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A Plea for Diabetes Week

Melinda Seed writes for Twice Diabetes

National Diabetes Week (July 14-20) is almost upon us and the theme is “early detection saves lives”. Diabetes Australia have a webpage devoted to It’s about Time and I’m glad to see this positive campaign again.

My plea though is that amongst early detection and screening and pre-diabetes, the general public and particularly the medical profession don’t get confused about the urgency of a type 1 diabetes diagnosis.

Undiagnosed type 1 diabetes kills and does so quickly, particularly in children. Most of the children who are diagnosed in DKA don’t have a family history and they don’t have the typical risk factors that come to mind when ‘diabetes’ is mentioned.

PLEASE if your child(or yourself or anyone) is sick, think about the four Ts, Thirsty, tired, toilet (frequently) and thinner. If you have any of these ask your GP for a diabetes test.

Doctors PLEASE think about type 1 diabetes, PLEASE do a 1 minute test for glucose AND Ketones in your office. If high glucose and ketones are present DO NOT SEND FOR BLOOD TESTS, DO NOT SEND FOR OGTT, contact your hospital IMMEDIATELY. Parents if your doctor is still waiting for tests etc, don’t be put off, get in the car and take your kid to emergency, if they are becoming or are unresponsive call an ambulance.

NO PARENT SHOULD HAVE TO SUFFER THIS. NO CHILD SHOULD DIE OR SUFFER IRREVERSIBLE BRAIN INJURY FROM A TREATABLE CONDITION

Image from Kisses for Kycie facebook page.
Image from Kisses for Kycie Facebook page, shared to highlight the seriousness of type 1 diabetes.

Sadly too many people are being diagnosed way too late with type 1 diabetes, mostly they have been diagnosed with ‘flu’ or ‘virus’ by a doctor weeks before the condition becomes life threatening. I still don’t know why we can’t do more education with GPs on this issue, as I blogged about a few years ago. I don’t understand why it is so hard for GPs to diagnose type 1.

Playing At Diabetes

Renza Scibilia blogged last week about her bewilderment at so many professionals at a diabetes conference lining up to get their A1c checked.

Melinda Seed writes

I too have been surprised to see the longest lines at conferences being for the on-the-spot A1c checks. Perhaps all these people are wanting a free diabetes screening because they’re worried about their diabetes status-it would be charitable to assume that. I have my suspicions though, just like Renza’s neighbour who feels it’s about feeling good about their own number whilst judging yours.

I think this checking of A1c is a way in which professionals strengthen their psychological defences against the illness and vulnerability they are surrounded with. I can imagine the need to reassure yourself that you’re different from those who are being discussed at conferences, what better way than by proving you are not ‘diabetic’?

GP Dr Clare Gerada argues that during their training doctors come to believe that they are special and entirely different from patients: patients become ill but doctors do not. This belief defends them psychologically against their close proximity to sickness and suffering. However, feelings of difference can slip into feelings of superiority; …

Charlotte Williamson
British Journal of General Practice 2019;  69 (680): 150-151

I suspect that the A1c check isn’t playing at diabetes, it’s a psychological prop for healthcare professionals. Who am I to judge them for that, but here’s hoping they are led to more empathy and care for diabetes distress, rather than feelings of judgemental superiority about their intact beta cells.

I find hypo simulators more problematic. Diabetes is not a theme park experience. Even if a simulator could come anywhere near the shakes, the extreme hunger, the sweats of a normal hypo let alone the visual impairment and cognitive disfunction of a severe, should they? To what end? There is copious evidence (and isn’t medicine all about being evidence based) of the harmful effects of, and people’s death as a result of hypoglycaemia, why would a very poor imitation of a few hypo symptoms have any impact on professionals? More likely give them a false sense of confidence that they actually understand hypos when they have zero idea.

As for wearing pumps or testing blood sugars or injecting saline, none of these come anywhere near simulating what it is like to live with diabetes. I am reminded of reading Alan Marshall’s excellent autobiographical “I Can Jump Puddles”. Marshall was crippled by polio and permanently relied on crutches-amongst other problems, he was frustrated when people told him they knew what it was like because they had to use crutches for 6 weeks when they broke their leg. It’s nothing like it ok!

Not all attempts to simulate diabetes, however, are necessarily completely useless. Decades ago before there were diabetes communities online, I was at a friend’s extended family gathering. Like all good ethnic families food was piled onto my plate and I was being pressed to “eat, eat”. When I told the GP cousin I hadn’t met before that I had met my carb quota, she said “oh, you have type 1 diabetes, that is really hard. They did a study and GPs couldn’t manage to do all the things diabetics are supposed to do.”

This was the first time somebody acknowledged the degree of difficulty in diabetes and I was grateful. A good diabetes simulator although it can never do justice to the emotional and psychological impact of diabetes could potentially help make doctors aware of the burden of diabetes in terms of the additional tasks that are just piled upon us with no consideration of quality of life or just capacity to do so many things on top of a busy life.

That said, until you have it or you have cared for a child with it (the issues are somewhat different but no less intense) do not ever presume that you know what it’s like because you’ve played around the edges of some diabetes tasks for a while.

Why Doctors Oppose Self-management


When doctors resist changes to policies or practices that would support patients’ autonomy or voice, they act oppressively. Explanations from patient activists and doctors’ own understanding can lift that oppression, but often only after patients have suffered unnecessarily.

Williamson, C. The Emancipation of Patients: a theory whose time has come. British Journal of General Practice, March 2019. p150

A British Medical Journal article proposes that doctors often act in a ways that oppress patients, and improving things for patients should be understood as emancipation. When I think about this in relation to living with diabetes, I’m like ‘hell yes” why didn’t I see this before? I think we have understood nd we have been quietly fighting for emancipation for a long time, the internet has sped up the underground railway and now the time has come, as the article says for this concept to take hold.

One of the ways in which doctors hold onto the power to oppress is, the article claims by resistance to change. Williamson highlights the issue of unrestricted parental visiting in all children’s wards in the UK. This change in policy took 30 years to implement despite consistent advocacy from parents, evidence from research and the direct evidence of distress witnessed by professionals every time small children were separated from their parents.

This is not dissimilar to the current state of diabetes inpatient care. There is good evidence that inpatient care of diabetics, particularly those with type 1, around the developed world is very poor. Insulin errors in dose and timing, high rates of dka developing in hospital are attested to by people with diabetes, research (see the UK National inpatient with diabetes audit) and by diabetologists. Why is it that patients who manage their own diabetes 24/7, 365 days a year must be routinely denied access to the tools they need to manage their care whilst fully compus mentus in hospital. Sometimes people are too sick or under the influence of anaesthesia or pain relief to manage their own diabetes but that is usually only the case for short periods of time during a hospital stay.

I posit that this interference with self-management, the lack of generally accepted guidelines and recommendations for self-management is all about power.

Individual professionals are probably not sitting in their offices maniacally laughing about having their inexperienced (diabetically speaking) hands around the lives of diabetics but the systemic resistance to diabetes self-management in hospitals sure seems oppressive and something I’d certainly like to be emancipated from. We need to start asking why self-management isn’t the norm in hospitals and we need to agitate for change. It shouldn’t be up to every individual with diabetes to fight for their care when they’re in hospital. Where are our advocacy organisations? Probably too fearful of pushback and been infiltrated by doctors who act within these organisations to resist change that redistributes power.

It’s always been a battle for us to access the tools and equipment we need. Take home blood glucose monitoring as an example. Doctors were opposed to people testing their own blood sugar levels, patients couldn’t buy meters-even if they were prepared to shell out for the hospital priced ones until patients started taking things into their own hands. In my case, my first meter was built by the dad of another type 1 kid in his garage (he supplied affordable meters for kids at the Children’s Hospital in Sydney).

I suspect that the resistance to the #wearenotwaiting movement in diabetes, that is DIY closed loop pumps is similar. This movement is very threatening to doctors who generally don’t understand the technology and see a dimunition in their input. There are some great doctors who are onboard and encourage patients because of the good results they’re seeing.

It is a strange thing that being engaged with our care results in such resistance.

TypeOneSh*t:Fear & Blame

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.

Emancipating Patients

Melinda Seed

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.

Contrast this very open and unchallenged criticism  with what happens when a patient has the temerity to criticise a presentation from a professional.* 

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. 

This belief that doctors are special and superior to mere patients is also one of the main reasons why patient engagement at a system level always leaves patients burnout and frustrated-there just doesn’t seem to be widespread acceptance that patients have a valid right to participate in health systems. It’s also why many professionals feel totally fine with discounting and relentlessly denigrating patients being involved in health policy issues. We are biased, whereas they are apparently bastions of impartial wisdom.

 

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

 

#The Lowdown2019 Hypos!

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.

 

#thelowdown2019
My brain’s in quicksand

Diabetesphere: Language,Roses, Empowerment & Politics

Me & e-patient Dave DeBronkart!

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!

Read it here

2.Patient Experience, Empowerment and Engagement

I’m a huge fan of Dave DeBronkhart’s, (aka epatient Dave) work in promoting the value of the internet and patient’s sharing knowledge.

Dave asks “How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?”

Check out his slide deck from #DIAEurope2019 on why the current paradigm of the “patient” is broken and what we can do about it.

https://www.slideshare.net/ePatientDave/patient-experience-empowerment-engagement-a-business-leaders-view

3.Type 1 and Other Autoimmune Conditions

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/

4.Politics

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.

Patient Engagement:More Harm than Good?

Melinda Seed writes for Twice Diabetes

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.

The Dolores Umbridge Response

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!

What We Really Want for Christmas!

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 my santa 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 .

9.Affordable supplies

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.

1.The Cure

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!

Merry Christmas.

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.