8.1 Put people accessing services at the centre

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8.1.1 Introduction

In chapter 3, we described the reality for people facing mental health and addiction challenges in New Zealand and how the future should look. There is widespread acknowledgement of the need for people to be at the centre of everything we do, but the rhetoric often does not match the reality.

We have a system based on the directions of governments and funders and dominated by providers, rather than the needs and preferences of the people using it. Even though mental health was the first part of the New Zealand health sector to legislate for patients’ rights (albeit in the context of compulsory assessment and treatment), people have not been placed at the centre of mental health and addiction services.

In this chapter, we affirm the overarching principle that people accessing services must be at the centre of the mental health and addiction system.

8.1.2 Issues

We know how hard building a consumer-centred system is, but during this Inquiry far too many people told us they were not treated with kindness, dignity and respect. These types of stories are not restricted to the health system – people dealing with other government agencies and social services (such as Work and Income) often feel belittled and unsupported. For many people trying to access services, communication is poor and information, choice and consent are lacking. A consumer-centred system would prioritise the least intrusive care and support, provided in the community and close to home.

Thirty years ago, Judge Silvia Cartwright noted in the Report of the Cervical Cancer Inquiry that “the focus of attention must shift from the doctor to the patient” and recommended an amendment in New Zealand law to provide for a statement of patients’ rights.¹⁷⁷ However, despite the introduction of the Code of Health and Disability Services Consumers’ Rights and its strong framework for high-quality, consumer-centred care and support, we still have some way to go to fulfil Cartwright’s vision.

From the perspective of the people seeking to access the system, it too often feels fragmented, confusing and difficult to navigate. Many services are not provided in a holistic way that is consistent with an individual’s needs and preferences. Different services often do not talk to each other (even within the same organisation) and do not coordinate their responses across sectors.

Seclusion, restraint and compulsory treatment are overused, especially for Māori and Pacific peoples, within our mental health system. We note that the Mental Health (Compulsory Assessment and Treatment) Act 1992 (the Mental Health Act) has been criticised for its lack of consistency with the United Nations Convention on the Rights of Persons with Disabilities.

While good examples exist of effective co-design, people with lived experience of mental health and addiction challenges, including Māori and Pacific peoples, are often on the periphery of the planning, design and delivery of services – relegated to an advisory group with little influence or represented by a single person appointed to a board or committee to provide ‘the consumer voice’ with little support or guidance. How well district health boards (DHBs) include the voices of consumers in their governance, policy, planning and service development varies around the country. There are differing levels of engagement with services at local, regional and national levels. The use of people with lived experience as trained peer-support workers and of consumer advisory groups is inconsistent. Variation also exists in how well DHBs resource their consumer advisors to provide support and link with consumer networks.

8.1.3 What needs to happen

Putting people accessing services at the centre of mental health and addiction services should permeate all service planning and delivery, and not just be an action point to be ticked off.

We want to see renewed prominence given to the rights of consumers under the Code of Health and Disability Services Consumers’ Rights, including the right to be treated with respect, the right to dignity and independence, and the right to be fully informed. It is concerning that some people do not know their rights and how to exercise them. They need more information about how the Code relates to mental health and addiction services, and providers need more training about how to embed the Code in service provision. The Health and Disability Commissioner should play a lead role in this area, particularly in the delivery of specific initiatives to promote respect for and observance of Code rights by providers and awareness of their rights on the part of consumers.

As noted in chapter 11, the Mental Health Act needs to be urgently repealed and replaced to affirm and strengthen the rights of people who need intensive mental health support, including their right to effective treatment and care. This includes supporting people and their whānau to access support early, make decisions about their care, have choices, access respite options easily and be subject to the least restrictive interventions, in a manner that seeks to protect and enhance their mana, dignity and wellbeing.

Mental health and addiction is not the only area in New Zealand’s health or social services where we need to shift from a provider-centred system. The State Services Commission is proposing significant reforms to the New Zealand public service. As part of reforms to the State Sector Act 1988 under consideration, we suggest the introduction of a principle that consumers of all public services should be treated with fairness, dignity and respect.¹⁷⁸ This could be incorporated as one of the proposed set of principles and values being consulted on. It would be consistent with the concept of consumers being at the centre of all public services.

At a practice and implementation level, we need to see more examples of genuine co-design processes and more people with lived experience supported in governance and leadership roles in agencies commissioning and delivering services. Shifting to a person-centred model of care encompasses everything from service delivery to governance and decision-making. Having consumers’ voices in isolation or providing only tokenistic involvement in processes, is not enough to have a positive impact. Including the voices of people with lived experience in our system means we need to actively facilitate their involvement in processes, including by supporting individuals and groups with the time, resources and training required to engage in effective co-design.

This can be achieved in a variety of ways and at a variety of levels. For example, in chapter 4, we recommend that a full spectrum of mental health and addiction services be developed through a co-design process. In chapter 12, we highlight the importance of the representation of people with lived experience in the makeup of the new Mental Health and Wellbeing Commission. We also need to plan for, train and support a greatly expanded peer and cultural workforce (discussed in chapter 4), which is a highly valued and important part of service delivery teams.

Service planning should start with knowing who service users are and understanding their needs and circumstances. Feedback from these people and their families and whānau is a critical component of service improvement and should be built into processes (for example, by using a real-time feedback tool like Mārama¹⁷⁹). Other approaches include using methods such as Knowing the People Planning¹⁸⁰ and filling key data gaps (discussed in chapter 4). The summary of submissions from this Inquiry – capturing the voices of the thousands of tāngata whaiora and families and whānau who shared their stories with us – is a valuable resource for future planning, funding and design of services and will be published separately.

Finally, the variation across DHBs in how people with lived experience are involved in governance, policy, planning and service development needs to be addressed. The work of the Health Quality and Safety Commission, through its Mental Health and Addiction Quality Improvement programme, provides a national model of partnership between a national leadership body, people with lived experience (and their families and whānau), and providers. The Health Quality and Safety Commission also leads a Partners in Care work programme for DHBs, which provides strong guidance on how to involve people with lived experience and their families and whānau. This includes a guide for DHBs on improving engagement with consumers, a co-design Partners in Care process, training modules for service user representatives, establishment of service user advisory councils, and case studies on including service users in governance.

We know that some DHBs consult people with lived experience, but often the big strategic decisions have been made without their input. We were told, for example, of DHBs that consulted well on the design of new inpatient facilities, but only after they had made the decision to build them. People with lived experience need to be involved earlier, in governance and strategic decisions about priorities before decisions are made that often bed in existing service models. Leadership, advice and participation help ensure mental health and addiction services are consumer- or people-focused, with an emphasis on recovery and wellness.

Consumer input should be a standard part of experience-based co-design. DHBs should be required to include and support people with lived experience in mental health and addiction governance, planning, policy and service development. This requirement should include developing a well-supported group of consumer advisors who are resourced to provide their DHBs with meaningful, long-term engagement in mental health and addiction processes. Similar requirements could extend to other organisations such as primary health organisations and non-governmental organisations (NGOs).

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