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.
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.
Yes, that’s right we’ve gone from 1 viable insulin pump choice to now having a choice of 5. I checked out what’s available at the Australian Diabetes Congress (#18ADC), formerly known as ADEA-ADS conference.
After the demise of the Animas Vibe, everyone’s been excited about the announcement that the Tslim is coming to Australia. All existing Animas pumpers will be upgraded to the Tslim (as part of Animas’s contract with J&J). I and some other bloggers were invited to a launch of the Tslim at a dinner on the first evening of the conference (AMSL provided the food and drink but there was no expectation or requirement that we comment, write about or mention their product).
The Tslim insulin pump is small and “sexy”. It has all the features of the much larger and clunkier Medtronic 640 pump BUT it’s considerably less bulky and has a touch screen.
3ml reservoir (it can sill be so small because the reservoir is a pouch/bladder rather than a syringe).
Talks to Dexcom CGM
The software is automatically updatable, so tech changes don’t have to wait 4/5 years for an upgrade.
All bolus calculators etc builtin
16 different profiles for basal and bolus rates.
As I’ve said before it’s great to have more choice and whether this is the right pump for you will depend on your lifestyle. It is quite a heavy pump despite its size and the removable metal clip that encases the pump makes it heavier. If you spend time off the grid, then the rechargeable battery is going to be limiting. For me, whose idea of camping is a hotel with a view of the mountains, not having to make late night dashes to the 7-11 to buy batteries would be a definite bonus.
Frank Sita of Type1writes has an Animas Vibe and the Tslim is the pump of his dreams, he is so keen to start on the Tslim that we’re trying to help him out with the #TslimforFrank campaign. Please AMSL, let Frank be one of the first to get the Tslim upgrade (what else are friends for but to beg on your behalf) #TslimforFrank
I am a still a fan of the Ypsomed pump, because it’s small, lightweight and doesn’t require a load of button pushes when all I want to do is a quick bolus. I’ve reviewed the Ypsomed here. I am looking forward to it talking to a cgm or flash device, I understand there is talk this may happen within the next few months.
Cellnovo were also at the Congress. This is another option for people who want something a bit more like a patch pump. My comments on it from last year’s D conference here .
Finally I did visit the Medtronic stand, they announced the ‘launch’ of their 670 pump system. There is a “but” though, the CGM that goes along with the 670 doesn’t have TGA approval yet, so they’ve announced a launch even thought the new pump isn’t available yet. To stop people rushing off to consider other pumps, they are offering that if you are upgrading or moving to pump therapy now, you will get a 64- PLUS 6 months worth of CGM AND they’ll upgrade you to the 670 when it becomes available. I spoke to the reps, and a really senior business manager and they weren’t to be drawn at all about when regulatory approval might be received for the 670 CGM. Also if I were in the position of deciding whether to go with Medtronic I’d be asking for some sort of guarantee about when the upgrade will occur once TGA approval is received.
NEW ASCENCIA METER WITH APP & IT’s AVAILABLE FREE
Sometimes if you hang about on social media too much, it can seem like everyone is using CGM or Libre and it’s only us Luddites who still fingerpick. Of course the vast majority of us with type 1 D still prick our fingers. Ascension (formerly Bayer) have launched a new meter, tiny and tests assure us that it’s extremely accurate. It also has an App that you can download that gives you loads of info about trends etc. It also allows you to have a second go at getting enough blood on the strip-this avoids the annoyance of wasting strips.
You can request a free (!) meter online. “To request a CONTOUR®NEXT ONE meter, visit www.contournextone.com.au. The CONTOUR®DIABETES app is now available to download from the Apple App Store (iOS) and Google Play (Android).”
A big thank-you to Diabetes Australia for inviting me to be part of #DAPeoplesVoice, DA covered my accommodation and travel expenses and arranged a media pass for the conference. Any opinions expressed about the conference are entirely mine and do not represent those of DA. Ascencia and AMSL provided food and drink whilst showing us their products but any opinions are entirely my own and there was no expectation from either company that I would write about their product.
So it’s been a busy time here in Adelaide. As part of #DApeoplesvoice at the Australasian Diabetes Congress #18adc I’ve been to two product launches, presented at a symposium on co-design and tweeted my heart out at a full day of sessions and it’s only the first day!
So a few of the major things from day 1:
The tslim pump has launched in Australia (more on this later) but suffice to say it has all the features but a really small size. It looks set to be very popular. I put my money on Frank Sita being one of the first to switch over!
After tackling low carb I guess they decided “in for a penny in for a pound” and have tackled DIY diabetes tech as well. It’s refreshing to see that there is a patient focused approach in which the main point is that health care professionals shouldn’t abandon patients who are using this tech.
Some interesting sessions on hypos. There seems to be generalised agreement that the correlation between low a1c and severe hypos observed in the DCCT is no longer relevant. New insulins, new tech enable improved a1cs and reduced hypos.
Its a slow burn to get the voices of people with diabetes into the conversation. I think this year is a little easier than last year. The co-design symposium at which Renza, Frank and I presented got some really positive responses, thanks to Renza and Kirsty Bell for organising this.
Its been so great as always to spend time with some of the tribe.
More info including some tech updates coming soon.
Language matters is not about being polite or swapping one word for another that conveys the same concept.
The reason why people with diabetes get upset and angry about words is that they betray flawed assumptions, presumptions and inaccuracies NOT because they’ve hurt out feelings. We may get upset about rudeness, incivility and being patronised too but that’s a different issue and one that many of us can solve by simply seeking health care providers with basic social skills.
Here’s a little story to illustrate what I mean.
Jack’s GP referred him to an endocrinologist for his diabetes. The referral said:
“… Jack is a type 2 diabetic of 1 years duration. He is not adhering to treatment recommendations, having failed to control blood sugars with oral meds and life style modification. His HBA1c has been steadily increasing over the last twelve months and as of d/m/y it was 12.2%. …”
The GP didn’t cause Jack emotional distress. The words were recorded in a communication between doctors, trying to convey ‘facts’. So there’s no problem here-right? I mean they’ve been polite even used the word ‘adherence’ instead of ‘compliance’-gheez some people are just so sensitive? The problem here is with lazy doctoring!Continue reading →
UK endocrinologist and all round good guy, Partha Kar has been musing about patient involvement in funding allocations on his blog. I can’t help but respond, as Partha notes in his blog, he is thinking aloud and so am I, also playing devil’s advocate.
As a side note I have interacted with Dr Kar on twitter and he is genuinely interested in patient thoughts and is an advocate for patient involvement and the patient voice, so I trust he’ll take this as another step in the “debate”.
“Policy role can be much fun…it can also be very troubling…making judgement calls which may affect many is never easy- and it does always make me wonder- how much benefit would direct patient involvement help? I mean- lets get this right- absolutely a must, we all should do it…but how much would that help if- say- there came the question of allocating money to services?”
He goes on to suggest that patients will think in silos just like everyone else
“could patients help or even directly advise where to allocate that money?
Or would they be dictated by their own niche? …The argument that those who live with it- know more what to do with the money also falls a bit flat- when say a Type 1 diabetes person has to make a call over wider budget of diabetes- lest[sic] face it- their knowledge of living with Type 2 diabetes is the same as mine- nearly non-existent. Tricksy, isn’t it?”
So it was Thursday morning, my pump reservoir was empty but when I went to refill it, I found the button I needed to press wasn’t working. I pressed harder, I gave it a little break and put it in a cool place. Alas no, my very out of warranty pump had finally let me down.
Time and again I find myself nodding at conferences or lectures when I hear a “patient’s” story of how the internet has or does make a huge difference to their quality of life/management of a medical condition or disease and its treatments. So it was again as I listened to e-patient Dave who told his story of engagement with the healthcare system following his diagnosis with stage 4 renal cancer.
Dave’s basic request “let patients help” seems unassuming enough and his definition of ’empowerment’ also seems like a modest aspiration. Continue reading →