Recently, two unrelated publications, one an Australian blog and the other a UK peer-reviewed medical journal, have given voice to the same topic. Their different and highly complementary views combine to offer a powerful message, close to the heart of many with diabetes as well as ours here at SD.
On 7th August, Renza Scibilia wrote her daily blog about living with diabetes as if it were a letter to a diabetes doctor in a new clinic. It started with the words ‘you and I are on the same side. My side’, then continued expressing the hope of partnership, of mutual understanding and the absence of judgement about her life with diabetes. Above all, she expressed the desire for recognition that even when diabetes isn’t going too well in her life, that she is always doing her best.
Her message is clear: respect my expertise and I’ll respect yours, so we can have a great and useful relationship. This post attracted a number of comments, including one from a diabetes educator who said ‘you have helped me become a better clinician’. It occurred to us that the idea of a ‘letter of introduction’ such as this, should perhaps be an option in all clinics, to help break down the assumptions, myths and negative judgements that, however inadvertently, often underlie the consultation words from a health professional towards and about the person with diabetes.
Which helps to introduce the second publication, from the respected journal ‘Diabetic Medicine’. In the first study of its kind, the authors interviewed parents of children with Type 1 diabetes about the challenges of keeping their children’s blood glucose in range, in the context of their everyday lives.
Apart from the surprise that such a qualitative study had not been undertaken before now, there were two major new findings in this paper – one being that parents often had ‘home’ and ‘away’ blood glucose targets – the latter being more relaxed than the former. This reflects the desire to ensure their child was safe from hypoglycaemia and able to enjoy the event they were attending without their parents. It also showed their recognition that other care givers at events would not have the detailed knowledge that they had about the intricacies of diabetes-related actions and their own child’s condition. This in itself was hugely moving, the parents wishing ‘a normal life’ for their child and reassurance for themselves that hypoglycaemia, an ever present fear for parents, was unlikely outside of their direct care.
The second finding was in relation to consultations with health professionals, who, although excellently reviewed in terms of knowledge of diabetes and its treatment, were universally found to expect a ‘text-book’ achievement of recommended HbA1c levels, without apparently realising the realities and complexities of life with diabetes that the parents had to face. It seemed to be summed up in the comment by one parent ‘you’ve tried really hard…and you get ‘oh their HbA1c is not good enough, you need to do better’. In this single sentence, the sense of demoralisation, frustration and unrecognised effort rings out.
Unsurprisingly, one of the conclusions of the paper is that health professionals need to be more empathic, more recognising of effort as well as results and have a training that engages in the everyday detail of living with diabetes as well as the medical and scientific knowledge which currently prevails.
What are we saying here by bringing these two pleas together? Quite a simple message really, one for health professionals as they invite people living with diabetes into their consulting rooms, and one which is really quite easy and cheap to achieve. It’s summed up by something a colleague of ours said many years ago ‘always remember to honour effort as well as outcomes’.
It’s only the sheer effort and doing their best by people who are in the complex maelstrom that diabetes can present in life, that gets any outcome at all. And the only judgement that effort deserves, is a massive ‘well done’ at each and every visit. Please, just do it.
Diabetogenic: Dear Doctor: 7 August 2015
Lawton, J., Waugh, N., Barnard, K., Noyes, K., Harden J., Stephen, J., McDowell, J., Rankin, D. (2015). Challenges of optimizing glycaemic control in children with Type 1 diabetes: a qualitative study of parents’ experiences and views. Diabetic Medicine , 32, 1063-1070