Chapter 3: Opportunities for change

3.1 Opportunities for change 3.2 Understanding perspectives

3.1 Opportunities for change

What are the barriers for young people accessing mental health care?

1. There is a fragmentation of mental health services across a wide number of government and nongovernment services, both state-wide and national. They are not unified, and vary in the level of care and support they provide. Young people with emerging mental health concerns may not have accurate diagnoses and do not know which service can support them. 2. There is a high level of stigma associated with mental illness, amongst young people as well as parents and carers. They may feel that problems associated with growing up are just a phase and hesitate to seek help early. 3. There is a lack of in-person services that provide tailored information and face-to-face interaction. Online and telephone services can help in times of crisis, but fail to deliver on-going interaction required to build trust between young people and those who can help them. 4. Adolescents and young adults mature at various rates, but there is a lack of specific services to support transition from child to adult care. Adult mental health services may not take into account the needs of young people transitioning into adulthood. This includes continuing education, maintaining support from carers, or establishing independent living. Adolescence is a period in which mental health disorders can be compounded by the experiences of growing up, engaging in risk-taking behaviours, growing distrust for adults, peer pressure, and social media.

How can we remove these barriers and improve youth mental health services?

1. The Hub Model

Create a unified hub of services which acts as a Centre of

Excellence for youth mental health care. The opportunity to collocate a wide range of support options encourages collaboration and integrated care delivery, as well as improving transitions between services.

2. Community Integration

Normalise mental health care through community engagement, boosting awareness amongst young people, parents, teachers and others. Use architecture as an opportunity for integration and positive community activities, avoiding the stigma arising from being hidden away. 3. Ease of Access

Provide visible walk-in services tailored to young people, with or without their parents or carers. A space which is youth-centric and safe can be a first point of reference for information.

4. Designed Environments

Support trauma-informed care through design, working with service providers to create tailored environments that can be adapted to a wide range of needs.

5. Early Intervention

Focus on prevention and early intervention by supporting recreation, exercise, and meaningful engagement with community and nature. Bring supportive functions into mental health care environments, such as sport, outdoor activity, music, and art.

“Co-design is important in mental health services because it challenges the status quo, addresses wellknown power imbalances that exist across many levels, and ensures the voice of people with lived experience is a co-driver of change, innovation, and leadership. The evidence shows that using co-design creates safer, higher quality and more efficient care.”

A Guide to Build Co-design Capability - Consumers and staff coming together to improve healthcare

© Agency for Clinical Innovation 2019

3.2 Understanding perspectives

As a further exploration into the key findings, this chapter presents three journeys that represent the potential stakeholders involved in accessing adolescent and young adult mental health services. Using the ACI co-design handbook as a framework, the journeys mapped are a process of co-design that places emphasis on the consumer and their experience in accessing mental health services. Journey maps aim to personify a consumer’s behaviour, feelings, thoughts, and attitudes at each stage of their experience.

This experience-based co-design is a collaborative approach that brings consumers, families, and staff together to improve existing health services. Co-design is particularly useful in a trauma-informed context as it recognises the value of the consumer in identifying their needs.

Personas, such as those of Simon, Lydia and Lydia’s parents, are a useful tool in highlighting the deeper issues and unmet needs in the context of the current mental health environment. They can be developed on the basis of a real quote, supported by research and demographic statistics to provide deeper insights into the real issues faced by young people when seeking help. A range of potential user groups have been explored through our research to identify opportunities for improvement in service design.

These experiences reflect those of a significant proportion of young people for whom mental illness has serious impacts on educational outcomes and transition into adulthood. Their journeys demonstrate that the right environment for accessing mental health support may be critical to early intervention and reduce the strain of long-term mental illness on themselves and their families.

Simon

Simon Age: 14 Gender: Male “I tried really hard to get some help, but I soon found that there weren’t many options or places to go in the town where I was living. It was like there was nowhere to turn.”

Simon is 14 years old and the eldest child in a single parent family. He has no clinical diagnosis but is experiencing violent outbursts of aggressive behaviours. As a member of the indigenous community, he feels like he can’t ask for help, and is scared of being pushed away from his community.

Simon helps his single mother get his younger siblings ready for school. He walks them to the primary school on his way to high school. He arrives late to school and is told off by his teacher. He feels singled out and has a violent outburst in the middle of class. His teacher sends him to the principal, who sends him to the school counsellor. He tells the counsellor not to bother telling his mum, who wouldn’t even care as she is too busy. The counsellor refers him to some online services that he can look at in his own time. At home, his mum is too busy tending to his younger siblings, so Simon goes to play in the local park with his friends. Later that night, he looks up some of the services his counsellor told him about and found a service that he may be able to visit. After school, he takes the bus to the community health centre. He doesn’t tell anyone that he’s there. He speaks to staff and they refer him to some services that may be useful and ask for a Medicare card. Simon, who is under 15, does not

Simon’s Emotional Journey Helping Mum and siblings get ready for school Late to class, getting in an argument with the teacher In trouble for a violent outburst. School counseller provides Simon some resources

My Mum relies on me

I have to take care of my little brother

I feel tired and stressed It’s not my fault I’m late

The teacher is always picking on me

This is unfair! I’m too angry to talk about it right now

Burden of disease analyses show that for Indigenous people aged 10–24 the leading contributors to the disease burden were suicide and self-inflicted injuries (13%), anxiety disorders (8%) and alcohol use disorders (7%). Most of the deaths of young Indigenous people are due to potentially avoidable conditions if given timely and effective health care. It is therefore important that services are available and accessible to Indigenous youth that facilitate health and happiness and provide support in times of need.

have access to a Medicare card. Without a Medicare card, Simon is unable to access the support that he needs, and his violent behaviours continue. Without a clinical diagnosis, his aggression is misunderstood, and he turns to risktaking behaviours and becomes less engaged with school.

What if there was better intervention that was able to support Simon? How could a different referral pathway improve his experience?

Simon sits down with his school counsellor after his violent outburst in class. The counsellor refers him directly to an eMerge centre that is easily accessible to adolescents such as him. Simon visits the centre after school. He finds it welcoming and easy to navigate, and is referred to some services that are free and scheduled outside of school hours. He visits the centre in his own time to access the services he has been referred to. In his sessions, after speaking about his ambitions to work, the team at eMerge help to direct him towards relevant vocational studies. Outside of his appointments, he plays basketball at the centre with some friends.

Australian Institute of Health and Welfare (2018). Aboriginal and Torres Strait Islander adolescent and youth health and wellbeing 2018. Cat. no. IHW 202. Canberra: AIHW.

Counseller refers Simon to eMerge service

I’ll check it out after school eMerge staff provide free services after school hours

This doesn’t seem so bad

They have a skate park and sports facilities

Mum is too busy to talk in the evening. Simon looks up services online

Maybe I can find help online Attempting to access health services

I’m hopeful but nervous

They say I need a medicare card and a referral Simon accesses regular support and counselling

They’re understand what I’m going through

I can focus on school now

An accessible, walk-in centre is enough to positively impact Simon’s experiences in seeking mental health services and turn his life around.

Alone and unsupported, behavioural issues continue

The world is unfair, it makes me angry

I need to be tough and take care of myself

Lydia

Lydia Age: 16 Gender: Female “I told some of my friends that I was feeling low and they told the counsellor at school, so I started getting some counselling which kind of helped. But I still felt depressed and after a while my friends felt like I was too much for them and they stopped hanging out with me. Then things really went downhill for me.”

Lydia is a high school student studying full-time. She feels pressure from school to perform well in her upcoming HSC and has been speaking to her school counsellor for help. Outside of school, she has no support and feels overwhelmed by suicidal thoughts and self-harming behaviours. Lydia has been feeling especially lonely after feeling rejected from her friends at school. She is already overwhelmed with the thought of completing her HSC. During lunch, she goes to speak with her school counsellor. She’s able to talk about some of her worries until the lunch bell goes off and she has to go back to class. At home, she tries to focus on her studies but is too overwhelmed by depressive and suicidal thoughts. Alone, she has no one to turn to for help. When her parents come home, they discover she has self-harmed. They want to take her to the emergency department, but Lydia is afraid and refuses to go. They call hotlines, looking for urgent care, but keep getting directed elsewhere. The next day, they visit the family GP. The GP is able to refer her to a child psychologist but, when they try to set up an appointment, they find there is a two-month waiting list. Lydia waits

Lydia’s Emotional Journey Alone at school, rejection from friends Talking to school counsellor Studying at home Experiencing depressive and sucicidal thoughts

They’re still ignoring me

I hate it here I just need someone to talk to

There’s never enough time to explain how I’m feeling Why can’t I focus? I’m going to be a failure

Amongst female students in Years 11-12, 16% have self-harmed in the last 12 months, and 14% have a diagnosed mental disorder, with the most prevalent being anxiety disorders and major depressive disorders. 1 in 13 students aged 12-17 years have seriously considered suicide, and one-third of those had attempted suicide.

two months for her appointment with the psychologist. During this time, her depressive and self-harming behaviours have escalated. Even after being able to access counselling, she feels no improvement and that her needs are unmet. Her educational outcomes suffer and she is unable to complete her HSC on time.

What if there was a better intervention that was able to support Lydia? How could a youth-specific emergency service support her needs?

Lydia’s parents come home to discover that she has engaged in self-harming behaviours. They call a hotline that immediately direct them to eMerge, an accessible, urgent care centre dedicated to adolescent mental health. She is admitted into the inpatient unit and receives the care that she needs. The team there is also able to make sure she doesn’t fall behind at school. After three weeks, she is discharged from eMerge and returns every week to receive further treatment to support her transition out of inpatient care. She is able to access services when she needs to and is able to re-integrate into school.

Goodsell B, Lawrence D, Ainley J, Sawyer M, Zubrick SR, Maratos J (2017) Child and Adolescent Mental health and educational outcomes. An analysis of educational outcomes from Young Minds Matter: the second Australian Child and Adolescent Survey of Mental Health and Wellbeing. Perth: Graduate School of Education, The University of Western Australia.

An emergency hotline directs Lydia to an eMerge centre

A 24hr service that’s safe for adolescents?

Lydia’s parents discover she has self harmed

I’m scared and don’t know what to do eMerge team support Lydia’s recovery

I’m getting active treatment

My recovery will take time Discharged and returning to school

I’m feeling recharged

I still have my ups and downs, but I know where to get help now

Having a point of urgent care dedicated to mental health problems in young people was essential in intervening in Lydia’s journey and giving her the support that she needs.

GP provides advice and referral to psychologist Without support, Lydia’s health deteriorates

They’re going to help us

There’s a two-month waiting list for an appointment I have no energy or motivation

What’s the point of studying

Kevin and Phuong, Lydia’s parents

Kevin Age: 48 Gender: Male

Phuong Age: 46 Gender: Female “School must be difficult right now - the HSC is tough. I’m sure if she needed us, she would ask...let’s give her some space and let her figure it out.”

Kevin and Phuong are Lydia’s parents. Both work full-time. Lydia is their only child. They remember being stressed at Lydia’s age, but they got through it somehow and are fine now.

They both know that Lydia is worried about school and have noticed she is spending a lot of time alone in her room. Phuong has tried to talk to Lydia but Lydia has brushed her off and sometimes they have had fights. She and Kevin are trying to keep the peace, thinking that at least a calm home life might help Lydia deal with whatever is worrying her. But they want her to do her best and try to keep her focused on her future. Kevin has been talking to his friends about it and they say their kids are struggling too, but he thinks Lydia seems worse than the stories they have been telling him. When they get home from work, they find Lydia crying and are devastated to see she has harmed herself. She won’t go to the hospital and Phuong calls her mother to see if she has any ideas. Phuong and Kevin call some emergency hotlines, but keep getting sent to other places. They decide to start with the family doctor and see if they can get a referral to a psychologist. The GP is good, but the specialist has a long waiting list and they can’t get in for

Her parents’ Emotional Journey Trying to stay connected to Lydia

She spends all her time on her phone

Kids can be real arseholes I’m sure if she needed us we would know

Let’s give her some space Maybe it’s just a phase

She’s too young for these problems

Feeling shut out by Lydia

They find out she self-harmed, but don’t know what to do

Over a quarter (26.8%) of all parents and carers reported that their child or adolescent had some need for help for emotional or behavioural problems. For those who didn’t seek help for their children, the most commonly identified reason was not being sure where to get help (39.6%).

two months. Lydia sees the psychologist, but it’s only a temporary fix - she is getting worse and worse, and Phuong and Kevin worry about leaving her alone at home in the afternoons. The school isn’t much help and they don’t want to get into details with their friends. Phuong and Kevin can’t find help and can’t focus on their jobs while they are so worried about their daughter. Phuong takes time off work, but it’s not enough - on the end Lydia can’t complete her HSC. She still can’t talk to them about what’s going on, and Kevin and Phuong fight constantly about what to do. They don’t know how she will ever be able to live independently.

What if there was a better intervention that was able to support Kevin and Phuong? How could a youth-specific emergency service support the family’s needs?

When Kevin and Phuong first find that Lydia has self-harmed, they call a hotline that directs them to eMerge, an accessible, urgent care centre dedicated to adolescent mental health. Lydia goes into temporary care and they visit regularly. With Lydia’s ok, they are given updates on her progress and are glad to see that she is keeping up with her schoolwork. eMerge’s transition services are offered to Kevin and Phuong, so that they know how to talk to Lydia during her transition out of care, and how to help her in the future.

Lawrence D, Johnson S, Hafekost J, Boterhoven De Haan K, Sawyer M, Ainley J, Zubrick SR (2015) The Mental Health of Children and Adolescents. Report on the second Australian Child and Adolescent Survey of Mental Health and Wellbeing. Department of Health, Canberra.

An emergency hotline directs Kevin and Phuong to eMerge

We can get help for her straight away

We can visit her - she’s not locked up

We can’t make her do anything There must be something we can do, but I don’t know what it is

I can’t work while I’m so worried about her

eMerge keep Kevin and Phuong informed

Lydia has care and help - more than we could give

The facilities and staff seem really understanding

Kevin and Phuong try to get help but Lydia is reluctant Nothing seems to be working and Lydia is not getting better Ongoing support after discharge

I’m so glad we know where to go now

We are relieved that she can keep planning for her future

Lydia’s health and their marriage deteriorate Accessible, informed care dedicated to youth mental health provided the support that Kevin, Phuong and Lydia needed, both in time of crisis and on an ongoing basis.

We are always fighting about what to do

We are trying not to make things worse, but it’s really hard