for me and I can’t count the number of times I’ve decided to try what somebody else says has worked for them. I really wish doctors would realise we have no interest in competing or trying to supersede them.
- “Fear and humiliation and shame are terrible things to live with.” Luke Escombe
Luke is a musician, comedian and advocate for Crohn’s disease. His speech was both really funny and inspirational. The quote above is powerful in that I think a lot of people with medical conditions live with fear, humiliation and shame. Be it because they have an ostomy, look different in some way or perhaps they don’t achieve the level of diabetes management that some random doctor or nurse feels is appropriate. Let’s all support each other in standing up against fear, humiliation and shame AND speak up for people who don’t (yet) have a voice.
- *Use your vulnerabilities as a Superpower Nick Bowditch was inspirational in encouraging us to reframe our stories. He shared that he struggled with depression and addiction BUT he reframed this to tell us he has incredible empathy, he was aware of his vulnerabilities and because of that he could see ours too and (here’s the killer)-he doesn’t care that we have vulnerabilities.
There’s enormous power in that reframing, in turning the tables so to speak on those who might judge him for what they perceive as weaknesses.How might you reframe your story today? (I don’t just mean in diabetes but to reframe any of your trials, sadnesses, grief or vulnerabilities so that you can tell a different story). Often you have to go through bad things, failure, loss etc in order to discover your superpowers. As Nick said:“Fear, pain, grief etc are gifts wrapped in s#1t!”
Janssen-Cilag Pty Ltd paid for my travel and accommodation expenses to attend this conference. All thoughts and opinions expressed here are solely my own and do not reflect the thoughts or opinions of Janssen or J&J.Tweet
Despite a lot of words to the contrary there is no one-size fits all solution for diabetes management. With choices about technology, different versions of similar technology, different insulins and different diets it is actually quite a complex business to decide what you’re going to do. Sadly, I think healthcare doesn’t really understand the notion of patient choice-they do in theory but practically they can’t stop themselves from knowing what’s best. (See for example this, that refers to patient preferences not to use CGM or a pump as “barriers” and assumes tech is universally beneficial!)
So this is the sort of stuff I consider before adopting a new piece of tech, I’d be interested in hearing if you have other ideas or experiences in deciding upon tech. Continue readingTweet
I’m going to tell you something most of you know but I’m reminding you because you probably didn’t hear it on World Diabetes Day but you should:
PEOPLE WITH DIABETES ARE AWESOME
On Monday, the actual WDD I was honoured to go with Jane Reid and her husband John to the Sydney Kellion awards to celebrate Jane’s 50 years (it’s actually 51 years) of kicking diabetes butt. In her short speech, Jane acknowledged how much the D online community, particularly Reality Check had helped her-I can’t agree more with this, it’s made such a difference to my life with D.
As well as Jane there were a handful of others getting medals including some 60 and 70 year medallists. There was a man who got his 60 year medal -BUT he was diagnosed when he was 31-do the maths. That’s a really impressive innings, he still lives in his own home and does his own housework. There was also Mary who got her 70 year medal, awesome effort and just to show that age is no barrier to feeling stigmatised and at risk in medical situations because of confusion-Mary took to the stage and amongst other things, advocated for a name change to clearly distinguish different types of diabetes.
After a glass of champagne with Jane and John (at a bar of course, no refreshments were provided at the function-you think they could sling you a cup of tea and a Tim Tam after 5 decades with diabetes) I jumped on a plane to Melbourne. I was really grateful to receive a complimentary registration(scholarship) for the Mayo Clinic’s Healthcare and Social Media Summit. It was awesome that of the 5 scholarships, 2 went to type 1 diabetes advocates (me and Renza Scibilia from DA) and Kim Henshaw who many of you will know from Ozdoc gave a presentation at the Summit. So yeah, us type 1s rock. It was a little disappointing to see that the only unhelpful language at an otherwise great conference came from a presentation about diabetes 🙁 but how lovely that as Renza, Kim and I looked at each other in horror, before we could get fingers to devices, the lovely (non-diabetic) health and appearance advocate and fellow scholarship holder Carly Findlay Morrow was rightly protesting inappropriate and stigmatising language on behalf of all consumers. Thanks Carly, love your work.
I met so many great people at the conference, some of whom I had met via twitter but it was great to talk with in real life. I was reminded of what a long way healthcare and social media has come since the late 90s when I first got involved and also of the power of connectedness and how much stronger each of us fighting in our small corners can become when we support each other. A very big thank-you to the Mayo Clinic and Consumer Health Forum for enabling me to attend.
I’ve always felt the type 1 community had my back, it was nice to see and feel that extend across the spectrum of health ‘consumers’ and within sympathetic parts of the professional community. The revolution is well underway, let’s keep it coming!
Is there such a thing as enough in diabetes management?
Your A1c is too high, you get it lower and your weight increases, you exercise more but the resultant highs and lows lead to an increased A1c. I know of people who’ve been told their a1c is too low, they’re at risk of hypo unawareness. You change your diet and you get more lows and for no known reason your lipid profile becomes crap and so on and so forth.
At this point I go one of two ways. Continue readingTweet
I’ve said it before but it needs to be said again because I had a conversation with someone today who was made to feel bad/shamed because the amount of sugar stuck to their red blood cells was more than the doctor would have like. Being made to feel bad isn’t going to help anything.Tweet
Yes, indeed in 2016 a GP has indeed been given tools for dealing with “the non-compliant avoiders” by the state body supposedly helping people with diabetes who see fit to boast about it.
Diabetes Australia’s language position statement was published in 2011. It is a particularly well-considered and helpful document in my opinion. What I particularly like about it is the way it delves beneath the words to examine what the choice of particular words displays about underlying attitudes.
Use of the terms ‘(non-)compliant’, ‘(non-)adherent’ is particularly problematic. Such terms characterise the individual as cooperative or uncooperative, especially when used as adjectives to describe
the person rather than the behaviour. Using these labels can mean opportunities are lost to ask relevant questions, develop collaborative goals,
tailor treatment regimens and make referrals that actively support the person to manage his or her diabetes. Attempts to increase ‘compliance’ and ‘adherence’ generally involve persuading the person with diabetes to change his or her behaviour to fit the health professional’s agenda Diabetes Australia’s 2011 Language Position Statement
Not only has a General Practitioner come out of DNSW’s training talking about “non-compliant avoiders” but DNSW are, boasting about it and giving medical professionals “tools” for dealing with these people. How very sad it is that Diabetes NSW is promoting the use of the very language deemed inappropriate (for very good reasons) by the national body’s position statement.
Sad days indeed for those of us with diabetes who have to interact with such attitudes!