Diabetes and the C-Word

This post is slightly unusual – it’s not about how we as people with diabetes might do things, it’s about how our health care professionals do things.

I’ve written in a couple of previous posts about the feelings of guilt and shame that can often feature in people with diabetes – and this post is about one of the bit sources of this.

The C-Word I’m talking about is Compliance. It is also accompanied by The N-Word of Diabetes – Non-Compliance.

These are old fashioned terms that are still, regretfully, in use by many doctors and nurses – and through their use they still filter down to students.

Compliance is all stick and no carrot. It implies that whatever the doctor says is what works and is what you must do. It also implies that any deviation from The Plan is all down to you, and that you are guilty of The N-Word. Non-Compliance.

Non-Compliance is a term that is used lightly in isolation – but from there it takes on a life of its own. As Jacqui from Diabetics with Eating Disorders said at the Diabetes Professional Care conference in November,  it follows you elsewhere. You become known as a patient who is Non-Compliant. It becomes a much bigger label that sits over the top of all other information about you. Within clinic you become a Non-Compliant Diabetic. If you every have to interact with any Mental Health services, you become a Patient with a history of Non-Compliance.

It is a lazy shortcut that enables HCPs to absolve themselves of any blame if their treatment fails – and to become deaf to your concerns about their plans.

We should ban the use of compliance and non-compliance. They are outmoded, outdated, and do not reflect the reality of managing almost any long-term conditions.

There’s a newer word that some people use, which I also think is crap. Concordance is supposed to be about a partnership between HCPs and Patient in relation to the treatment of a condition. This is, I suppose, a step forward. It slightly moves away from the idea that the patient does what the HCPs says, no matter what, towards a compromise position where the HCP and the Patient find a solution that works for both sides. It’s still unsatisfactory, to my mind.

A good ‘concordance’ model relationship requires an HCP who is open to creative thinking and coming up with innovative solutions to individual patients problems. There still aren’t that many of these, and so many are still confronted with a ‘take it or leave it’ approach.

As people with diabetes, we know that HCPs give us guidance and provide us with the tools – but we largely formulate our own management plans for our disease.

The only situations where a concordance or compliance approach would actually work to achieve good glycaemic control would require lifestyle rigidity that is simply unacceptable.

Instead we need to look more to sociology for how to describe our management relationship. In sociological models of chronic illness there are four main coping strategies identified: denial, normalisation, resignation and accommodation. It is the last of these that I’d like to see incorporated into clinical language more, alongside another word, acceptance.

Acceptance is an important part of being able to live well with diabetes. Understanding the disease, and its the potential complications, is the first step to being able to decide how to take your approach. It is the absolute cornerstone.

From here, accommodation is how we make diabetes fit into a rich and full life. In the ‘normalisation’ strategy, patients take on diabetes as their defining social role, where as accommodation accepts the role of being a ‘person with diabetes’, but this slots in among the other roles we all have, colleague, partner, sibling, parent, music buff, sports enthusiast, etc.

Accommodation is the only strategy that has enablement at it’s heart. Conversations about management adopting this strategy start with questions like ‘how can I do X?’ from the patient rather than ‘you must do X’ or ‘you can’t do X’ from the HCP in the old models.

This is hard for HCPs to take on – they see us for small snapshots, and often at times when we bring our ‘Diabetic’ role to the fore as that’s what we’re there to talk about, so this is something WE need to lead.

How can we do that?

1. Challenge any and all uses of the C-Word and N-Word you hear in clinic.
2. Go to your appointments with clear ideas of what you want to get from it. Do you want to know how to better adjust your insulin to enable you to cycle for more than an hour without a hypo? Do you want to know how to make adjustments to your basal injection times while hopping around the globe from timezone to timezone? Do you really want to be able to eat a whole family-sized sticky toffee pudding without peeing yourself inside out from hyperglycaemia? Ask these questions. Make a list. Don’t accept ‘You can’t’ as an answer.
3. When setting goals with your diabetes team, never let yourself feel like you need to make goals based on the numbers. A lower HbA1c means nothing if you put yourself through misery to achieve it. Realistic goals that have meaning to your life are much more valuable, and achievable, than chasing numbers.

Diabetes in the 21st Century is very different to Diabetes in the mid-20th, it’s about time our approach to language and management partnership started to take this into account – and if your clinic isn’t willing to make this shift, kick up a fuss.