Transitioning into the adult health system is a big step for young people with type 1 diabetes, but there are ways to support them through the process, ZOE DELEUIL writes. 

Between high school, social life, work and relationships, teenagers and young adults are at an intense stage of life. Amid all the changes that accompany adolescence, teens with type 1 diabetes will also leave the children’s hospitals behind for adult clinical services. Leaving a familiar setting is only part of it – older teenagers and young adults are also expected to move towards self-management with fewer appointments and tracking. 

As someone who lives with type 1 diabetes, Perth endocrinologist Michael Hancock has a special interest in this transitional stage. He says that as soon as children move to adult services at their local hospital, it’s a different healthcare experience with more patient responsibility. 

“In Western Australia, all children living with type 1 diabetes are managed through Perth Children’s Hospital (PCH), though metropolitan or regional and rural outreach clinics,” Michael says. 

“It’s a large and well-structured department, where patients receive significant support.” 

For patients with type 1 diabetes, there is a dedicated adolescent service from ages 14-18, with patient reviews at least four times a year. PCH dedicates time towards preparing teens for transition, with targeted teaching sessions and activities regarding life in early adulthood. Allied health teams, including diabetes educators and social workers, provide additional support to patients and their families if there are concerns around attendance or health outcomes.  

Diabetes educator Tara Stevens says adolescent clinics are an important step in helping young people take on more responsibility around managing their diabetes. 

“At the adolescent clinic they will be given more information around topics such as alcohol, sick days and driving. They come in with their parents but have the option to see the endo on their own,” Tara says.  

This newfound independence mirrors other changes as teens enter young adulthood. Most will have gone from having a structured life with school, friends and family to a new reality where they may be juggling work, developing careers, new friends and relationships. Managing diabetes solo, on top of everything else can feel overwhelming.   

Research shows that people living with type 1 diabetes make an extra 180 decisions every day. For young adults, these decisions must now be made in new environments with people (bosses, co-workers, friends, partners) who may have varying levels of knowledge, understanding and ability to support.  

People living with diabetes understand that possible errors with insulin dosing, due to common factors such as exercise, food or stress, can lead to sometimes dangerous blood glucose changes that must be addressed promptly. This may make the diagnosis of diabetes more visible to others, which is a common source of worry for some at this age.    

“For an 18-year-old in a new workplace, with new friends, to be told ‘it’s all up to you now’ can be a lot to manage,” Michael says. “With Type 1 you can make one wrong decision and in ten minutes that decision creates havoc.” 

He acknowledges that self-management is a necessary step towards independence for people living with diabetes, but what is most important is that they are well supported. 

“At the end of the day you do have to prepare to be an adult, and it’s not like the hospital doesn’t prepare people – the current public system is doing the best with what we’ve got, but we are always looking for ways to improve it.” 

The question for many working in this space is whether to build upon what already exists in each public hospital, or to introduce a structured young adult service for all patients aged 18-25 years, involving combined care between paediatric and adult services. This is an ongoing conversation, requiring consideration of issues such as funding and the current service delivery model of each hospital. How the transition is managed also depends on the patient, with some needing more scaffolding than others. This is where parents, who know their child best, are so important.  

This is a view shared by Maria Davey, a PhD student currently researching parents supporting teens with Type 1 diabetes. Research in this area has usually grouped children and adolescents together, without considering the specific needs and challenges of parents of adolescents.  

“We know that adolescents strive for greater autonomy and often resist parental involvement, perceiving their parents as being overprotective. However, the research shows that continued supportive parental involvement is linked to enhanced diabetes self-management and self-efficacy,” says Maria. 

Add in varied access to healthcare, cultural barriers, family dynamics and the fact that each and every person has a different experience, and it’s easy to understand why this can be a particularly stressful time for families. For those living in regional and rural areas, these challenges are compounded by limited access to diabetes educators within their own communities. The long waiting times of the public system can often drive those who can afford it to private health, creating another barrier to equitable care. 

Tara Stevens emphasises that parents should not feel that they must step back completely. “One thing we need people to know is that you are never going to get in trouble from your diabetes educator when you come into the clinic. Sometimes you need to adjust your medication. Sometimes you need to relearn a few skills or change your insulin ratios to make sure they are working for you. Managing diabetes – at any age – is a team effort.” 

For Michael, navigating these challenges with his patients is one of the most rewarding parts of his job. Having known from a young age that he wanted to work in science, he studied pharmacy and enjoyed the patient interaction so much he went into medicine.  

“I find that my passion for this area always translates and moves through to my patients, and I find it very easy to help people with all forms of diabetes. I was diagnosed at the age of 17, and I’m proud to let my patients and their families know this. I’m an example of someone living a normal life and achieving goals with diabetes. It can be done – we simply need to approach daily life in a slightly different way.” 

Tips for successfully transitioning to adult diabetes services in West Australia

• Understand your options in both the public and private system and what will work best for you.  

• Keep track of your appointments, set reminders on your phone, and always ring up to reschedule if you can’t make it to avoid dropping off the system. 

• Stay on top of your prescriptions and other consumables.  

• Involve your family and friends ask for help when you need it.  

• Let your friends know how they can help when you’re out with them, if necessary. Read our interview with Braydon Scott and his tips for going out.