All posts by Melinda Seed

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

Diabetes in Hospital #18ADC Research

Melinda Seed writes for Twice Diabetes

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.

 

https://bmjopen.bmj.com/content/3/11/e003583?cpetoc

This quote really sums it up for me!

PS. I was overjoyed that Rebecca’s presentation was awarded the best ADEA Abstract at the 2018 Australian Diabetes Congress #18ADC. I really hope that the HCPs who need to hear this were listening!

MAJOR SYDNEY HOSPITAL DENIES DIABETES CARE BECAUSE…

Melinda Seed writes for Twice Diabetes

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 carefor 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.

TSlim, YpsoMed, Cellnovo, Roche & Medtronic Choices!!

Melinda Seed

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.

                               

Features:

  • 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.
  • Rechargeable battery.

 

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.

 

Diabetes Congress Day 1

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!

Diabetes Australia has stepped bravely into the low carb ‘discussions’ by issuing a position statement.     https://static.diabetesaustralia.com.au/s/fileassets/diabetes-australia/8b4a8a54-f6b0-4ce6-bfc2-159686db7983.pdf

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.

https://static.diabetesaustralia.com.au/s/fileassets/diabetes-australia/ee67e929-5ffc-411f-b286-1ca69e181d1a.pdf

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.

 

 

 

Here’s Looking at You, Retinopathy Reminiscences

Through the window the last rays of sunlight are disappearing,  the waiter stops by  “Now you can see each other” he says, putting the flickering candle down between the glasses and the pate. There’s a momentary pause in our chatter, “You have no idea how true that is” Maryanne responds. I nod and toast my thanks to modern ophthalmology as I take a sip of wine.

Maryanne lives in Brisbane, I’m in Sydney and it’s been difficult to organise this catch-up drink. M is visiting Sydney for a conference, the weekend she arrived I was in Melbourne for my own conference so we’re meeting for an afterwork drink on Monday night. We skip lightly over the last 15 years, within a few minutes we’re talking about our eyes. Drawn to share again those dark experiences that nobody else really understands. Those years with impaired vision and the threat of blindness. We were young then, now we’re middle aged and feel as though that experience could have happened to someone else.  We talk about how that fear influenced the decisions we made and the lives we led back then though and how that’s impacted on where we are now.

Next we’re discussing whether or not we should undertake PhD studies and career changes. We know that if our eye problems had happened 20 years earlier we wouldn’t be sitting here, able to see each other, able to drive and contemplate more post-grad study. I feel more able to envisage the future now than I could as a younger diabetic, I worry about what things this disease can still throw at me but so far I’ve survived its best efforts.  If you happen to be deep in the trenches fighting retinopathy or some new complication, take heart, treatments these days are excellent and there is plenty of great life on the other side.

It’s now dark outside and the windows have turned into mirrors. I look up and see my reflection, I tell myself I’m doing okay for almost half a century of diabetes.

All things shall be well and all manner of things shall be well.” Juliana of Norwich

When Language Causes Doctors to Behave Badly!

 

Melinda Seed

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

My D Team: Me, Myself and I

The only player on the D mgt court!

The other day somebody innocently tweeted that diabetes management was a team effort.That got me thinking and although it’s dangerous to push metaphors too far I don’t believe thinking of diabetes management in terms of a team is appropriate or helpful.

The team analogy implies that everyone has a role to play at all times and most importantly that everyone shares the joys of victory or the bitterness of defeat. This is simply not true. It is me and me alone who feels the hypos, the highs, the fear and reality of complications.  Every finger prick, every needle, every blood test, dilated pupil exam or pump site change is felt by me alone. It is me who savours the ‘victory’ of a straight line on the Libre after eating pasta or the relief of a ‘clear’ complication screening.  The closest I come to sharing this is the empathy  in the diabetes community when rejoicing or commiserating with those of us who know exactly what it’s like. Continue reading

A New Pump on the Aussie Block: Ypsomed!

A new pump is available in Australia, right now. The Ypsomed (pronounced ipsomed) has been TGA approved and will be reimbursed by your health fund and the consumables are on the NDSS.  I was invited to attend a soft launch of the product and provided with a loan pump to ‘test-drive’. Ypsomed covered my travel and accommodation expenses to attend this event and lent me a pump to test drive. I have not been paid or expected to  write about or comment on this or any other product.

 

Size comparison, Ypsomed at top, my current pump below.
My current pump (on left) alongside the Ypsomed.

The first thing I noticed about the Ypsomed is its size. It’s small and lightweight. I REALLY like that it is much smaller and much less bulky than my current pump (which is only a few months old and yet is the biggest pump I have ever owned).

 

 

It has a large, touch screen. Despite being small, almost the entire front of the pump is the screen, so it’s easy to read and use.

The pump is made in Switzerland (which has a reputation for quality in manufacturing) but 24/7 support is local rather than using an international call centre.

I was surprised to learn that Ypsomed has a long history of involvement in diabetes devices. They were, in fact, behind the Disetronic pumps available in the 80s through to the early 2000s. The current pump has been available in Europe since 2016.

 

The pump has a glass cartridge, which appeals to me as I feel the insulin may be less likely to degrade in glass and hope that at least there will be a tiny bit less plastic diabetes waste around as a result. Here’s hoping that Novo start bringing the pre-filled cartridges into Australia (they are currently available in Europe).

It is water proof (although I haven’t tested this…yet) and takes a AAA alkaline battery (the pump won’t accept lithium batteries).

A downside at the moment is that the pump doesn’t ‘talk’ to any of the CGMs, so blood sugar readings would need to be entered into the MYLife app manually in order to calculate correction doses. Ypsomed staff assured us that they are in talks with most of the CGM and Flash manufacturers

I understand that the Ypsomed blood glucose meter talks directly to the app for bolus calcs etc.

I haven’t actually attached the Ypsomed pump yet-I plan to in the next day or two (no sense wasting the full insulin reservoir in my current pump.  I shall update this review about usability and button pushes and also the use of the app once I’ve worn it for a while.

For a couple of other early reviews check out:

Bionic Wookee

Diabetogenic

I am excited about a pump that is smaller AND the fact that more players are entering the insulin pump market. I was worried with the withdrawal of J&J that we might end up with only one pump in Australia.  I’m sure that every pump has its own pros and cons but if you are looking for a pump or an upgrade make sure you check out all available options. Some educators or endos tend to push the pump that they’re most familiar with, I’m all for choice-so make sure you see a sample of ALL the pumps in the Aussie market before you commit.