People with diabetes are generally satisfied with the care they get from their doctors but many believe they lack understanding of what the disease really means for the patient in everyday life.

A survey of more than 1300 Australian people with type 1 or type 2 diabetes found that there were seven key areas of unmet needs related to person-centred care.

The responses from the second Diabetes MILES-Australia (MILES-2) study showed that people with diabetes want health professionals to better understand the complexity and full impact of the condition, that judgements/assumptions are not helpful, and that they are experts in their own diabetes.

Researchers from Deakin University in Victoria said the findings underlined the need for providing empathic, patient-centred care.

When asked to complete the question: “I wish my health professional understood …” these are some of the replies form people with diabetes:

1. Diabetes is hard: “’What it’s like to feel like a pin cushion when it comes to type 1 insulin injections. They all say, ‘Take 4 injections a day, EVERY day’, but have NO idea what it’s like to do that day in, day out.”
2. Side effects and discomfort with treatment: “I worry so much about the insulin making me fatter and fatter. Every time it is increased I dread the extra weight that inevitably comes.”
3. Diabetes is relentless: “It is a full life experience, it’s not something you can just do and take a break from whenever you feel like it. It’s there 24/7 and its draining.”
4. It’s time consuming: “That managing T1 is VERY time consuming. So much so, that I worry about working full time as I cannot give it as much attention as I would like, and/or I don’t have time at work to do as many BG readings etc.”
5. Maintaining stable glucose levels is complex; “That you can do all the right things to bring your blood sugar under control and the stresses of everyday life can sometimes sabotage your best efforts.”
6. Diabetes isn’t always my only priority: “I don’t think anybody can live their whole lives with a disease they happen to have as their main focus. You just want to keep it under control enough so you can spend your time doing the things you like to do!”
7. Social isolation: “I feel alone with my diabetes, there are lots of things people don’t tell you…”
8. The emotional impact (burnout): “I wish they understood that living with diabetes is a constant worry and constant upkeep and not reaching your personal goals with the disease makes you upset and feel worthless. I want to be able to eat what I want, like before. I wish they knew that I felt helpless and felt like I can’t do what other people do without thinking about my disease.”
9. Negative assumptions and judgements: “Young doctors telling you how you should live, assuming everyone smokes and drinks and overeats.”

The survey results are published in Diabetic Medicine.