Jean Langford is a diabetes advocate from Ireland who is also training to be a dietitian. Now a member of the International Diabetes Federation Europe’s YOURAH network, she was diagnosed with diabetes at age 11. Her family knew the seriousness of diabetes only too well, as her grandfather and her uncle had lived with the disease. For them, life had involved a strict and inflexible regime without the technology and treatments available today.
“I, too, was supposed to follow a one-size-fits-all insulin regime – textbook diabetes care as opposed to tailored care that addressed my actual needs in day-to-day life. I had no idea how to manage it well or adapt it to my life,” Jean explains.
“My parents tried to keep things as normal as possible and I was adventurous. However, I was often unwell, being either very high or very low. It was all very reactive. I was given very little information about how everything worked, even though it was my mum and I who were making the daily decisions on my insulin doses. I feel as if we weren’t trusted with the information to make informed dosing decisions. Diabetes education would have made so much of a difference.”
At that time, Ireland was in the middle of a financial downturn and services were hard hit. Jean recalls the staff shortages, and overworked health workers with little time to support patients or bring them together.
Disengaged
“By the time I went to university, I was disengaged from my diabetes. I just didn’t want to know because I assumed I would never be able to be well with it. I would keep my blood sugars high a lot of the time to avoid low blood sugars, to appear normal and to survive. I knew this would impact me long-term, but at the time I didn’t connect that with how my blood sugars affected my quality of life day to day.”
She adds, “I would do the bare minimum in managing my diabetes to stay out of the hospital, but I didn’t really know what I was doing and never felt very well or confident with it – it was a constant source of stress in the background.”
Things changed completely
After university, Jean moved to a different city and started a new job. “Paying for private health insurance, I could access better diabetes services there, so things changed completely. I had continuity of care for the first time, I got to know my team and they got to know me. I was given a flash glucose monitor which lets you check your sugar levels on your phone or reader without pricking your finger. This was incredible. For the first time I could exercise, feel safe, and be more in control.”
Jean says, “I felt heard. The dietitian talked everything through with me: my day-to-day symptoms and my quality of life, the dehydration, the brain fog, my moods, even my relationships.”
Jean now has an insulin pump which delivers short-acting insulin every few minutes in tiny amounts. Inspired by the care she experienced, she is now in Edinburgh training to be a dietitian in Scotland’s National Health Service.
“Everything happens at the same place – appointments with the endocrinologist, nurse, dietitian, HbA1c checks, eye checks, even the support of a psychologist.”
Advice to health-care professionals
Jean’s advice to health-care professionals is simple: “The first step when they talk to people with diabetes should be to ask them how they currently feel about their diabetes, and how they would actually like to feel. This could lay the foundation of someone’s care plan. Ask if they need psychological help, and if technology is working for them. This is important because so many factors affect your blood sugar levels and the stress this causes affects how much you can care for yourself.”
Innovation
Jean also emphasizes the importance of ongoing innovation. “People use diabetes technology to live with diabetes; for people to actually live better, individual needs must be considered. One size doesn’t fit all. I find my insulin pump at times is not aggressive enough for the completely normal fluctuations in my insulin demands for different points of the month. I think the algorithms of commercial pumps need to be designed to be more sensitive to different stages of life and hormonal changes.”
Team support
Jean is now part of a pilot scheme, a team of support workers who bring their lived experience to help people with diabetes cope with day-to-day concerns and to answer queries. She thinks that such team support, consisting of people living with diabetes backed by health-care staff, should be integrated into all mainstream health systems.
“Most of us only see a health professional 3 times a year at most, but we live with our diabetes every day independently, so this peer support can make all the difference.”
In her blog, Jean describes the difference that finding an online community of people with diabetes made for her. “Finding the diabetes online community re-shifted my focus and priorities. I came into this community by accident, crying and screaming, expecting to be met with the usual negation, feeling unheard and misunderstood, to instead be met with genuine empathy, and ‘it's okay, we understand.’”
Patient education and team support, which Jean so values, are the basis of the approach outlined in the recent WHO/Europe publication “Therapeutic patient education: an introductory guide”. It aims to help policy-makers and health professionals provide effective therapeutic patient education for all patients living with chronic conditions. The goal is not only to improve decision-making about clinical care by involving the patient through education, empowerment and support, but also to help them live a more meaningful life.
Background on diabetes: what are WHO Member States committed to?
In 2022 WHO Member States first supported the creation of global targets for diabetes as part of recommendations to strengthen and monitor diabetes responses within national noncommunicable disease programmes.
WHO/Europe and the International Diabetes Federation Europe have agreed to accelerate progress to meet or exceed these global diabetes targets for 2030:
- 80% of people living with diabetes to be properly diagnosed
- 80% of them to have good control of glycaemia and their blood pressure
- 60% of people over the age of 40 with diabetes to receive statins
- 100% of people with type 1 diabetes to have access to affordable insulin and blood glucose self-monitoring.