All posts by Melinda Seed

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

Life in a Virtual Diabetes Community

The other day I saw this non-diabetes related exchange on Twitter and it really resonated:

Over the last few weeks in particular I’ve seen a number of people lamenting a perceived loss of civility/kindness/supportiveness in the diabetes online community.  It grieves me that people would have negative experiences participating in online communities. I have spent the last twenty years involved in this community and in the very early days of RealityCheck and the Type 1 Diabetes Network I invested emotionally, mentally and financially into building a community. During those early years we were attacked by a small number of health professionals (indeed a dietitian contributed nasty jokes about retinopathy anonymously to our forum when we failed to ‘enforce’ the messages he believed needed to be sent), a small group of people felt we weren’t inclusive enough so they spent time criticising us online and sending nasty reviews of the website to publications, people visited the forum paid for from the personal funds of the founder and yelled their criticism and aired their minor grievances there.

All this to say a degree of anger/nastiness/personal attack is not new in the diabetes community.  What keeps me involved though is that for every person with whom I’ve had some sort of less than ideal experience online, there’s been 10 people from whom I’ve received empathy, validation, useful information and a warm fuzzy feeling. I would be so much the poorer, emotionally, intellectually and in physical and mental health  without the online diabetes community AND I want others to experience this too. I came to realise that many of those who behaved in what we perceived were less than ideal ways were most in need of the help offered by peer support and their depth of feeling was indicative of just how important the community was.

All communities are made up of flawed individuals and we can’t always be at our best. I cherish the authenticity of real interactions and sometimes these can be uncomfortable-but the community needs diversity and will be stronger if independent thinking is allowed and sometimes we have to agree to disagree.

There is nothing more prejudicial to community life than to mask tensions and pretend they do not exist, or to hide from them behind a polite facade and flee from reality and dialogue. Jean Vernier

Of course there’s often a tricky balance between critique and constructive disagreement versus negativity and point scoring that may degenerate to nastiness. When I look at the rest of Twitter, I am really encouraged by the #DOC, there are occasional less than ideal interactions but generally there is a civility and search for mutual understanding and a sense of fairness that far exceeds that of most other social media interactions. Jean Vernier has wonderful insights into community life, being the founder of the world wide L’Arche communities of people with and without intellectual and developmental disabilities, he says:

It is difficult to make people understand that the ideal community doesn’t exist and that the equilibrium and harmony they imagine possible are things that come only after years of struggle, and that even then come only as flashes of grace and peace.

Community is the place of forgiveness. There are always words that wound, self-promoting attitudes, situations where susceptibilities clash. That is why living together implies a certain cross, a constant effort and an acceptance that comes from daily and mutual forgiveness.

I’ll leave the last word to Cherise who was recently on the receiving end of criticism that was not based on fact, and upon which a bunch of people on either side (including me) weighed in without doing a fact check first. Her response is all class and shows commitment to the community that goes way beyond her individual interests and gives me something to aspire to!

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

Language Matters & Compliance Officers

Melinda Seed writes for Twice Diabetes

In the midst of  the launch of the UK’s statement about language and diabetes (good to see them catching up with the pioneering work of Australia on this) I’ve been thinking about the sort of communication that I’ve found most helpful around diabetes.  Here are some of the things that have stuck in my mind as being really helpful over the years. 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.

 

Diet Wars, Again!

So the diet wars are hotting up again, I have a sense of deja vu… again.

I have had diabetes all my life and soon I will notch up 50 years. I’ve seen the advice chop and change over that time. Firstly it was eat loads of carbs at breakfast, morning tea, lunch, afternoon tea, dinner and supper. The distinction was made between starch and sugar. So it was thought that a piece of fruit would ‘burn up’ in your system more quickly than, say a slice of white bread.   Then there was eat a balanced diet, then there was the Glycemic Index diet, then there was the carb counting and insulin dose ratio approach. Now we are learning that protein impacts upon blood sugar, as does eating fats but only if consumed with carbohydrate-so those after tight control are counting and blousing for protein and fats as well as carbs.  Lately  very low carbohydrate diets have been gaining attention and some very zealous followers. Continue reading

Should Clinicians Be Involved in Health Policy Decisions?

Melinda Seed writes for Twice Diabetes

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?”

Continue reading