Involvement of Consumers and Families/Carers in the Design and Planning of Mental Health Services in New Zealand

• Who Says the Mental Health Services Have to Involve Consumers and Families?
• Why Bother Involving Consumers?
• What are the Ground Rules?
• I Don’t Want to be Cynical, But . . . Are these Documents Making a Difference?
  • The Health Funding Authority (HFA)
    • Consumer advisors
    • Family advisors
    • What do consumer and family advisors do?
  • Mental Health Service Providers - Statutory Services
    • What is happening right now?
    • What needs to be done?
  • Mental Health Service Providers - The Community Sector and Private Companies
• How Do We Know if All this Extra Consultation and Participation Will Make a Difference?
• Doesn’t it All Come Down to Money?
• In Summary
• References
  

Who Says the Mental Health Services Have to Involve Consumers and Families?

Mental health services in New Zealand are required by the government to consult with consumers and families/carers of consumers about service development. This requirement is spelled out more clearly in the statutory regulations for mental health services than for other health services, probably because of the historical failure of mental health services to adequately address issues of recovery and quality of life for “patients”.

Why Bother Involving Consumers?

The main aim of involving consumers and families/carers in service planning and provision is to improve service responsiveness to people who use the service, and to their families/carers. Continuous quality improvement, which most services should aim for, means listening to clients/customers and providing the service which best meets their needs. This process must begin at the beginning, with service planning, design and delivery.

What are the Ground Rules?

Three major government documents direct the provision of mental health services in New Zealand. Each has requirements to involve consumers and families/carers in service design and delivery:

• Moving Forward – the National Mental Health Plan for More and Better Services (Ministry of Health 1997)
• The National Mental Health Standards (Ministry of Health 1997)
• Blueprint for Mental Health Services in New Zealand (Mental Health Commission 1998).

I Don’t Want to be Cynical, But . . . Are these Documents Making a Difference?

Official directives for family/consumer involvement are, to varying degrees, being translated into action by service funders and providers:

The Health Funding Authority (HFA)
The HFA is the purchaser of most health services in New Zealand. Using public funding, the HFA buys mental health services from a variety of statutory and non-governmental organisations.

Consumer advisors
The HFA has had paid consumer advisors in its mental health division since about 1997. These consumer advisors participate in decisions about service configuration, geographical location, provider selection and so on. For example, recent decisions about funding and the location of early psychosis intervention services, or a new forensic centre, have been made with the participation of an HFA consumer advisor staff member. Consumers are also part of the HFA service quality monitoring review teams.


Family advisors
Family advisors will soon begin paid work for the HFA. It is recognised that families/carers of people with major mental illness are usually affected by the quality of professional help available to those people, and the families/carers have a perspective that may be different to that of consumer advisors. By the end of 1999 the Southern HFA region will have appointed family advisors.


What do consumer and family advisors do?
The job of consumer and family advisors is to network with consumers and families/carers in a particular region and to determine whether, from their point of view, the services purchased with public money are adequate.

• Are the services assisting the person to achieve the fullest possible recovery; and is the person’s quality of life improving?
• Are the individual and the family happy with the level of care and the progress being made?
• Are the services available to and appropriate for people of all cultures?
• Which mental health services are actually making a positive difference? Which services have no discernible outcomes?
• What is the best way to spend the available funding?

The answers to these questions should help the HFA target funding so that the only services that are purchased are those which provide positive outcomes for consumers and families/carers.

Mental Health Service Providers - Statutory Services
Hospitals and health services are required to ensure that the Mental Health Standards are observed within their services. Separate standards define consumer participation, and family and carer participation.

What is happening right now?
Statutory services are involving consumers and families/carers in several ways:

• As part of interviewing panels for the appointment of senior mental health clinical and management staff
• As participants in planning meetings for the physical design of mental health services, such as new buildings, relocation, renovation and so on
• As occasional participants in general "consultation with the community" meetings.

What needs to be done?
It is less common for consumers and families to play a major part in decision making when it comes to actual service design and delivery. A common complaint, therefore, is that by the time consumer and family advisors have been asked, decisions have already been made.

For the managers of mental health and wider health services, it is often a very foreign notion to actually involve the users of the service in the planning procedure. "Keep the customer satisfied" is not the philosophy in most mental health services, mainly because the "customer" has no choice about where to go to get those services. Consumers and families can only meaningfully participate in service planning and design where there is:

• A change in service managers’ attitudes, so that they routinely seek, respect and implement the advice of service users and families/carers;
• Development and implementation of management policy, which is explicit about whole service interaction with consumer and family advisors
• Empowerment and training of consumer and family advisors, to enable them to contribute positively
• Support for the consumer and family networks that advise the advisors.

Mental Health Service Providers - The Community Sector and Private Companies
Non-governmental organisations (NGOs) that provide accommodation, rehabilitation, vocational and other mental health services usually have boards that include consumer advisors. Less frequently, and depending on the service, there is a family advisor on the board. It is generally accepted that NGOs and not-for-profit service providers are more open to consumer and family input and advice, although some of the larger NGOs have the same degree of inertia and bureaucracy that exists in hospital-controlled services.

How Do We Know if All this Extra Consultation and Participation Will Make a Difference?

It might be time for mental health services to do some "before and after" market surveys. In general, users of mental health services do not give rave reviews about service quality. When mental illness issues hit the headlines, they are often accompanied by allegations that the services did not perform adequately, did not care for a person properly, or failed to predict impending incidents.

The expectation behind involving the service users and families/carers in service design and delivery is that this will improve a service’s responsiveness to its direct consumers, and to the wider community. However, meaningful evaluations of the effectiveness of consumer and family/carer advisors should be undertaken. The primary question must always be "has the change in service delivery resulted in a better quality of life for the person with a mental illness and his/her family/carer?"