While volunteering at a crisis text line service, I once conversed with a young woman who was caring for a sibling who experienced persistent psychotic episodes following a vehicle accident. She was incredibly frustrated. Her sibling had been hospitalized several times, but following each discharge, the woman couldn’t get support for her sibling. She had exhausted all of the local mental health services and was frustrated by lengthy wait times and the lack of options. The situation felt hopeless.
Unfortunately, many similar stories exist about patients and their families being stranded after being discharged from hospital psychiatric care. The precarious act of accessing services and managing illness, school, employment, relationships, and housing deteriorates, prompting rehospitalization. You can imagine how frustrating it is to make some progress, only to tumble down like a beetle pushing a sand ball up a hill.
Though these experiences do not apply to every individual, this slippery slope of rehospitalization is precarious for individuals with severe mental illness. This term is most often applied to, but is not exclusive of, schizophrenia, treatment-resistant or severe depression, bipolar disorder, borderline personality disorder, and obsessive-compulsive disorder (OCD). Severe mental illness results in serious functional impairment that interferes with one or more major life activities such as employment. To add to the challenge, many of these illnesses emerge in late adolescence or early adulthood; some disorders, like schizophrenia, may become progressively worse for the patient if left untreated.
Early Psychosis Intervention
Early psychosis intervention programs, such as the ones available through the Canadian Mental Health Association, are specialist units dedicated to supporting adolescents and young adults experiencing significant mental health issues with psychosis. Interprofessional teams often include psychiatrists, nurses, social workers, pharmacists, recreation therapists, program assistants, and occupational therapists to support individuals and families. Programs may be in-patient or delivered through community settings, at patient’s homes, or clinic offices. Some of the primary aims of these programs include reducing disruption of work, school, and relationships, improving social skills, reducing the burden on family, and reducing cyclical psychiatric hospitalizations.
What is it about severe mental illness and psychosis that makes moving up the slippery hill so challenging? A mix of different situational and health factors contributes, but specifically, the lack of integrated healthcare services and patients’ complex health needs is a challenge. For example, a Canadian study examining hospital records of 15-19-year-olds found that lack of aftercare in the month following psychiatric discharge increased the risk of hospital readmission. A 2017 study examining 90-day post-discharge hospital readmission for 15,628 patients ages 5-24, found prior use of services, more extended hospital stays and comorbid mental health conditions to be risk factors for readmission. In the same study, post-discharge aftercare services reduced the risk of readmission by 32%. Simply put, there is a need for a system to provide care for individuals with complex support needs following hospital discharge.
When individuals can’t connect with support, they fall through the gaps. Early intervention programming in this cycle may be a solution to support individuals living with serious mental illness. Intervention programs could prevent stress and reduce the likelihood of problems with work, family, school, and substance use. Interestingly, the positive strengths of early intervention and community-based programming are already well-established for the treatment of psychosis and schizophrenia. Patients meet regularly with a multi-disciplinary team of health care providers to receive treatment monitoring, training to improve life skills, and other beneficial services such as counselling. A 2020 systematic review provides evidence that access to specialized early intervention services leads to higher patient satisfaction, lengthier adherence to treatment regimens, and improved long-term functioning.
Other forms of Early Intervention support
So, we know that early intervention programs can be an incredible resource for psychosis and schizophrenia. What about other severe mental illnesses, such as OCD or treatment-resistant depression? The landscape is uneven. Early intervention programming is beneficial for many disorders, but differences in service delivery for separate disorders are still being researched and developed. For example, researchers propose that early intervention programs for OCD may differ significantly in treatment protocol from psychosis programs even though there are similarities in the timing of symptom presentation in individuals.
Still, access to community mental health and other forms of intervention services can offer immense support for patients and families. Nevertheless, persistent challenges include long wait times and limited options for rural communities.
Connecting with a mental health professional such as community psychiatrists, social workers or child psychologists can provide insight into long-term management and support services. Adolescents and young adults may access online counselling and cognitive behavioural therapy through the Ontario Structured Psychotherapy program and the BounceBack program. Services such as group homes, which are live-in programs that provide psychiatric treatment and life-skill development, are a resource from which adolescents and young adults benefit as they develop life skills.
Returning to the beetle working its way up the hill, one might imagine that service access is a resting point early in the beetle’s journey. The question is, how do we make these rest spots easier to get to?
Barriers to seeking available support services
Some barriers to service access may be specific to the illness, but we can draw broader conclusions from our understanding of identified hurdles. A 2023 review and narrative study of barriers and facilitators to early intervention access for psychosis and serious mental illness found three overall themes centred around knowledge, stigma, and relationships. Though non-exhaustive, these themes contextualize how access to early intervention could be assisted or hindered. Knowledge, described as information known to patients and their professional and personal support system, substantially impacted whether individuals could access early intervention. Misattributing symptoms or poor knowledge of treatment options were barriers to seeking treatment. Conversely, accurate information, such as those provided by public health campaigns, prompted service access.
The same 2023 study found patients’ stigmatized beliefs about mental illness, fear of other’s responses, specific concerns about being returned to the hospital, and sociocultural factors contributed to reduced seeking of early intervention services. The last descriptive theme highlights the impact of patient relationships on accessing early intervention services. Whether a patient has support from family members, friends, and healthcare providers is a predictor of whether patients access services, particularly considering the age of onset for many severe mental illnesses.
Canadian solutions are progressing
Initially, these details are discouraging, but we are beginning to understand the importance of early intervention and how we might connect patients and services.
In Canada, solutions are being generated. Programs that offer services at primary and community care levels have been shown to improve access to early intervention and overall mental health services. Up to 80% of Canadians already rely on their family doctor for mental health needs, and primary care can provide treatment to most patients. Only 1.5% of the population with a mental health disorder requires access to specialty care. Incorporating primary care practitioners and allied health training (whose services may not be covered by public healthcare) in insurance plans can dramatically increase avenues to deliver early intervention, accelerating patient access.
These possibilities are hopeful. About 38% of Canadians with a mental health concern or substance use disorder reported that their symptoms started before the age of 15. As many mental health disorders begin in adolescence, early interventions delivered through primary and community care can improve the burden of disease and public costs. Ontario, for example, has created a Centre of Excellence for Child and Youth Mental Health program that, in part, improves pathways between primary care and community mental health supports for children and youth, ensuring earlier intervention. Since 2018, the Centre has worked with partners in 7 locations across Ontario to implement care pathways.
Recommendations for action include creating advisory groups to enhance communication among different providers across various care settings. The organization has also integrated a new standardized data tool into the care pathways, which will aid in data collection on patient outcomes, wait times, and ease of access for further research and improvement of current programming. Virtual technologies have increased access and may become an ever-present feature of mental health services. Though fully bridging the gaps that patients fall through may take restructuring and a reimagination of how mental health services are connected across hospitals and community service providers, the beginnings of a better pathway for patients living with severe mental health disorders is on the horizon.
Creating a Rest Stop
Occasionally, I think back to the young woman I spoke to on the crisis line who was trying to navigate the mental health care system to get support for her sister. I remember her hope of finally getting some relief and long-term care for her sibling. Did she ever find support? I will never know, but there is growing hope that her chances will improve as healthcare workers and provincial programs continue introducing early intervention programming and community support services.
One such service in Ontario will be Eli’s Place, which will be a farm-based residential treatment centre helping young adults who have been diagnosed with severe mental illness. Patients will receive ongoing support, gain life skills, and get transitional support for independent living. Many patients may come to Eli’s Place after being shuffled through hospital systems and with complicated family and peer relationships caused by their illnesses. While the hurdles that each patient and family encounters cannot be fully anticipated, there is hope for a rest stop for everyone who needs such support along the way.
Eli’s Place will be a rural, residential treatment program for young adults with serious mental illness. To learn more about our mission and our proven-effective model click here.
