Letter to the Editor regarding ‘Falling through the cracks in science and clinical service – A call to action for people with OCD’

To the Editor

Dyason et al. (2022) put the case for a comprehensive strategy to address the needs of people in Australia who live with obsessive-compulsive disorder (OCD). Here, we broaden that argument to include Aotearoa New Zealand.

By and large, New Zealanders who experience OCD and their families negotiate the health system on their own and are not connected to other individuals and families whose lives are affected by OCD. This lack of a peer community has begun to change with the establishment of Fixate, a Facebook-based group for people in Aotearoa New Zealand who live with OCD or support someone living with OCD (also see www.ocd.org.nz).

New Zealanders who became connected via Fixate have now begun to advocate for better awareness and understanding of OCD, both in communities and among health professionals. Fixate has recently delivered a petition to parliament calling for timely and equitable access to OCD-specific treatment. There is now an identifiable OCD community in Aotearoa New Zealand with which clinical services, professional bodies, policymakers and researchers might engage.

Health agencies in Aotearoa New Zealand have long recognised that OCD-specific treatment should be provided. The National Health Committee (1998) and more recently Whāraurau (a national centre for Infant, Child and Adolescent Mental Health workforce development) advise a specific form of Cognitive Behavioural Therapy (CBT) known as Exposure Response Prevention therapy and selective serotonin reuptake inhibitor (SSRI) medication for the treatment of OCD.

Te Rau Hinengaro: The New Zealand Mental Health Survey (Oakley Browne et al., 2006) found that only 17.4% of people who experienced OCD made treatment contact at the time of onset. For those individuals who ever made contact (less than 70%), the median delay in seeking help was 7 years. People who experienced OCD had increased rates of suicidal behaviour and also of substance use (Scott et al., 2006).

Nearly two decades on, has there been any progress in terms of early diagnosis and access to OCD-specific treatment? A lack of data collection prevents direct examination of this question. However, our analysis of existing national datasets does provide a glimpse. Specialty mental health service use information (Programme for the Integration of Mental Health Data [PRIMHD] and Mental Health Information National Collection [MHINC]) and hospital admission data (National Minimum Dataset [NMDS]) from the Integrated Data Infrastructure (IDI) were used to identify individuals for whom a diagnosis of OCD had been recorded at least once at any point in time. Unfortunately these datasets do not encompass primary health services and so cannot provide insight into that level of care.

Among the Aotearoa New Zealand estimated resident population of those aged 5 years and above during 2018/2019 (4,590,558 people), only 5631 individuals with a recorded diagnosis of OCD were identified in these datasets. In contrast, an estimated international prevalence of ~1.1–1.8% in Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) would equate to ~50,000–83,000 people living with OCD in Aotearoa New Zealand. It is possible that this finding simply reflects a widespread failure to record the diagnosis of people who accessed the secondary level of care. However, it seems more likely that the undercount is due to people not seeking clinical support, not receiving the correct diagnosis and/or accessing only the primary level of care.

Analysis of IDI data further revealed that people with a recorded diagnosis of OCD were more likely to be European (15.8 individuals per 10,000 people) than Māori (8.6), Asian (4.3) or Pacific peoples (3.7). By comparison, Te Rau Hinengaro found that the prevalence of OCD in Māori and Pacific peoples was similar to that in the general population. This disparity indicates that research is required to assess whether barriers associated with seeking help and in accessing the correct diagnosis and/or secondary level of care in the public health system result in inequity.

The anecdotal evidence of Fixate members strongly suggests that there is an issue with the provision of clinical services for OCD. Fixate members report that OCD-specific treatment is unlikely to be available at the primary level of care and that they are often unable to access secondary mental health services. Some Fixate members are able to find and pay for private treatment. However, in both the public health system and the private sector, it seems that some mental health professionals have a limited and stereotypical knowledge of OCD.

In the DSM-5, a separate category was made for Obsessive-Compulsive and related disorders encompassing OCD, trichotillomania, skin picking disorder, body dysmorphic disorder and hoarding disorder. We call for the establishment of a working group on OCD and related disorders to develop a comprehensive strategy for expansion and upskilling of the workforce and for provision of clinical services in Aotearoa New Zealand.