Category Archives: Living with t1D

If Healthcare Really Were Patient-Centric

Melinda Seed writes for Twice Diabetes

Patient-centred care is a bit of a buzzword and a few sessions at #ADSADEA were devoted to it. There’s no definition of the term but it seems to refer to individual health practitioners listening to and responding to patient’s concerns during consultations. That’s all good and well but is that all there is to patient-centred care?  It got me wondering about what the health care system would be like if it was run by people with diabetes instead of the government/doctor/bureacracy mash up we see today.

Here are some ideas I had: Continue reading

Beyond Normalising Mental Healthcare in Diabetes

The psychosocial aspect of diabetes is a bit like the weather everyone’s always talking, but nobody does a thing about it. Such was my view preceding DX2 Melbourne where I was one of a cast of thousands participating in a webcast about mental health and diabetes.

The consensus view (I think it was unanimous) was that psychosocial care should be normalised as part of diabetes healthcare. I agree 100% with this. I recommend Renza’s post at Diabetogenic about the webinar and particularly the importance of ending the stigma around mental health.  Frank of Type 1 Writes was also on the panel and has written insightfully about this topic too.  The focus of the panel discussion was on seeking help at times of distress but I’d like to take things one step further than this and talk about

Prevention!

It is my contention that not only does standard diabetes care fail to heed prevention strategies for psychosocial distress but it actually causes or exacerbates mental health issues in people with t1 diabetes. Continue reading

Don’t Be Just another Brick In the Diabetes Wall

Melinda Seed writes for Twice Diabetes

Healthcare is a highly structured environment and everyone has their assigned rights and responsibilities that belong to those roles.  Those within the system are highly motivated to maintain the status quo to keep the forces of chaos subdued.

Diabetes, particularly type 1 is troublesome to the health status quo. For starters none of us can ever be the ideal patient. We can’t be healed in the “you’re good as new” kind of way and the professionals have to hand over their traditional roles to us. We are the ones doing the injections, the blood testing and keeping track of our health.  It is little wonder that many professionals view diabetics as troublesome patients.

As if this isn’t bad enough, many of us with diabetes (and other health conditions of course) choose to speak to each other and publicly about living with diabetes and we’ve been able to do so very effectively via social media.  This sort of activity is threatening to the system and the gatekeepers want to fight or control it. Continue reading

There’s No One Size Fits All

Melinda Seed writes for Twice Diabetes

I recently came across a health/medical article that expressed concern about the level of variation in paediatric diabetes treatment between different paediatric endocrinologists.  I thought the assumption that there was one best practice approach interesting especially in light of the statement, Continue reading

Patients Excluded Conference ‘Values’ Patient Choice!

Melinda Seed writes for Twice Diabetes

 

Sometimes Twitter does your head in, and I’m not talking about the trolls.

 

 

 

Last week DiabetesUK tweeted 

 

Possibly seeing a marketing opportunity, @DiabetesAU (NOT it must be noted Diabetes Australia but the twitter handle of Natalie Wischer, who is apparently the CEO of the National Association of Diabetes Centres NADC) was quick to tweet her whole-hearted endorsement-presumably on behalf of NADC, as indicated by the first person plural.

We agree! We will discuss this & more at the Australasian Diabetes Advancements and Technologies Summit (ADATS)

Yippee!! I thought, how great there’s going to be a whole conference on diabetes technology in Australia AND they are totally into patient choice!

I rush off to the link so thoughtfully provided at the end of the tweet to book tickets, only to find this conference is patients excluded. You need a health care provider number to register. So no patient choice here BUT never fear patient choice is going to be discussed by a bunch of doctors and DNEs.  My irony meter is going off the scale.

Don’t despair though fellow-patients, despite the ban on our attendance, I’m assured that the patient voice will be heard. One person with diabetes and a health care professional are going to present on this “very important topic”. Ah right, I check the program, a person with diabetes is going to get 5 MINUTES in the program to present the consumer perspective and a psychologist (who doesn’t have diabetes)  is going to get 20 MINUTES to speak about psychological impacts.

Whilst I guess 5 minutes is better than no minutes for a consumer voice to be heard-I’ve got to say I find the 5 minute time slot rather insulting, especially as the speaker, @RenzaS is an experienced and professional presenter with many years experience at DAVic and in advocacy, it’s not like she can’t handle a longer time slot. 5 minutes is the allocation for “hearing the patient voice”. Hmmmm.

That aside, however, neither a 5 minute consumer slot or a psychologist presenting professional insights is patient inclusion, nor does it have anything to do with supporting patient choice in technology. Inclusion and patient choice is about allowing patients to access information to enable informed participation in healthcare.

I understand that professional organisations run conferences for their members and sometimes those organisations exclude non-members-it’s their conference after all. I also understand prohibitions on “consumers” attending conferences where drug companies advertise their products.*

This is fine, just don’t boast about your support for patient choice when your implementation of that support is to discuss it at a conference of health care professionals from which patients are deliberately excluded.  This just serves to highlight how very keen many professionals are to exclude “patients” from the dialogue of healthcare.

Without access to information, the patient will never be able to take control of their health decisions, I wonder if that’s the real reason we’re excluded, as the old saying goes, knowledge is power.

 

*@DiabetesAU tweeted to me that patients could not attend because of pharma sponsorship of the event. I have perused the program http://nadc.net.au/wp-content/uploads/2017/03/ADATS-Program-26.6.17-zip.pdf as at 7pm 3rd July 2017  and I can find no disclosure of links to pharmaceutical or other commercial enterprises at all. I would have thought transparency on commercial sponsorship would have been desirable to those attending, it is to me and I’m not even subject to the rules on pharma marketing.

The A1c, More Than Just a Number

Melinda Seed writes for Twice Diabetes

I was one of the many pwd who was stunned back in 2015 when the UK’s National Institute for Clinical Excellence (NICE) issued its Guidelines for Type 1 Diabetes in Adults. These guidelines recommended a “target” HBA1c of less than 6.5%.  The previous target was 7.5%

What I found stunning was that so few people managed to achieve an a1c of 7.5% or less and yet here they were setting an even lower target. For the record -the UK National Diabetes Audit showed that 29% of adults with type 1 recorded an a1c <7.5% (or 58mmol in the new measure) in 2015/16 AND fewer than one in fifteen (i.e. less than 10% of pwd) recorded an a1c of less than 6.5%.

It makes you wonder what exactly is the point of setting this number, what does it mean and is it sensible to set a target that appears cannot be achieved by 90% of people.

The anxiety is real for many! (Thanks to Type 1 Diabetes Memes)

Continue reading

6 Things To Consider When Choosing D Technology

Melinda Seed writes for Twice Diabetes

Despite a lot of words to the contrary there is no one-size fits all solution for diabetes management. With choices about technology, different versions of similar technology, different insulins and different diets it is actually quite a complex business to decide what you’re going to do. Sadly, I think healthcare doesn’t really understand the notion of patient choice-they do in theory but practically they can’t stop themselves from knowing what’s best. (See for example this, that refers to patient preferences not to use CGM or a pump as “barriers” and assumes tech is universally beneficial!)

So this is the sort of stuff I consider before adopting a new piece of tech, I’d be interested in hearing if you have other ideas or experiences in deciding upon tech. Continue reading

I Want a Lawyer for my Diabetes

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

So English endocrinologist Partha Kar asked on twitter if self-administration of insulin is always appropriate.

It got me thinking, when ISN’T it appropriate? It seems to me that when you’re diagnosed with diabetes you get some fairly rudimentary education and then you’re sent home to calculate dosage and administer a potentially lethal drug.  Multiple times a day, day-in-day out we do this.

So where do health care professionals get off declaring us incompetent to do this and denying us our basic rights when we are inpatients in hospital? Continue reading

Fear Tactics & Psychological Harm

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

It’s Day 2 of Diabetes Blog week and we’ve been asked to talk about the other half of diabetes, the psychological side of diabetes. There’s already been some great posts from a personal perspective about this, for example, Georgie’s blog at Lazy Pancreas or Tim’s blog. For the full list click here.

I’d like to talk about the psychological harm some diabetes organisations are imposing on the very people they’re supposed to be helping-those with diabetes.

We’ve all seen those ads based on fear, the horror stories of complications and the frightening statistics telling us to avoid or “manage” diabetes. Frank blogged about this last week, Type 1 Writes.

So what’s the problem, shouldn’t people avoid diabetes and/or avoid complications? Well yes, and if doing either of those things was as simple as giving up smoking then the campaigns might be justifiable BUT it’s not that simple and that’s where the problems start.  You see, if you get a terrifying message and yet you have little power to change the situation that gives rise to the terrifying consequences then you are likely to act in a negative way.

So if you have type 1 diabetes there’s nothing that can be done to reverse it and despite even the most diligent efforts and best technology it isn’t possible to entirely normalise blood sugars. In these circumstances the research supports that these fear-based messages cause people to engage in negative or health-defeating behavior. See for example, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3678850/ , and Goldenberg J.L., Arndt J. The implications of death for health: A terror management health model for behavioral health promotion. Psychological Review. 2008;115(4):1032–1053.

So these fear messages have a negative effect on people with diabetes. It appears that diabetes organisations such as DiabetesNSW who have recently been unapologetically tweeting mortality statistics without any context or background either ignore this or they Screen Shot 2016-05-17 at 8.50.36 PMare quite happy to cause harm to the people they’re supposed to represent in hopes that they are having a positive impact on those who are at risk of diabetes.

Is this ethical? Are you happy to be a member of, or have your tax dollars support such behaviour?  I always thought the first principle of intervening in health was “do no harm”. Guess they’ve abandoned that notion. Shame.