MAN ON A MISSION

Mark Shah is 2021’s Credentialled Diabetes Educator of the Year and once you learn about his experience, his motivation and what he’s striving to achieve for young people’s futures, it’s clear the award is incredibly deserved. And he’s nowhere near done yet.

Even though Mark Shah lives with type 1 diabetes himself, it’s not the reason he wanted to become a diabetes educator. In his own words, after qualifying as a registered nurse, it just kind of ‘happened’.

“In my early years as a nurse, I worked on renal wards, looking after people with kidney problems. Some needed kidney transplants, some needed dialysis and for quite a few people I was caring for, diabetes-related complications was the reason for their kidney failure. That had a big impact on me.

I didn’t like what I was seeing and, perhaps a bit naively, I thought maybe I could do something about it. I guess I wanted to make a difference.”

A few fortuitous job opportunities and encounters with supportive colleagues later, and before long Mark was embarking on further study to become a credentialled diabetes educator, or CDE, a qualification he earned in 2003. Three years later, he’d also studied successfully to become a nurse practitioner, specialising in the care and management of diabetes.

Today, Mark is a member of the clinical team at Perth Children’s Hospital’s Endocrinology and Diabetes Service. Looking after children with all types of diabetes, he specialises in youth-onset type 2. “When I first arrived at the hospital, it was a very niche role. Type 2 is still far more common in adults, but the lowering of the age of onset has occurred steadily, and now we’re seeing it in children under 10 years old. These kids are very vulnerable with their risk of type 2 primarily from their family history of type 2 diabetes and their metabolic profile. Unfortunately many have a very high risk of experiencing complications at a young age, so it’s a challenging area.”

Researching the way to better care

The Endocrinology and Diabetes Service at the Perth Children’s Hospital is linked to a research department, which means many of the service’s doctors, nurses, dietitians and other allied health professionals are actively involved in research projects. Mark is one of them. “When you do research in an area where the understanding isn’t as good as it could be, you can genuinely improve care by providing evidence of different interventions or treatment.”

Recently, that meant embarking on a trial to investigate the benefits of continuous glucose monitoring for children living with type 2.

“And we found a dramatic improvement – they responded really well to the technology. It’s life

changing because not only can it reduce the amount of finger pricks they have to do, their understanding of their glucose levels, and what impacts them, grows considerably, too. The trouble is, currently there isn’t equity around the access for children living with type 2, compared to those living with type 1, to technology like this, so we’re using our research to try and advocate for that change to occur.”

Mark is also involved in research designed to understand the mental health implications of a diabetes diagnosis for young children, particularly against the background of a family history of the disease, and another project that’s putting food security under the microscope. “Those type of studies involve doing interviews with children and families, as opposed to trialling a drug or piece of technology. It’s a really nice way of doing research.”

Learning the language

Mark is passionate about helping children and families feel confident to self-manage diabetes. “A lot of diabetes care is about the words you use. Building trust is really important but certainly as an educator, you never want to tell someone what to do. You want to be the person that helps someone genuinely understand what to do. That’s partly because you want kids to know how to live with diabetes, but also so they know they can live with diabetes. It’s important for them to know they can still do everything in life that they want to, without being dependent on other people.”

He’s also passionate about trying to alleviate feelings of guilt. “With type 1, there’s no blame and it’s no one’s fault, but with type 2 quite often the perception is it’s the reverse, so that people may be carrying some guilt. One of the first things I do when I see a child who’s been diagnosed with type 2, and their family, is address that issue straight away, saying this is not your fault, explaining what the condition is and reassuring them we can work together to improve it.

“My own diabetes isn’t something I talk about with the children and the families I see, unless it comes up if they notice the tube from my insulin pump, because it’s about them not me.

But living with it myself, I guess I am able to relate to them in a different way.

“I was genuinely surprised and quite shocked when they announced my name as the CDE of the Year. Having won the Western Australia CDE of the Year 2021, I certainly wasn’t expecting to win the national award. Every single one of the state winners was equally as worthy, so it was really humbling. But I’m honoured.” ■