A community-based initiative to improve transgender mental health in Canterbury, New Zealand

Keywords: Mental health, primary care, transgender.

‘Transgender’, ‘trans’, and ‘gender diverse’ are umbrella terms used to describe individuals who identify their gender as different from the sex that was assigned to them at birth. This includes people who are transitioning from one sex to another (male to female, female to male), but also includes people who identify as non-binary; that is, within, outside of, across or between the spectrum of the male and female binary. This definition is taken from Canterbury Community HealthPathways, a password-protected website that provides locally agreed online clinical guidance and process information for practice teams in Canterbury, New Zealand.

The transgender community experiences a high rate of mental health issues and therefore has a high need for mental health interventions. This is documented in ‘Counting Ourselves: the health and wellbeing of trans and non-binary people in Aotearoa New Zealand’ (2019), which has, as a key recommendation, the improvement of trans- and non-binary people’s mental health, as well as other related literature.^1–4

New Zealand is currently divided into 20 district health board (DHB) regions. DHBs are responsible for funding and providing health services in their area. Canterbury DHB covers the mid-South Island, including the urban centre of Christchurch. It is the second largest DHB in New Zealand by both population and geographical area. The Canterbury health system has a key strategic objective of delivering care close to patients’ homes.

In 2019, a working group came together to improve health care for the Canterbury transgender community (referred to as ‘the community’ throughout this paper). Their aim was to co-design and implement a comprehensive system for transgender health care that filled in the gaps in care that existed at that point: no locally agreed guidance for general practice teams and a lack of mental health support for patients with mild-to-moderate needs who did not meet the threshold to be seen by Specialist Mental Health Services. The group included members of the transgender community, advocates, and providers from across the Canterbury health system. This work was coordinated by a general practitioner (GP) with a special interest in transgender care. The work was initially funded by Pegasus Health, a local Primary Health Organisation, as part of the Health Quality and Safety Commission’s Ko Awatea co-design programme that supports quality improvement in health care.

A major need identified by the working group was for quality mental health support delivered by providers informed about, and skilled in working with, the transgender community.

Funded psychological packages of care were put in place. Through these, mental health support was available in the community for transgender children, youth, and adults who would benefit from this treatment, but could not otherwise afford it, and where all other funding options were exhausted or unavailable. The inability of patients to afford care was taken in good faith: if general practice teams indicated on their request that patients could not afford to pay for treatment, this was accepted as fact.

Under the packages of care, patients were referred by their general practice team to a designated trans-competent psychologist, psychotherapist, family therapist, or peer support worker. Providers were deemed ‘trans-competent’ if they had previous experience working with this community, or if the workgroup was satisfied the provider was willing to upskill in this area.

Packages of care were available to patients of all ages who identified as transgender, non-binary, gender diverse, or gender-questioning, and who had mild-to-moderate psychosocial issues that did not meet the threshold for referral to secondary care. The packages focused specifically on providing mental health support and treatment rather than assessing readiness for hormones or surgery. Patients were directed to other DHB-funded or private providers for this. Exclusions included the patient’s care being covered by the Accident Compensation Corporation (New Zealand’s no fault, universal injury compensation scheme), the patient currently being seen by secondary mental health services, and if the request was primarily for drug and alcohol intervention.

These criteria and exclusions were explained on the Canterbury Community HealthPathways website. The information was provided as part of a suite of newly created transgender health pathways that covered assessment, management and request criteria and process for transgender care across different age cohorts (children, youth, and adults).

General practice teams sent the DHB requests for providing mental health care to transgender patients through the community-based initiative to improve transgender mental health using the Electronic Request Management System (ERMS), a secure referral system accessed from practice computers. They indicated whether the request was for peer support or psychological services. A specific provider could also be selected at this point by the patient or GP, if desired.

Requests were reviewed to ensure they met criteria. This review was done weekly by a GP with a special interest in transgender care who was contracted for this purpose. The reviewer used the electronic review system built into ERMS.

If the GP reviewer confirmed that the request met eligibility criteria, it was delivered electronically to the selected provider. If the patient or referring GP had not indicated a specific provider, the GP reviewer chose one at this point, considering factors such as patient age (some providers had experience with particular age groups) and providers’ current ability to see the patient in a timely fashion. The GP reviewer also offered advice and navigation about other issues mentioned on the request.

If a request did not meet criteria, it was returned to the referring general practice team with a decline reason and alternative advice (e.g. if the request was for readiness for hormones or if the patient’s needs would have been better met by a different service, they were advised to refer the request to an appropriate DHB or private service).

When providers received a request, they contacted the patient to organise an initial appointment. Providers delivered up to NZ$900 (excluding Good and Services Tax) of treatment per patient in line with their normal clinic processes and rates. Patients paid no fees as the initiative was targeted to patients who could not otherwise afford care. Providers invoiced the Canterbury Initiative, a function of the Canterbury DHB, either monthly or at the end of treatment.

Providers, including peer support workers, completed the Depression Anxiety Stress Scale (DASS-21) at the initial and final appointments for each patient. This consisted of administering a 21-item questionnaire to the patient, which produced a quantitative indicative score for each of depression, anxiety, and stress. The DASS-21 was chosen by the providers as an evaluation tool for the initiative as it is well-validated, comprehensive (covering depression, anxiety and stress), but not onerous to administer as it is relatively short.⁵ DASS-21 scores therefore provided an indicative, if imprecise, snapshot of function and challenges for referred patients.

The initial experience over 9 months (July 2020 to 31 March 2021) is reported here.

In the first 9 months of the initiative, there were 139 requests; 122 (88%) were accepted by the GP reviewer; 17 were declined (12%). The main reasons for declining requests were that they were for readiness for hormones or the patient’s needs were better met by an alternative service (eg eating disorders).

Of the 122 patients accepted into the programme, 85 went on to receive a package of care. Thirteen patients were awaiting an appointment at the time of data analysis. Twenty four patients were accepted for a package of care but did not receive one for the following reasons: four patients could not be contacted to organise an appointment; one patient declined to receive a package of care when contacted by the provider; 19 did not receive care for miscellaneous other reasons.

The following analysis relates to the 85 patients who were accepted for a package of care and subsequently received this care. There was an average time-to-treatment of 44 days from providers receiving a request to first patient appointment.

No birth information was available for six patients. Gender assignment at birth was female for 40 patients and male for 39 patients. Of these, 28 patients identified as male, 25 identified as female, and 16 patients identified as non-binary. Nine patients described themselves as ‘uncertain’ about their identified gender. No identified gender information was available for seven patients.

Patients’ ages ranged from 12 to 46 years: 76% of patients were aged ≤25 years. The mean patient age at referral was 21 years.

According to ethnicity recorded by general practice teams, in line with the Ministry of Health Ethnicity Data Protocols, most patients who received treatment were New Zealand European, 73 (86%). Other patient ethnicities were: Māori, 8 (9%) and Asian, 2 (2%). No Pacific or Middle Eastern, Latin American or African patients were seen under this scheme. This compares to an enrolled general practice population in Canterbury of NZ European 76%, Māori 9%, Asian 11%, Pacific 3%, Middle Eastern, Latin American and African 1% (data from March 2021). Ethnicity information was not stated for two patients.

To establish why patients were referred for a package of care, the GP project lead retrospectively reviewed the referral requests and categorised the referring GPs’ stated reasons for referral. Requests were not SNOMED or ICD coded (i.e. against standardised diagnostic codes), meaning the terminology and diagnoses were not consistent across requests. The three most common reasons were: dysphoria (16), anxiety (15), and low mood or depression (14).

Some requests had more than one reason for referral, including a low number with three or more reasons for referral. Some requests indicated that patients were taking a mental health medication, most commonly a serotonin selective reuptake inhibitor. Other referrals did not supply medication information.

By August 2021, before-and-after DASS-21 scores were returned for 42 patients. Paired-samples t-tests were conducted to compare before-and-after scores for depression, anxiety, and stress. We used a 95% confidence interval for estimates. There was no statistically significant reduction in depression; before (mean = 11.74, standard deviation (s.d.) = 4.13), after (mean = 10.69, s.d. = 5.32), P = 0.19. There was also no statistically significant reduction in anxiety; before (mean = 10.5, s.d. = 5.61), after (mean = 9.26, s.d. = 5.40), P = 0.055. However, was a statistically significant reduction in stress; before (mean = 13.29, s.d. = 5.15), after (mean = 11.55, s.d. = 4.96), P = 0.01.

1. The uptake of this initiative (85 patients receiving treatment in 9 months) demonstrated the demand for psychological care for the Canterbury transgender community. This is consistent with other research that has pointed to the high mental health needs of the transgender community.^1,6–8

2. The model of care (referral from primary care team to a community-based therapist, with patients then returning to primary care) is consistent with previous research that has identified primary care as a suitable arena in which to deliver transgender care.³ Previous research has also pointed to the importance of general practice teams in enabling this community to access mental health care.⁴

3. Informal and anecdotal feedback was that the packages of care have been well-received by the community. Feedback from whānau (te reo Māori term used in this context to signify ‘extended family’) was also that they valued the support as no funded interventions had previously been available in this space for their whānau (family) member. Although this review has used quantitative data and informal feedback from patients, qualitative study of the patient experience undergoing the packages of care and what they would like from this care would provide additional useful insights.

4. The DASS-21 results did not point to any significant reduction in depression or anxiety scores for patients, but did point to a significant reduction in stress. Further analysis could explore the reasons for this. Some providers reported that DASS-21 was not fit-for-purpose as patients may have presented with co-morbid diagnoses not covered in, or confounding, this assessment (e.g. attention deficit hyperactivity disorder, learning disabilities, personality disorders). It may also not capture appropriate outcomes for some diagnoses (e.g. eating disorders, personality disorders). Sometimes symptoms increased with therapy, uncovering additional areas of distress (eg sexual trauma). Additionally, it was suggested that the funding would not allow a long enough course of treatment for some presentations. It could be that this intervention was not right to treat depression and anxiety in this patient cohort, but the lack of a control group also meant it was difficult to evaluate the initiative using the DASS-21. The DASS-21 has since been replaced with two questions to patients to evaluate the initiative’s efficacy. Patients are now asked how helpful they found that session (rated out of 10, with 10 being really helpful and 1 not helpful at all). If they choose a score of ≤5, they are asked what would have made the score higher.

5. Better coding of request reasons would provide more consistent data.

6. The engagement with and selection of psychologists and peer support workers were central to the success of this initiative. Prior to the initiative starting, some providers were already working with the transgender community, whereas others were not, but were interested in doing so. Peer groups were formed, which allowed new providers to train and upskill in the area. The peer groups had shared meetings with GPs and peer support workers and had approximately 35 members in total across all professional groups.

7. The packages of cares are being iteratively improved. For example, since this reporting period, the model has evolved to primarily provide peer worker support to most patients, with psychological support available for a lower number of patients with more complex needs, or who still require psychology input after peer support. As well as better meeting the needs of patients, this may be a more financially sustainable model.

8. Wider health system context. In April 2021, the New Zealand government announced its plan to abolish DHBs and replace them with a centralised entity called Health New Zealand, and to establish a Māori health authority.⁹ An aim of these changes is to improve equitable access to services, irrespective of where patients live. We do not yet know the effect the health system reforms will have on DHB initiatives such as the transgender packages of care. However, community advocacy and consultation on this process has advocated for the successes of each DHB, such as these packages of care, to be maintained in the new system. Local leadership and structural changes in the Canterbury DHB may also affect the future of the packages of care.

The data that support this study cannot be publicly shared due to ethical or privacy reasons and may be shared upon reasonable request to the corresponding author if appropriate.

This paper was prepared as part of the authors’ roles with the Canterbury Initiative.

Lisa McGonigle is employed as a project manager by the Canterbury Initiative, Canterbury DHB, which funds the packages of care. Rebecca Nicholls is contracted to Canterbury Initiative, Canterbury DHB, which funds the packages of care.