Stories of change

Totara House

What:A specialised multidisciplinary out-patient service for people who experience their first episode of psychosis.

Why:To assess early signs of developing psychosis and address initial stages of experiencing psychosis.

How:An intensive two year involvement with the service.

Target:Young people aged 18-30 years.

Where:Christchurch.

Early intervention in psychosis service

"... our people who've come, having this attitude of ‘you're the one with the problem, not me' and then turn round within two years and walk away with a job and a life. Those are the ones that have told the story." Mark Turner, PhD, researcher, Totara House.

The profile

Totara House provides an early intervention service for psychosis for people living in Christchurch. The city's population is about 380,000 and the service has a case load of about 100 people. Service users living outside the Christchurch metropolitan area and with first episode psychosis are serviced by community mental health rural teams, which Totara House liaises with when needed.

Totara House is a multidisciplinary service with full and part-time employees. This includes a clinical manager, two psychiatrists, one psychologist, two social workers, five mental health nurses, a cultural worker, consumer advisor, researcher, and an administrative team. The service is funded by Canterbury District Health Board (CDHB). The team provide case management support and therapy to service users. A full-time key worker can have a maximum case load of 15 individuals. All case managers have relevant tertiary qualifications, external supervision and ongoing training is mandatory. Case managers have training in cognitive behavioural therapy, motivational interviewing and interpersonal psychotherapy.

Totara House is an out-patient service offering two years of intensive support to individuals experiencing early psychosis. After this period, service users are discharged to a relevant mental health service or general practitioner (GP). If people no longer need the service they are discharged before the end of the two-year period. The service also actively liaises with local non-government organisations (NGOs) and use NGOs' resources to provide people with additional social support, accommodation and employment opportunities.

Interior of Totara House

The beginnings

Totara House was established in 1996 as the first early intervention in psychosis service in the country and was followed by services in Wellington, Dunedin and Auckland. It was established in response to the needs identified in the Mason Report (Ministry of Health, 1996) for development of adequate mental health services.

Kay Fletcher, current CEO of Christchurch's Comcare Trust, led the project to establish the service. Kay was on the original national steering group that set up early intervention services, and was well aware of the importance and need for such services. The set up of Totara House was also supported by Jim Crowe, an advocate for families of individuals with experience of mental illness.

At the same time there was strong international attention on the development of such services in Australia, England and Canada, which further supported Kay's efforts and justified the funding allocated for early intervention services.

Psychosis affects not only the brain tissue of the individual, but also the social functioning of service users. The main goal for establishing the early intervention service was to improve the overall wellbeing of individuals and their family/whanau. The earlier adequate treatment began, the better the outcome.

Max Birchwood coined the term "critical period hypothesis", which is important in the philosophy of early intervention for psychosis. While some countries, such as Denmark (OPUS study, one of the largest studies in early detection and prevention of psychosis) and Canada (PEPP service), consider the critical period to be five years as defined by Max Birchwood, most services in New Zealand are funded for 18 months to two years. Totara House is funded to provide service to individuals who experience first episode psychosis for two years.

Soon after the establishment of Totara House, opportunities were identified to carry out research to assess and inform best practices in the provision of early intervention. Mark Turner began work with the service three years after its commencement. At present he continues to gather a large amount of invaluable data that has become a foundation of the team's ongoing work.

Mark Turner

Originally the organisation was located in an old nurses' hostel at the former Sunnyside hospital site. Totara House moved to its current location about seven years ago. The building provides a ‘youth friendly' environment in the heart of town with the interior colour scheme chosen by service users.

The service initially had rehabilitation stream funding that was later transferred to adult mental health services. The team is stable, with professionals working on average at least five years there.

The process

One of the most important ways to improve outcome in psychosis is to initiate treatment early. This means individuals presenting with signs of psychosis need to be identified early and referred for assessment and treatment immediately.

Totara House provides care to individuals aged between 18 and 30. Younger people are referred to youth speciality services. The age of service users reflects a period of great life changes, from living with parents to becoming independent, getting into long-term relationships, and having their own children. For this reason, the communication between staff and service users is carefully maintained and therapy is adjusted to the specific needs of the individual.

The majority of referrals (65 per cent) come from in-patient units, only about 8 per cent of referrals come from GPs. The assessment includes the Positive and Negative Syndrome Scale (PANSS), Health of Nations Outcome Scale (HoNOS) and Quality of Life Scale (QLS) measures.

During the acute phase, service users are seen at least once a week (preferably in their home) by case managers, and every six weeks by a psychiatrist. Once service users have stable control of their condition, they are seen fortnightly by case managers and every three months by a psychiatrist. The frequency of meetings can be modified if required.

An important part of early intervention is being youth friendly. This is reflected not only in the Totara House building, but also in the attitudes of the staff members and their interaction with service users.

Case managers work with service users to develop a treatment plan including early warning signs. In case of hospital admission, the case manager keeps in contact with the service user to ensure continuity of care. However, once in hospital the responsibility for treatment is transferred to that unit.

The service has a comprehensive substance abuse treatment programme with all case managers trained in motivational interviewing. A minimum of two specialist alcohol and other drugs (AOD) case managers are available part-time for individual treatment of substance abuse.

Service users are offered the chance to participate in the groups run as a part of the service. At present these groups are:

a recreation group, run by one of the social workers in the service, that includes a number of adventure activities such as riding bikes, abseiling, river crossings, and caving
an art therapy group, run by the clinical psychologist, focussing on the journey of recovery
a peer support group is currently in the process of being established.

Totara House understands the important role of family in the life of an individual with psychosis. The service offers a three-session specialised family group, providing psychoeducation and support to those who have a relative with psychosis.

Where transport poses a difficulty for service users, vouchers are available for taxis and buses, or pick-ups can be made by the person's case manager.

In addition to the direct work with service users and families, Totara House provides education to other mental health services, GPs, school counsellors, and community organisations. The aim of this promotional and educational work is to assist better understanding of psychosis and encourage early referral to the service.

Totara House team. From left: Mike Carey, Sigi Schmidt, Mark Turner, Helen Mora,
Estelle MacDonald, Mary Duggan Mark Radford, Jenni Smith, Toni Falcolner, Jim Higgins

The unique approach

"... when they [staff] came in as a team member, the research was part of the job description.", Mark Turner, PhD, researcher, Totara House.

Totara House is one of the few early intervention services in New Zealand that employs a researcher with relevant training and background.

Mark Turner's work is focused on improving the service, using evidence generated by the team. Mark provides project support for staff members' studies, investigates specific service related areas, and assesses the effectiveness of the treatment provided by the team, based on New Zealand and international standards.

A large part of the research work is carried out as an internal audit. He uses information on all those presenting to Totara House to assess the outcomes and ways to improve on the services. Periodically Mark provides in-service training to inform the staff about latest findings from investigated topics.

Another distinct characteristic of Totara House is the consideration of quality of life in individual assessments. QLS is used in addition to the HoNOS and PANSS because it measures a range of aspects in one's life instead of just looking at the presence or absence of early psychosis symptoms.

The results

"We are able to show that we are making a difference." Mark Turner, PhD, Researcher, Totara House.

There have been a number of projects run through the years at Totara House, assessing best practice and its application in the service.

One project involving pathways to care identified there is still limited knowledge of early psychosis assessment and appropriate response from GPs. About two-thirds of service users are referred to Totara House from psychiatric in-patient units and 8 per cent from GPs. Half of all people referred to the service were, however, seen by their GP for mental health-related issues within six months prior to their crisis and admission to hospital. International best practice guidelines suggest only 30 per cent of service caseloads should come from in-patient units due to the associated trauma adding to the person's issues. The project outlined that timely and early engagement with relevant services is one way to reduce trauma and associated stigma, and improving GPs' knowledge is key to achieving this.

Another area of interest is the families' satisfaction with service provision. A measure of satisfaction was initiated at Totara House eight years ago and was developed in focus groups by families. The initial results indicated there was general satisfaction with service provision. However, there was a significant difference between families receiving relevant information (95 per cent) and actually understanding this information (75 per cent). After introducing adequate changes, 90 per cent of families now report they understand the information about their relative's condition and progress with the services. Based on the positive results from working with families at Totara House, an ethics proposal is being put forward for a qualitative evaluation of families' experience of first episode psychosis.

Another research project on the effectiveness of a peer support group has received ethical approval. The project will be facilitated by the consumer advisor with the service and a previous service user. The study will assess self-esteem, quality of life and other factors aimed at identifying individual changes and indicators of program success. Successful outcomes will help with business plans to implement such services more widely.

A further project has recently been approved to follow up with service users for two years after their discharge from Totara House. Preliminary data shows 65 per cent of service users get hospitalised before engaging with Totara House, 50 per cent are hospitalised while they're with the service, and 30 per cent get re-hospitalised in the two years after discharge. Re-hospitalisation figures are significantly lower than the 45 per cent reported in similar Canadian studies. It is not known whether Canadian figures include not only hospitalisation but also temporary stress reduction accommodation facilities (respite) which makes it difficult to compare the results of the New Zealand research. But these results do suggest that services are preventing some in-patient usage, at least in the first few years following discharge. Predictors of re-hospitalisation are being analysed to improve service provision.

Assessment of service users shows that approximately 75 per cent of referred individuals engage with Totara House in the first 12 months, compared to 50 per cent internationally. These findings show Totara House has developed an effective interaction with people, while at the same time pointing to areas where more work at engagement is needed.

The recreation group has proven to be very popular among service users. Mark Radford, the social worker who set it up, is evaluating the group's effectiveness for his Master's thesis.

"There's now strong evidence that cannabis causes psychosis." Mark Turner, PhD, Researcher, Totara House.

The lessons learnt

"There's got to be a new way of giving information to families and for them to actually acknowledge that they understand it rather than just got it.", Mark Turner, PhD, researcher, Totara House.

The philosophy of the service is to help service users return to their normal developmental trajectory and take back control of their lives.
The changes in implementation of clinical practice in Totara House are based on the rich collection of data about service provision.
The research findings showing positive results are grounds for consistent funding of the service.
There is strong research evidence regarding intervention within the critical period of two years and its long-term effects to warrant funding for national research in early intervention.

More information

Contact

Mark Turner at Mark.Turner@cdhb.govt.nz, or by phone (03) 3779 733.

Website

Totara House

Documents/links

Turner M., Boden J., Smith-Hamel C., & Mulder R. (2009). Outcomes for 236 patients from a 2-year early intervention in psychosis service. [Abstract]. Acta Psychiatrica Scandinavica, 120 (2), 129-137.
Simon, A. E., Lester, H., Tait, L., Stip, E., Roy, P., Conrad, G., Hunt, J., Epstein, I., Larsen, T. K, Amminger, P., Holub, D., Wenigová, B., Turner, M., Berger, G.E., O'Donnell, C., & Umbricht, D. (2009). The International Study on General Practitioners and Early Psychosis (IGPS). [Abstract]. Schizophrenia Research, 108(1-3):182-90.
Turner, M. A., Smith-Hamel, C., & Mulder, R. T. (2007). Prediction of twelve-month service disengagement from an early intervention in psychosis service. [Abstract]. Early Intervention in Psychiatry, 1(3) 276-281.
Turner, M. A., Smith-Hamel, C., & Mulder, R. T. (2006). Pathways to care in a New Zealand first-episode of psychosis cohort. [Abstract]. Australian and New Zealand Journal of Psychiatry, 40(5) 421-428.
For a list of other research projects and publications by Mark Turner, visit the database of New Zealand mental health research.