To people with type 1 who feel obliged to post blaming, shaming and just plain scary pictures on social media: (I’m not going to share the social media image in question as I don’t want to perpetuate the awful message).
1.I know you’re scared of complications, we all are but you need to learn how to cope with the fear. Sticking your head in the sand and saying bad things only happen to people who eat sugar is ignorant and it’s not going to help you.
2.Diabetes is difficult, being simplistic doesn’t help anyone. The person I know with the worst a1c, never ate cake, never ate ice cream, never had dessert, never drank juice in the whole four years I knew her at university, she exercised too and was underweight. She had an eating disorder and hypos terrified her, she was also depressed about complications. A1c does not simply equate to sugar consumption, that’s a ridiculous notion and it should not be perpetuated.
3.Risk reduction does not eliminate complications. People with low a1cs develop complications and those with high a1cs don’t. Before about 1980 ‘tight’ control was impossible, what would be considered alarmingly elevated sugars was pretty great control back then. Not everyone developed complications.
4.Have some compassion on people who, for a variety of reasons, may be suffering complications. It is disgusting that, to allay your own fears, you are deliberately promoting a false message and shaming people.
5.As people with diabetes we can do better than this. Do it for yourself, face your fears even if you can’t do it for the sake of accuracy and compassion for others.
There was a rule on social media that simply said “don’t be a dick” in this case I think I’ll say don’t be a TypeOneShit.
Just read a great article from the British Journal of General Practice (shout-out to @ipump1 for sharing it with me) and Charlotte Williamson for writing it-kudos. It’s about the emancipation of patients from the oppression of doctors and as the subheading of the article says, it’s “a theory whose time has come”.
Firstly, it acknowledges the high ideals and high levels of competency inherent in being a medical practitioner. The article does, however, draw attention to societal and professional factors that inhibit a just distribution of power. Doctors’ training, beliefs and methods of operation serve to put patients in the position of being a weaker group subject to the (sometimes) unjust use of power by doctors as the dominant, stronger group.
“What doctors see as benign beliefs and actions, patients may see as putting them at an unjust disadvantage.”
The theory is certainly timely for me as I’ve pondered patient engagement, activism and autonomy even more than usual lately. Williamson’s theory makes a lot of sense. She outlines three examples of the way in which what is generally accepted in medicine can actually enforce the will of the powerful (the doctors) upon the weaker group (the patients). These are doctors’ sense of being different and special (C’mon you know that’s true), secrecy and resistance to change. I thought I could include all three issues in one blog but realise that would make it too long so I’m going to do one at a time.
Doctors’ Sense of Being Special
General Practitioner, Dr Clare Gerada posits that during their training doctors come to believe they are special and quite different from patients, this protects them psychologically from constant exposure to illness and death but feelings of difference morph quickly into feelings of superiority that in turn leads to oppressive behaviours. Williamson says “In medicine feelings of superiority sometimes glimmer through in, for example, the way some doctors speak patronisingly to patients, disregard what they say, or assign patient-speakers at conferences the worst spots.” (Williamson,C.)
Conferences are an interesting example methinks. A couple of illustrations spring to mind. Recently I read Renza Scibilia’s experiences of presenting at medical conferences. Check the whole blog post out it’s a good read, but essentially a dietitian stood up and told her ‘in no uncertain terms’ that she was “irresponsible” for talking about a piece of research on diabulimia and more than one endocrinologist criticising her and saying she needed to be ‘reined in’ when she related her personal story of using an open source app to create a closed loop pump.
An endocrinologist (whose name I’m withholding because this blog is about the system, not him as an individual) chastised me for my blog post, He declared my blog ‘unhelpful’ and ‘inappropriate’-perhaps it was to him but he wasn’t the intended audience. He’s entitled to his opinion and to put it on social media but he wants to deny me the same courtesy. He also falsely claimed the post was a personal attack, that’s a bit more problematic:
Note the assumption that he has the right to make universal statements about helpfulness and appropriateness and the ‘othering’. I am implicitly excluded from the right to make comment because I am not a ‘peer’. When I and others pointed out that it was a critique of practice and the claim that it was a personal attack was false given that neither the the presenter nor the hospital were named and there was nothing ‘personal’ about criticising research methodology and the publicly stated practices of a public hospital, he changed his tac to telling me I shouldn’t be ’emotive’.
This defensiveness, as though health service providers are beyond criticism and it is outrageously inappropriate to critique their publicly presented practices and research is hugely oppressive and that’s why it only every works one way. Professionals criticise patients openly and publicly but when a patient criticises a professional, it is portrayed as a heinous attack by the holders of power. This handily silences patients’ concerns from ever being raised. Patients are criticised and attempts made to silence them for presenting matters of significance at conferences and when practices that are harmful to patients are presented as though they’re best practice (discharging patients from publicly funded care, for reasons that can’t be articulated for example) there are vigorous attempts by some professionals to silence any criticism. I would put money on the fact that not one professional gave feedback to the public hospital that kicks people out, nor did one professional take to task those practitioners who criticised Renza’s presentations. It’s not the criticism that gets me, it’s the double standard.
All of this conspires to keep patients in their place, subject to the decisions and power of the professionals. Life is surely much easier when you can do as you like without having to worry about what other (lesser) stakeholders might be concerned about.
I’ll consider the use of secrecy and resistance to change in future blogs, these too contribute to maintenance of existing power structures within health. I hope that together we can think about ways in which we can emancipate ourselves from these constraints and ways of thinking which, as Williamson says hinder ‘medicine from being as humane as doctors’ talents and good motives should ensure.’
*Yes, my criticism of a presentation at a conference last year was scathing but not particularly more so than standing up at a session and calling the presenter ‘irresponsible’ nor telling a person’s boss that she needs reining in, despite the fact there was a very clear disclaimer that presenter was speaking of their personal experience and not on behalf of the organisation for which they work/ed. I note that nobody has actually attempted to defend the validity of the research or the practices that I criticised (they don’t have to, but if I’m to be castigated for criticism it should be about invalid or unsubstantiated criticism, not tone) butI believe the hospital continues on its merry way with kicking patients out.
You will find the article to which I refer here:
Williamson, C. The Emancipation of Patients: a theory whose time has come. British Journal of General Practice, March 2019. p150
Diabetes Australia have launched a campaign about hypos, #thelowdown2019 and it’s an opportunity to increase conversation around hypos.
Thanks to technology (pump consumables for which I’ m grateful to Australian taxpayers for making them reasonably affordable) and my Private Health Insurance (through which I can get the 10k a pump costs reimbursed) my hypos are pretty mild. This wasn’t always the case though, back in the days of Protaphane and Actrapid, I had some pretty worrying hypos.
The hypos where I felt like my brain was in quicksand and there’s just no way to ingest glucose quickly enough to stop being pulled under.
Every so often it’s good just to take stock of what’s going on in the diabetes world (and wider health landscape) and shine a spotlight on the good. So here’s an assortment of noteworthy things, please let me know of others.
1. The Language of Complications
I’ve blogged about complications and blame , before. It’s good to see Grumps and Renza getting a piece on this-specifically the ramifications of complications and language into the British Medical journal-way to go guys!
Some trivia, apparently being female and having a later age onset of type 1 diabetes (30+) makes you more likely to develop additional autoimmune diseases. I guess I”m just the exception that proves the rule, diagnosed with type 1 at the tender age of 1year and 4 months and Hashimotos (hypothyroidism) at 6 (had been severely hypothyroid for some time but paed Endo missed it. https://themighty.com/2019/02/type-1-diabetes-study-autoimmune-disease-age-diagnosis/
For Aussies, it has been interesting to see both the Government and Opposition make specific commitments to type 1 diabetes in the lead up to the next election. Kudos to JDRF who I think have been the leaders, as well as the type 1 community in general who’ve stepped up to make politicians aware of type 1 and of how important this issue is to us. If you’re on social media, simple things like thanking politicians on their Fbook pages for their commitments keeps the pressure on.
5.Spare a Rose
It’s shocking that almost 100 years since a treatment was found to prevent the slow, painful death of those with type 1 diabetes, children are still dying because they can’t access this life saving medication. Spare a Rose is a fundraising initiative, that suggests on Valentine’s Day, you donate the cost of at least one rose to Life for a Child.
Sue Robins’ has worked in paid and unpaid patient advocacy positions for sixteen years. To see her lay out in compelling prose how utterly defeated and pointless all that work was, is heartbreaking. It should be compulsory reading for anyone undertaking or thinking of undertaking a patient advocacy role as well as for all professionals who believe they are engaging with patients.* The links provided in Sue’s blog to some critiques of patient engagement are also very much worth reading.
Although my experience has been less extensive and my contact more sporadic than Sue’s everything she said resonated with me. It’s that feeling that despite all the promises and all the time and effort you put into something, the outcome is not what it should be for those people on the receiving end of care. In my case, this fills me with anger at the waste of time and resources-why bother consulting when you’re just going to do what you want anyway?
Many people on Twitter empathised with Sue’s post and you could feel the mutual frustration at lack of action and hurt as a result of broken promises and feeling disrespected. It was this interaction that I thought summed things up well:
I am sure that there must be examples of patient engagement leading to change-somewhere internationally? Perhaps? So far it’s crickets on Twitter in regards to positive outcomes.
I found myself agreeing with those like Katrina who put the point eloquently:
So patients caught up in the engagement system are left feeling hurt, burnt out and disillusioned whilst precious dollars are being wasted on meetings and committees with no output to show. Is it all just a way of deflecting “negative public pressure on the decision makers”? Are the patients being engaged just sacrificial lambs for a system that doesn’t value patient input but wants to appear as though it does?
I would love to know what you think, whether you’ve had direct involvement in patient engagement initiatives or not.
*Patient engagement here refers to healthcare organisation’s attempts to include patient representatives in the design of systems and procedures used by the organisation in delivery of care. It doesn’t refer to interactions between clinicians and patients.
So the food police still make an appearance from time to time and you know what, in most cases they refuse to believe that you as the person with diabetes know more about your condition than they do. So as a public service (no need to thank me) I’m offering an occasional series of food police responses. This is one I call the Dolores Umbridge:
Do you have any special techniques you like to use to respond to those who should really keep out of other people’s affairs? Would love to hear them!
So this is Christmas…I am generally in favour of keeping diabetes out of Christmas but there’s been a recent flurry of discussion on the inter webs about this topic. So here’s mysanta list:
10. Insulin for all
We all know people are dying because they can’t afford insulin. This is a shameful situation, 100 years after the discovery of insulin. What’s even more shameful is that people are dying in one of the most developed and richest countries in the world. At a practical level consider a donation to Insulin For All .
Similar to the above, but the things we need to manage our type 1 in an optimal manner are hideously expensive. Test strips let alone CGM and flash monitoring are beyond the budget of so many. C’mon let’s people with diabetes, governments and pharma/device companies work together to help people with diabetes.
8. Access to quality, non-judgemental and supportive HC and peer support
We have to engage with healthcare to stay alive, complications screening, scripts for insulin etc etc. It would be great if the judgement and blame approach we still see in many settings was banished for good. Some Drs and DNEs need to remember to do no harm and that includes psychological harm. It should also include being committed to quality, personalised care and being able to justify clinical decisions that impact people’s health.
7.Every HCP/academic/health promotion officer involved w diabetes given #languagematters statement from DA
I can’t believe it’s been more than a decade since DA pioneered this and yet you go to conferences etc and some presenters still talk about ‘diabetics’ having poor control and being ‘non-compliant’ <grrrr>. DA Statement here
6.Every HCP given basic training in what type 1 is and on what insulin dependent means
Now wouldn’t that be great, we wouldn’t have to stress when admitted to hospital that somebody was going to kill us and we wouldn’t have to explain the most basic of facts about type 1 (NO! we don’t grow out of it and YES we do need basal insulin even if fasting).
5.A really good virtual reality game of type 1 D
All HCPs should have to play this at least for a few months. Experience the grogginess of highs, the constant mental gymnastics, the hypos in the middle of the night and despite your very best efforts at the end of the game, you still get a long lecture that somebody with hindsight is able to produce about what you did ‘wrong’ to produce a high or a low.
4. Surgical tape
Now bear with me here, I know some of you were a little perturbed to see this on a list of suggestions for diabetes-themed Christmas gifts but I personally could use this under the Chrissy tree-think how handy it would be to tape up the mouths of annoying relatives who ask “Should you be eating that?”
3.A personalised insulin algorithm for pizza (or other food nemesis) that is 100% accurate.
C’mon admit it, this would make you feel pretty darn smug. Impossible to achieve this every time, but it’s nice to think there might be an answer our there.
2.A lifetime, on tap supply of your hypo fix of choice
I am so sick of buying hypo fixes-I just don’t want to have to think about it anymore. Oh and ones that don’t get icky when you find them at the bottom of your handbag/in a pocket 12 months later-that’d be great thanks.
Yeah, we could all see this coming! A cure would render the rest of the list obsolete and that would be the gift of a lifetime!
I’d love to hear your suggestions for what you’d put on Santa’s list-diabetes related -or not if you like. Please comment below.
It’s diabetes awareness month and I have to admit I’m too tired right now to jump on board. Not sure why really, probably a combination of a a bit of burnout and the approach of the end of a year in which I chose to work 6 days a week. So for me I’m continuing with an approach I’ve been trialling for the last few months, making diabetes invisible. Haha anybody with type 1 knows that’s impossible, the boluses and basals, the carb counting the testing and adjusting-they won’t stop. I’m still doing all that but I’m trying to make it all less burdensome and trying to think about it less-at least for a while.
At the moment that looks like the Ypsomed pump and Libre. I never really took to my third Medtronic pump that I got about this time last year, the 640G is big and cumbersome compared to my earlier Medtronic pumps. The 640G would always bulge out of clothing and I got sick of having to wear it clipped onto jeans pocket or having this heavy bulge in a pocket-it was just too obvious and I could feel its weight pulling on me-a metaphor for diabetes if ever there was one. I was fortunate to be given the Ypsomed pump* earlier this year, I feel much more comfortable with its smaller size and lighter weight-it can be slipped into your bra without giving you a third square breast. Similarly the Libre, whilst visible during the summer months in Australia is invisible to me-I don’t feel it or see it (so long as I wear it on the back of my arm), testing is quick and clean and best of all it’s not going to beep at me to tell me that fifteen minutes ago I was high or low.
I see and talk with people who are looping, many feel that that makes diabetes less intrusive for them. I have a repaired Medtronic pump suitable for looping but at the moment I don’t want to think about setting it up, about adapting to something new again and I don’t want to wear CGM which is much bigger and obvious than the Libre. I plan to try looping next year and like most D tech innovations of which I’ve been sceptical I will no doubt find that it makes life with diabetes better rather than worse.
I like the idea of looping and the #wearenotwaiting movement, I really do, but right now I’m just wanting to make diabetes INVISIBLE. For this diabetes awareness month I’m leaving it to my buddies in the d world who are doing a fabulous job, as always, of raising diabetes awareness and making the burdens of D apparent to the non-D community. For this year I’m lightening the load just a little-a few ounces less pump weight, a little less time online and scanning rather than pricking-it’s little enough but that’s all that I can do to ease the burden for now, and that has to be enough.
Happy diabetes month and remember to wear blue on November 14!
*Ypsomed did give me a pump to trial & have allowed me to keep it, there was no expectation or obligation that I would write about or comment on the pump.
Diabetes care amongst hospital inpatients, as I mentioned here, was a topic of focus at the recent Australian Diabetes Congress #18ADC. I have highlighted this as an issue of concern before here and here and the anecdotes of hospitalised people with type 1 make alarming reading.
Whilst there was an overwhelming acknowledgement that there is much room for improvement in this area I remain concerned about the lack of concern around how quickly people with type 1 can suffer serious consequences of too much or too little insulin. There was no differentiation between the way that insulin-dependent, non-insulin dependent but on insulin and not on insulin ‘diabetes’ patients were being ‘managed’ in the presentations made from hospitals. Whilst the data recording systems that are reviewed by a nurse educator every 3 days (!) are great to identify type 2 patients who need a treatment review because of persistently high sugars etc. It’s too late if a type 1 is in DKA for a DNE educator to look at where their sugars were three days ago. I was struck by the lack of urgency in type 1-again I think this comes down to stigma about diabetes in general and a lack of understanding and appreciation that type 1s are walking a tightrope between severe hypoglycaemia and DKA every day-the state of “dangerous safety” that Banting referred to some time after he developed the 20th century wonder-‘drug’ insulin.
A really bright spot amongst the presentations was one by Rebecca Munt, a PHD candidate with a nursing background who also trains Diabetes Educators. Rebecca’s research was on the experience of people with type 1 whilst being an inpatient. I LOVE this way of bringing the voice of people with diabetes into the healthcare discussion.
This is what Rebecca presented as what we already know (telling and a bit alarming)
Rebecca’s research involved focus groups and interviews with t1s who’d been hospitalised in the last few years and a theory on this experience was suggested and co-designed with the research participants (that’s my very rough attempt to explain constructivist grounded theory-if I’ve got it wrong I hope somebody will tell me).
What Rebecca found was:
This really resonates with my experiences in hospital and with the many stories I’ve heard from type 1 friends and acquaintances. We are not being difficult, we have good evidence to support the fact that HCPs in hospital settings are quite ignorant about type 1 diabetes and we need to be vigilant to keep ourselves safe. We manage our diabetes 24/7, self-management should be the default situation unless we are truly mentally incapacitated.
Some years back the British Medical Journal published a great, type 1 diabetes specific article titled, What happens when you know more than your Doctor, amongst its findings:
Patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions, and expertise taught to patients in one branch of medicine can be considered non-compliant by those who are not specialists in that field.
Although patient education can give people confidence in their own self-management skills, it cannot solve the power imbalance that remains when a generalist healthcare professional, however well meaning, blocks access to medication and supplies needed to manage chronic diseases successfully.
I am still seething about a presentation at Australasian Diabetes Congress 2018, #18adc that discussed the results of a 12 month review of an “Insulin Dose Adjustment Clinic”, in a major teaching hospital in innerEastern-Sydney.
This was the least patient-centric, most egregiously substandard research methodology and ethically questionable thing I’ve seen presented. I know these are strong words but I stand by them not least because people with diabetes who attend this so-called clinic are being denied adequate care if the centre’s actions are truly the way they were presented in this talk, I have no reason to doubt what was presented but if some of the illustrious names associated with this hospital want to correct or clarify things, I’d be delighted to hear from them:
Substandard Research Methodology and Ethically Questionable.
Several times during the presentation the Registered Nurse and Credentialed Diabetes Educator making the presentation said that over a year, 7% of total referees to the clinic were “discharged from our care” for non-adherence AND this was in addition to the 20% of patients who were discharged because they didn’t respond to 2 attempts at phone contact. In total, 33% of people referred to the clinic did not complete the insulin dose adjustment clinic-if you were a business and 1/3rd of your customers didn’t return you’d be out of business/our of a job pretty quickly.
So why is this a substandard (as in it wouldn’t pass a High School research project test) research methodology? Simply because of an abject failure to define their terms.
When asked by an audience member what the definition of non-adherence that led to discharge was, the response was cringe-worthy. “Oh it’s a bit subjective I suppose… you can just tell”
EXCUSE ME YOU CAN JUST TELL??????????????????
How foolish of those of us questioning this presenter, I didn’t realise that clairvoyance was a skill utilised by public servants employed as health care professionals in NSW hospitals.
This is the most outrageous insult to ‘research’, to people with diabetes and to the many dedicated and diligent health professionals who are slaving their guts out to help people.
The look on my face to the “you can just tell” response elicited the follow-up “you don’t agree”- OH GOOD GRIEF, I said no and the response after an embarrassingly awkward pause where this professional looked bewildered that somebody would question her ability to “just know” something was …………….”Sometimes they’re rude”
WE ARE DENYING PUBLIC HEALTHCARE TO PEOPLE IN AUSTRALIA FOR UNDEFINED REASONS INCLUDING A SUBJECTIVE ASSESSMENT OF RUDENESS??????? No not abusive or physically threatening, no just “rude”.
I suggest person who is a RN CDE that you go spend half an hour in the Emergency Department of your hospital where your saintly colleagues are being regularly abused and spat upon by people in mental health and/or substance abuse crisis and learn what health care is all about. It’s an insult to all those hard working professionals who are subjected to verbal abuse and threats and yet they soldier on because they know they have a responsibility to save lives.
How dare you deny medical treatment paid for by Australian taxpayers for reasons you cannot even define. YOU SHOULD NOT HAVE THAT RIGHT! In fact I’d argue you’re bringing your whole profession into disrepute.
As you can tell I’m furious about this but not despairing. The reason I’m not totally despairing is not only do I personally know many health care professionals who aren’t like this, but there were good questions from the audience of healthcare professionals who were obviously also concerned about the nature of this presentation but during the conference I had a couple of quiet chats with CDEs I hadn’t met before. They worked in public hospitals, one just on the other side of Sydney from the offending party mentioned above, the other in the ACT. They gave me hope, their compassion, their understanding of the difficulties of diabetes care both from the patient and the practitioner perspective and their horror at the lack of professionalism in discharging somebody for non-adherence showed me that despite a few bad apples (or in this case it appears an entire diabetes “unit”) kind, compassionate, and competent care is out there you just need to sort the small amount of dirt from the gold.