Falling Through the Cracks: Diagnostic and Eligibility Gate-Keeping to Accessing Quality Mental Health Care
By Sarah McIlwaine
Schizophrenia spectrum disorders (henceforth referred to as psychosis) are debilitating conditions that typically onset in adolescence or young adulthood. While the incidence of psychosis is relatively low (in 2016, the global age-standardized point prevalence was 0.28%), the associated need for care is high. The characteristic symptoms of psychosis - hallucinations, delusions, and disorganized thoughts and behaviours - result in many people with psychosis having substantial difficulties in their social and occupational lives, a lower quality of life, and high rates of suicide. A systematic review found that the average years of potential life lost in patients with psychosis is 14.6, and the average life expectancy among patients with psychosis is 64.7 years.
In the last two decades, treatment for psychotic disorders has shifted from medications, which have a high burden of side effects and inpatient hospitalizations, to more recovery-oriented approaches, such as newer and more tolerable antipsychotic medications and psychotherapy (e.g., cognitive behavioural therapy). Attention towards early identification and prevention of psychotic disorders has also increased. In the 90’s, early intervention programs for psychosis were developed for young people experiencing an episode of psychosis for the first time (see Birchwood & Jackson, Nolin et. al, and Malla & Joober). People admitted to these programs can access a range of coordinated mental health care interventions, including regular meetings with an experienced psychiatrist, assertive case management, and in some services, access to psychotherapy, occupational therapy, and nutritional services over a period of two years (see Iyer et. al, Malla et. al, and Malla & Norman). Compared to usual treatment approaches for psychotic disorders, early intervention programs yield better outcomes, including a higher chance of symptom remission, better social and occupational functioning, and reductions in relapses and hospitalizations. A study of early intervention programs in the UK highlighted that the service promoted a sense of recovery, hope about the future, trust, and good communication. This contrasts the, discrimination, stigmatization, paternalism, and lack of shared decision-making reported by patients with severe mental illness receiving community mental health care. When medications were the only treatment offered in a standard care setting, communication with the treating clinician was reported as “meaningless”, “one-sided”, and of short duration.
Given the evidence, early intervention programs are considered the gold standard treatment for psychotic disorders, offering an eclectic selection of mental health interventions and a recovery-oriented treatment approach. However, like the rest of specialized healthcare, accessing early intervention programs requires that patients meet a particular set of eligibility criteria. For example, to access an early intervention program in Montréal, patients must: (1) be between 14-35 years old, (2) have a diagnosis of affective or non-affective psychosis that is not due to an organic brain disorder (e.g., epilepsy), and (3) have an IQ above 70. Although these criteria prevent clinical staff from being overrun, allowing them to tailor care towards specific needs, they also present a barrier to individuals who need specialized care but don’t meet the eligibility criteria. This is especially true for individuals who are at-risk for psychosis.
According to the Structured Interview for Psychosis-Risk Syndromes, the at-risk for psychosis syndrome is characterized by similar symptoms seen in psychosis, including positive (e.g., hallucinations) and negative (e.g., flat affect) symptoms, disorganization (e.g., odd behaviour or appearance), and general symptoms (e.g., sleep disturbances and dysphoric mood). People with the at-risk syndrome experience diagnostically mild symptoms compared to threshold-level psychosis. However, the experience of the at-risk state is associated with its own challenges and needs that are far from “subthreshold”. For example, studies demonstrate that the at-risk syndrome is associated with comorbid non-psychotic mental illnesses (e.g. mood and anxiety disorders), poor social and occupational functioning, and high levels of distress. Qualitative research has also highlighted that stigma is a frequent barrier to disclosing and initiating help-seeking among this population. People at-risk for psychosis have described feeling “broken” or “abnormal” with fears of going crazy. In other words, this syndrome can significantly impact one’s ability to thrive in multiple life domains.
Specialized services for at-risk mental states are relatively less common than early intervention programs. A few years ago, I completed my Master’s research within the single at-risk mental health service that exists in a catchment region of Montréal. This outpatient clinic is co-located with the early intervention program for psychosis, allowing continuity in clinical care should a threshold-level psychotic episode emerge. Services offered at this at-risk clinic include case management, medication (with the exception of antipsychotic medications), regular meetings with a psychiatrist, access to psychotherapy, and other services as needed. My Master’s thesis examined the experience of help-seeking and unmet need among people at-risk for psychosis who were actively receiving care at this clinic through qualitative interviews. Over the course of these interviews, I learned that the journey to the clinic’s doors was not ideal.
The pathway to the at-risk clinic was difficult for most participants. Barriers involved lack of knowledge about the at-risk state among healthcare providers as well as unavailability of specific intervention programs. Because at-risk symptoms often resemble milder versions of psychotic symptoms, at-risk patients are generally considered as having symptoms that are too severe for general medical management, but not severe enough for an early intervention program for psychosis. One older participant described feeling as if other services were running him back and forth, unsure of where to send him; an experience he called the “waiting game”. Another participant explained that when his symptoms turned to self-harm, he needed to access more formal psychiatric services because the social support he was receiving from a community organization was not adequate enough to meet his needs. Relatedly, the lack of awareness of the at-risk clinic led to many participants to initially access mental health care via the emergency room (ER) as they did not know where else to go. The ER was described as traumatic, scary, and stressful by all who went there. While some local walk-in primary care clinics (also known as CLSCs) have social services, one participant described his symptoms worsening while he was on a waitlist for such services. Eventually, he was recommended to go to the ER by a CLSC worker in order to access mental health care faster.
Each participant I interviewed needed help to manage their mental health problems and yet, each met some barrier related to their diagnosis. If not for the existence of the at-risk clinic, these participants may never have received the high-quality care they needed and deserved. Uncertainty around case identification and knowing when and where to get help are prominent challenges experienced by referring clinicians, caregivers, and people at-risk (see Corcoran et. al, Boydell & Ferguson, and Allan et. al). As a result of these challenges, delays to accessing existing specialized care for the at-risk syndrome can be as long as 2.5 years. The consequences of lengthy delays are detrimental. As I learned from my own Master’s research, symptoms can worsen while people wait to receive needed care.
Eligibility barriers are not unique to people at-risk of psychosis. Delays in accessing care occur for many individuals experiencing their first episode of psychosis, even when they have a relatively clear diagnosis and more available specialized services. These patients can still run into eligibility barriers that prevent them from accessing an early intervention program, such as having organic psychosis, having an IQ that is too low, being too young or old, or having affective or substance-induced psychosis (an exclusion criterion in some early intervention programs outside of Montréal). As a result, pathways to care are often tortuous and lengthy for those with threshold psychosis, and delays can range from months to even years. These delays, in combination with all the intra- and interpersonal challenges related to psychosis, are again detrimental, as a lengthy time between psychosis onset and receiving care is a robust predictor of poorer outcomes (see Penttilä et. al, and Fusar-Poli et. al).
The limited ways in which specialized services are integrated into the broader mental health care system can be detrimental to individuals who need care. All people, regardless of whether their distress meets diagnostic criteria or not, have a right to high quality care. The lack of integration of these specialized services into the broader mental health care system, as well as lack of funding and training, often result in people falling through the cracks, particularly when facing stringent eligibility criteria. The argument that specialized services and their associated eligibility criteria are necessary to protect limited resources may seem valid at face value, but it misses the larger issue that mental health services are overall underfunded. Specialized services appear to be bandaids to these much broader system-level limitations. If we do not make mental health care more accessible and allocate more resources, we are perpetuating situations whereby some people will never receive any care, no matter how dire their situation may be. And that is, frankly, unacceptable.
Acknowledgements
I would like to thank my friend and colleague Sherry Hou for generously providing suggestions that improved this work. Sherry is a PhD Candidate in the Department of Epidemiology at McGill University and her work focuses on mental health and caregiving among older adults.
Sarah McIlwaine (she/her) holds a Master of Science in Psychiatry and is currently a PhD candidate in Epidemiology at McGill University. She has over seven years of research experience using both qualitative and quantitative methodologies. Her research expertise includes clinical and developmental antecedents of youth mental health, and early psychosis. Leveraging her expertise in psychiatry and epidemiology, her doctoral work focuses on mental health service use patterns among individuals diagnosed with early psychosis in Ontario, Canada.