Category Archives: Advocacy

How Can We Engage Doctors to Change Behaviour?

Advocacy, Fun
Melinda Seed

Lots of talk of patient engagement around the traps of late and following some discussions on Twitter I’d like to share some  common problems with engaging doctors to change their behaviour.

Just switch the word “patient” in this definition of patient engagement to “doctor” in each case and we’ve got a handy way of thinking about doctor engagement.

Patient<Doctor> engagement…a concept that combines a patient’s <Doctor’s> knowledge, skills, ability and willingness to manage his own health and care with interventions designed to increase activation and promote positive patient<doctor> behavior.

My concern here is with engaging doctors to improve care for those, in any way involved with providing medical services to people with type 1 diabetes. The scale of the problem with inpatient care of people with diabetes and its consequences are well known and documented. The UK diabetes inpatient audit showed:

40% of inpatients on insulin experienced one or more insulin errors.

1 in 4 people with type 1 had a severe hypo

1 in 25 patients with type 1 developed DKA during their hospital stay.

One of the most common problems is doctors’ lack of education, or is it poor behaviour that makes then deny people with type 1 insulin when they’re not eating?

Whilst we’re at it, anyone asserting that there are lots of reasons why people with type 1 develop DKA whilst in hospital needs some activation towards further education.  There aren’t lots of reasons, the only reason somebody with pre-existing diabetes develops** DKA whilst in hospital is severe shortage of insulin. This is an example of not holding people accountable, ‘lots of reasons’ lets HCPs off the hook. THIS behaviour of excusing inadequate medical care needs to stop too if we’re ever to change the behaviour of those providing medical services.  As page 8 of the summary report correctly states:

“DKA and HHS are serious conditions which can have very serious consequences for the patient. They are preventable and should not occur during a hospital admission.”

Let’s get behaviour change happening in hospitals. How about some motivational interviewing of staff when we’re admitted? I think I’ll start asking a few questions to assess their knowledge and then take the opportunity to provide a learning experience for them, perhaps refer to some structured education? Maybe scare tactics? What about some cool tech that sends them an SMS every time a patient’s sugar goes out of range?

I don’t know about you but I’m still needing more strategies to deal with these non-compliant avoiders    Do you have any ideas, maybe we could write a paper or run a course or something?

*Quote from, https://www.healthcareitnews.com/news/what-does-patient-engagement-really-mean

**The one in 25 stat refers to those who enter hospital without DKA but develop it whilst in the ‘care’ of the hospital, not to those who may enter hospital with DKA.

Language Matters & Compliance Officers

Advocacy, Diabetes wisdom, Living with t1D, ,
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 →

‘Patients’ Vital For Sharing Conference Info

Advocacy, Uncategorized

 

Melinda Seed

It’s always great when a piece of research confirms what you know to be true but others have doubted. It was super good timing when I came across this great finding published just a couple of weeks ago in the Journal of Internet Medical Research, 2017, August 17 19 (8):e 280

Engaged patients increase information flow, expand propagation and deepen engagement in the conversation of tweets compared to physicians and scientists.

It concludes that Continue reading →

Beyond Normalising Mental Healthcare in Diabetes

Advocacy, Diabetes wisdom, Living with t1D, , , , ,

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

Advocacy, Living with t1D
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 →

The A1c, More Than Just a Number

Advocacy, Diabetes wisdom, Living with t1D
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 →

Finding Your Diabetes Sweet Spot

Advocacy, Diabetes wisdom
Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

Is there such a thing as enough in diabetes management?

Your A1c is too high, you get it lower and your weight increases, you exercise more but the resultant highs and lows lead to an increased A1c. I know of people who’ve been told their a1c is too low, they’re at risk of hypo unawareness. You change your diet and you get more lows and for no known reason your lipid profile becomes crap and so on and so forth.

At this point I go one of two ways. Continue reading →

Sitting on One Butt Cheek for Diabetes

Advocacy, Fun

 

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

I’VE HAD ENOUGH.

I’m officially burnt out, not from my 4.5 decades of diabetes but from the  relentlessly pathetic public awareness campaigns.  I give up*, you just have to laugh otherwise you’d cry or lapse into depression. The dust has just settled on National Diabetes Week in Australia and each year just seems to get worse.

Who  could possibly think that DNSW’s Standing on One Leg event was a responsible, constructive way of doing ANYTHING for diabetes let alone being an appropriate way of tackling preventable amputations?  Seriously, do they put some PR interns with no knowledge of healthy psychology, fear appeals or diabetes in a room and tell them to come up with an idea in 10 minutes and then run with the most ridiculous one? Certainly seems so. Continue reading →

I Want a Lawyer for my Diabetes

Advocacy, Good Medicine, Living with t1D, Uncategorized
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

Advocacy, Diabetes wisdom, Living with t1D, Uncategorized
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.