I don’t know who this photo belongs to, but if anyone does, I’ll gladly credit. The man is a genius. If you’re living with diabetes I know you’ll be nodding at this point; if you’re not, please believe us – stable diabetes is not something that ever happens, particularly if you’re type 1.
“Is she not stable then..?”
There is nothing that infuriates a diabetic more than this question. Apart from possibly “Are you allowed to eat that?” See this image for the answer to that question. Then I promise we’ll crack on with the point of this post, but allow me my small pleasure of acerbic wit first?
A couple of weeks ago I attended the Diabetes UK Professional Conference (DPC) as one of their live bloggers. We were there to listen to the honestly quite inspiring research and studies being carried out in the field of diabetes, and report back to the wider diabetes community. I have already written about how education plays a vital role in the successful management of diabetes, but one of the other prominent themes struck me as something which the general public might be interested in hearing too.
Diabetes is a very individual condition. Anecdotally I knew this, but the scientists, doctors and researchers at the DPC confirmed it numerous times over the course of the conference. Diabetes has multiple complex causes, affects each person differently, and surprises sufferers daily with unexpected results.
Why there is no such thing as stable diabetes
Take a look at this image:
This picture represents a week of blood sugar readings for my 11 year old daughter. She is considered by her doctors to have excellent control, in the top 5% of her clinic. Anything inside the shaded green area (4.0 – 8.0) is in target. Not normal, but normal enough to minimise the risk of complications. The points below 4.0 are hypos, where she has suffered a low blood sugar and urgently needed to consume sugar. The points over 8.0 are numerous, unexpected, and also make her feel pretty rough. She or I worked really hard to prevent them, but they happened anyway.
So this is what good control looks like. Does it look stable to you?
Stable diabetes: what friends, family and colleagues can do
- Try to understand what even patients find unfathomable – that diabetes is unpredictable, affected by way more than just food; that a person with diabetes is doing the best they can, but that they might need your help sometimes.
- Believe them when they say that a high or a low is not because of something they ate, or something they did wrong. Diabetics chastise themselves more than they should already, so ask how you can help, rather than what went wrong – often they will have no idea, and nor will their doctors.
- If you’re worried about someone, ask him to check his blood sugar, because you care, for peace of mind. He may not want to, but ask anyway.
- Be tolerant; just because someone has a high or low level twice in a day doesn’t mean they’re doing something wrong. It can take weeks to identify a pattern that needs insulin adjustments, and clinics advise that changes aren’t made until a strong pattern emerges. To make changes on one result could be very dangerous. No matter how frustrated you are at interruptions to the class/meeting/journey, you can bet that the person with the hypo is more so.
- Don’t cast judgement. The person who you think “doesn’t control it well,” because you often find them in a hypo on the sofa, is probably terrified of losing a foot, or his vision, and is just keeping tight control to avoid that risk. Feeling judged is one of the reasons a person will try to hide their diabetes from others, putting themselves at more risk.
- Be aware that the person with ‘stable diabetes’ is more likely to be the one who loses a foot, or his vision. Where you see stable (because you’re not seeing hypos), his doctor is possibly seeing blood sugar levels that are permanently too high to be safe from serious damage in later life. Clinics actually recommend that if you’re not having 2-3 hypos a week, your overall blood sugar may be too high.
Stable diabetes: what doctors can do
Over the course of the conference there were sessions about type 1, type 2 (and a heap of other ‘types’ – it really isn’t simple), medications, complications, mental health, eating disorders, children, teens, pregnancy, the elderly, food choices, exercise, ethnicity, and everything you could ever think might have a connection to diabetes. Across almost every session, one message was common:
“We have to provide much more sustained support for self-management.” Simon Heller, consultant, Sheffield.
Individualised care became a recurrent theme. In a session about the psychology of managing a pervasive, chronic condition, most of those with diabetes agreed that they are in control of their numbers no more than 50% of the time; there are just too many variables to chase. The term diabetes burnout came up again and again: “It’s like pushing a boulder up a hill and letting it fall over and over again,” tweeted Charlotte.
Don’t label patients
This tweet, from Ellie, a young person with type 1 diabetes, had 20 retweets during the conference, and resonated with me. I hadn’t heard the term before, possibly because I’m so compliant it borders on an unhealthy obsession, shows in our results, and is completely unsustainable over the long term:
HCP’s need to stop using the word “non-compliant” – uncontrolled diabetes is almost always a deeper set problem #DPC16
— Ellie (@ellierosehuckle) March 2, 2016
People with diabetes wake up every morning and wonder what their blood sugar level is. Not what to wear, what the weather is like, what their plans are for the day – how healthy they are. They continue to think about their blood sugar for the entire rest of the day. Everything they do is underlined by the background noise of their blood sugar: vital exams, career-changing presentations, a great night out, sex, an amazing film; they’re all punctuated by thoughts of blood sugar, no-one who is trying to manage their diabetes ever totally switches off and relaxes. Imagine that. Even when they sleep, they don’t switch off. It’s drilled into them that they can’t afford that luxury. Consider the pressure of that burden. How would you cope with it? Could you, without an understanding, supportive medical team?
Point out what’s going well
A lot of diabetes management is about motivation. Patients who are not meeting the recommended NICE guidelines for overall blood sugar control (and only 13% do – that’s how difficult this is) feel terrible about that. They feel even worse when doctors judge them for it. Patients get fed up because it feels like no matter how hard they work, they never win. Take another look at my daughter’s graph. There are 24 out-of-range readings in there. That ‘excellent control’ still gives us 24 moments in a week when we feel like we’re getting it wrong. That’s incredibly demotivating, and it’s no wonder people just give up trying.
Focus on the controllables
A session on exercise drew on sports psychology: patients feel the huge burden of the end result – the HbA1c (the periodic blood test result used to measure diabetes control), when some hurdles along the route are quite simply beyond their control. Exam stress, a nasty cold, an argument with a friend, and all the other reasons in that huge book up there will affect blood glucose levels. We know for a fact that watching Mission Impossible: Rogue Nation, will increase blood sugar from a nice 6, to 17.2 in the course of half an hour. She’s not old enough to fancy Tom Cruise, so I imagine it was all that breath-holding in the water tank. Anyway, you see my point.
Back to sports psychology: instead of focusing on the end result, the win or the loss, look at what the patient can influence. By focusing on the process, the small things that can be done, the achievements made since last time, doctors put some of the control back in the hands of their patients. The snowball effect of that can mean increased motivation, and ultimately, a better long-term outcome.
Treat each patient as an individual
This slide was part of a presentation about the difficulties teenagers have when they transfer from paediatric to adult care. But it could be reflective of any patients’ feelings about medical appointments when things aren’t going well for them.
Lots of young people use insulin pumps, some have continuous glucose monitors. Far from being a fix-all, these devices don’t automatically result in better control. They are expensive, however I was astonished to hear from some young patients that rather than support to improve their control, they’ve received threats of what will happen if they don’t:
“You wouldn’t take my [insulin] pen off me; why would you threaten to take my pump?” declared an emotional young lady as she described one of her clinic appointments.
Mission Impossible: living in the real world, not the clinic
Finally, think about what you’re asking for if you’re looking for ‘stable’ diabetes. For a health care professional, it’s all about the clinical results. Of course it is, your job is to make people well; it must be incredibly frustrating not to be able to do that. However, when a person with diabetes leaves the clinic, they must live a life; a life which contains complicated, incessant medical decisions, but a life which accommodates those, rather than enslave itself to them.