Despite the power and efficacy of modern health care, safeguarding the lives of young people has perhaps never been more complex. The prevalence of mental illness and historically high rates of youth suicide present great challenges in Australia. So why not ask young people for their solutions? The result at the recent Youth Health Forum was a blast of ideas.
The emergence in recent decades of mental health as a deep concern for many young people has highlighted another issue – the “missing middle” in the health system. That is the lack of youth-specific services and affordable care in a system that is difficult to navigate for young people moving from child-centred to adult services.
The missing middle was a key theme at the highly successful Youth Health Forum the Consumers Health Forum hosted in Canberra recently
The 50 young people who gathered from around Australia brought energy and fresh thinking to the topic of what’s needed to make healthcare more effective for young Australians.
Their discussions culminated in a number of ‘Big Ideas’ concerning education standards, the importance of lived experience participation in mental health, smooth, patient-centred transitions from childhood to adult services and compulsory mental health services for emergency services.
(See the Youth Forum’s call for action in the document, Our Vision for the Future.)
As this edition of Health Voices conveys, it is not unusual for young people to experience profound and intimidating health challenges. Yet so many have come through their experience of pain and uncertainty to emerge with fresh thinking about how to improve the services for those who follow them.
The Inaugural Youth Health Forum of young people aged between 16 and 30 was organised not only for them to discuss and develop a better understanding of the health and social system but also to provide an opportunity to work with CHF to advocate for a better health system.
Research has consistently demonstrated the benefits of health policy that results from a deliberate collaboration with people affected by its implementation. But as Paige Burton asks: “So why are young people still being left behind?”
Paige writes that for our system to more effectively engage young Australians, we need a concerted effort to include them. “We must develop broader and more inclusive narratives about our healthcare system. Young people need to be able to picture themselves in a health environment that makes them feel included, respected, and supported.”
As CHF so often sees, consumers sharing their experiences and working together, are more likely to reach a better health outcome for themselves and others. For young people, finding others to join them on the journey can be transformative, as Rebecca Langman found.
Rebecca took a full year to seek psychological help from a GP, as her illness spiralled out of control. She says if she had been able to interact with a peer worker, a person with a lived experience of mental illness, “I believe they would have inspired a sense of hope and encouraged my recovery at a moment in time that I felt hopeless and doomed”. The presence of a lived experience workforce is vital in not only mental health services but in any area of health care where it can be facilitated, says Rebecca.
Another challenge for young patients is learning how the health system works. Amy Mills, who has lived with Cystic Fibrosis since infancy, says one of the biggest challenges facing young people is the transition from paediatrics to the adult healthcare system. Courses should be taught on how to successfully navigate this, she says. “Paediatric care is patient-focused. Complex medical cases such as mine are discussed across all the various medical teams. However, when you walk through the doors to the adult hospital, it’s like a battle royale. Health professionals do not communicate with each other and you’re expected to navigate this new terrain with no assistance. It is important to remember how people can feel isolated when leaving behind everything that is familiar and safe. Hospital clinics should create transition pathways that open up dialogue between the two healthcare systems, ensuring that young adults continue to feel supported throughout their care.”
And youth power can work, as Allan Ball writes. In Adelaide, a safety and quality audit gives power to the child and young person to have an individual and collective say about their first impressions of the health service environment and what could be done to improve overall quality of space. They have coordinated eight audits in three years, leading to refurbishments of the neurology clinic, hospital school, café and hospital foyer.
Ash Polzin implores clinicians, carers, and politicians to listen carefully and critically to young people with mental health issues have to say. “Unfortunately, what clinicians don’t see (and sometimes don’t want to see) is the fact that I haven’t had a good night’s sleep in years; I have frequent emotional flashbacks, which from the outside look like I’m just lost in my own thoughts; that it’s taken me two months to book an appointment with my psychiatrist because picking up the phone stresses me out so much.”
Chido Mwaturura is researching aspects of care for people of African migrant background and says that addressing mental health in Culturally and Linguistically Diverse youth requires multiple interventions at different levels. “It will be interesting to see how utilising technology via online services and mobile applications – which are already widely in use – can be tailored to provide support and improve access for CALD youth.”
As Rasa Islam puts it, multicultural young people need an environment that fosters a strong sense of ethnic identity and positive sense of self, where they can form strong social support networks free of racism and discrimination.
Diya Mehta, an articulate 16-year-old, says there are valid concerns that so many of the young people including herself aren’t well-informed about health services, and aren’t sure how to best access them. Now, she says hopefully with the advent of the Centre of Research Excellence in Adolescent Health, this will change.
Aside from the fact that youth and adult mental illnesses are often quite distinct, there are many youth-specific barriers that impede their access to mental health services, writes Michael Wei. He says that in addressing youth mental health, consumer participation is pivotal. “Most young people are quite inexperienced with navigating the healthcare system and may have reservations tapping into mental health services alone. Such reservations may be further complicated by concerns about confidentiality, trivialisation of their own condition, feelings of embarrassment around the stigma of mental health and unclear expectations on what these services can offer.”
Yet another dimension of the youth health experience is that of young people shouldering the care of others. Ara Cresswell writes of the remarkable lives lived by young carers in their teens and younger, looking after incapacitated parents. “By educating non-carers on the caring role and the efforts and achievements of those who may be in their midst, we aim not just to raise awareness of young carers, but also to promote their responsibilities and efforts as something to be celebrated and not hidden.”
Leonie Sanderson describes two youth health projects in Queensland with a common approach – putting the views and voices of young people and their families at the heart of the work. “This is no simple feat, but it’s something that is vital and critical to developing successful and effective services. It is also key to changing the culture to one where the idea of developing any service without consumers and carers involved would be considered preposterous.”
Mission Australia also highlighted the importance of nurturing strong family relationships to ensure young people are protected from being pushed into homelessness in the Youth Mental Health and Homelessness Report . Joann Fildes says of that report: “Young people who reported a probable serious mental illness as well as poor family functioning were far more likely to spend time away from home than those young people who had a probable serious mental illness but had positive family relationships.”
From left field, so to speak, we have professional baseballer, Mitch Edwards, who has observed how alcohol can ruin young sporting careers. “Alcohol is essentially the reverse of everything sports should represent. But If you watch the ads during sport, you’d think that drinking alcohol makes you a better and more successful player, but I can tell you it’s absolutely not true. I know some of the best players from my junior days are no longer playing baseball at all now. Some chose to do other things, and that’s fine. But I know some others just got caught up with partying and drinking too much.”
Michelle Lim describes an innovative trial she is leading at Swinburne University of Technology, in collaboration with its health partner Medibank, aimed at equipping students with coping strategies to improve their mental resilience. “We are hoping to see that students who participate in the program show lower levels of anxiety and stress, as well as increased psychological wellbeing.”