8.2 Partner with families and whānau

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8.2.1 Introduction

We heard about the vital support and advocacy many families and whānau provide on behalf of family members who are experiencing mental health and addiction problems.

Key themes raised were:

• the desire of families and whānau to provide and receive information about their family member and to share in aspects of the care and treatment process
• the challenges facing families and whānau who are supporting family members, including the need for services that sustain their own wellbeing
• the importance of supporting people within their family and whānau and, for Māori and Pacific peoples, the advantages of Whānau Ora to health and wellbeing.

Families and whānau called strongly for more services to support those bereaved by suicide and for changes to the processes following suicide. This is discussed in chapter 10.

Families and whānau expressed differences of opinion, including about the diversity of support required, the level of actual and preferred family and whānau involvement, and the nature of interaction with their family member. However, many regarded family as critical to positive outcomes, providing a sense of belonging, identity, support and love.

Exclusion of family and whānau

A significant area of dissatisfaction for many families and whānau, including parents, partners, adult children, siblings, grandparents, and other relatives and friends, was their experience of marginalisation and frustration in trying to access services for their loved one and of frequent exclusion from communication. This was often despite their day-to-day role in providing support.

For many families and whānau, their main concern was positive outcomes for their family member experiencing mental health and addiction challenges. Families and whānau often felt compelled to advocate on behalf of their family member, because easy access to timely, relevant, accessible and integrated services was limited. Where services were available, despite families and whānau sometimes having an intimate understanding of their family member’s needs and history, their views were ignored, treated indifferently or given limited credence. For many families and whānau, this contributed to increased distress, anger, worry and, in some cases, tragic outcomes for their loved ones.

The importance of family and personal relationships in recovery is well recognised, yet the current mental health service model tends to be individualistic in its approach. There is growing evidence of the effectiveness of family inclusive practices, such as Open Dialogue,¹⁸¹ which aim to collaboratively support people seeking mental wellness.

For most Māori and Pacific peoples, the concept of whanaungatanga (extended family and relations) is critical to health and wellbeing,¹⁸² and the practice of working with an individual in isolation from their whānau is not culturally appropriate. Some services seek to be inclusive, but the lack of appropriate approaches makes doing that difficult. We heard that for whānau, Whānau Ora approaches, Kaupapa Māori services and Pacific-led services are strongly preferred. They are fully inclusive of whānau and value relationships as strongly as medicine.

Privacy and involvement in care and treatment

The complex issue of the privacy of people accessing services and family and whānau involvement in their care, treatment and recovery was raised repeatedly. Despite some polar positions on privacy, most families and whānau expressed a desire to receive and provide relevant information about their family member and to be involved in a way that supports good outcomes. Many submitters described themselves as being in a de facto caring role without the right information.

Some people with lived experience noted that it is crucial to uphold the rights of the individual to choose not to include others in their care and treatment and even to refuse the sharing of information about their care and treatment with family and whānau. They stressed that inclusion and partnership of family and whānau is context specific.

Clinicians sometimes choose to cite the Privacy Act 1993 rather than engage effectively with family and whānau, recognising the specific and different needs of the various participants and seeking mutual understanding.

Striking a balance between privacy and participation is difficult, exacerbated by the stigma some people feel when accessing mental health and addiction support. Many families felt that confidentiality can be maintained – while still giving them information and seeking their input – if there are clear guidelines for service providers that are understood and applied in practice.

Lack of support services for family and whānau

We heard from many families and whānau about the lack of services to support their own wellbeing during particularly difficult times when caring for a loved one. Many feel isolated and experience anxiety or depression themselves. They may support their family member at a high cost to their own mental and physical health.

Although some families and whānau find support networks and professional services in their community, limited support and respite options are available and not all families can afford them. This difficulty is exacerbated when a family member has complex needs, multiple challenges, chronic physical conditions or no agreed diagnosis. Not knowing where to go and the services available for support compounds the situation.

Family and whānau may also be struggling with their own complex challenges such as addictions, mental health problems, financial stress, discrimination, housing difficulties and other social determinants that are compounding stressors.

8.2.2 What needs to happen

Inclusion of family and whānau

Acknowledging the positive role of families and whānau in providing belonging, identity, support and care for their family member requires a more holistic approach to wellbeing, while respecting an individual’s right to privacy and autonomy. Families and whānau also have a vital role to play in the recovery of a family member from addiction.¹⁸³ People accessing mental health and addiction services have a legal right to be supported by the presence of a person (or people) of their choice.¹⁸⁴

Access to well-integrated, timely and appropriate services is essential for family and whānau advocating on behalf of their family member, as is a variety of service options from individual to family-inclusive approaches. Families feeling excluded by current processes need clear guidelines about the exchange of information, consistent communication and integrated processes.

Services that use more person-centred, holistic approaches were viewed positively by consumers and family and whānau submitters. Some noted that the introduction of Whānau Ora in 2010 represented a more whānau-centred approach to treatment and care, providing more holistic and wrap-around support for families and whānau in our communities than is commonly experienced. Whānau Ora services identify whānau priorities to enable autonomy and self-management and help develop a plan for realising whānau aspirations, providing what could be a useful service model for holistic care involving family and whānau.

We acknowledge that meaningful engagement with family and whānau is not always easy and may require more time and effort than just dealing with an individual. However, a health system that focuses on the treatment of individuals, without seeing their family and social context, is limited in what it can achieve and fails to take adequate account of vital supports for healing and recovery.

Balanced approach to privacy

Striking a balance between enabling the inclusion of family and whānau and protecting individual privacy can be challenging. The 1996 Mason Inquiry report discussed exactly this issue.¹⁸⁵ The submissions quoted in that report are almost identical in tone and content to the many submissions we received about families and whānau being excluded from the treatment of family members and loved ones. These issues are not new. It appears that much of the exclusion of family and whānau is driven by service practices, not the family member receiving the service.

We think the balance should shift towards embracing the benefits of including family and whānau to improve outcomes, while keeping legal protections in place to respect individual privacy. From our examination of the Privacy Act 1993 and the Health Information Privacy Code 1994 and discussions with the Privacy Commissioner, we conclude that the basic legal framework is sound and provides sufficient protection for individuals while still allowing family and whānau to be included in care and support.

As with any legal framework, guidance is crucial if the intent of legislation is to translate into good practice by the people at the front line. A variety of information is available, including extensive guidance from the Privacy Commissioner as well as guidance from the Royal Australian and New Zealand College of Psychiatrists, Ministry of Health, and Health and Disability Commissioner. This is a problem in itself – different messages from different organisations can cause confusion.

We consider these guidance documents should be combined into consolidated, updated guidance that key agencies endorse. The Ministry of Health should lead a process to develop this guidance, involving people with lived experience, families and whānau, the Privacy Commissioner, the Royal Australian and New Zealand College of Psychiatrists, the Health and Disability Commissioner, the Children’s Commissioner and other interested parties.

The starting point should be that family and whānau can be involved in treatment and care, subject to the wishes of the individual patient. This should be supported by service cultures that promote connection and whanaungatanga. Some people may decide to give full access to their family or whānau, others may authorise access only to information about medication and discharge, and some may refuse to allow any access. In addition, family and whānau should be given the opportunity to provide information relevant from their perspective about their family member, recognising the valuable role that contextual information plays in improving outcomes.

The new guidance will need to be widely communicated and promoted, with ongoing training for the sector. The training should include a focus on the requirement for consultation with family and whānau under section 7A of the Mental Health (Compulsory Assessment and Treatment) Act 1992 (or the equivalent provision in any replacement statute) and the application of Health Information Privacy Rule 11(1)(g).¹⁸⁶

The new guidance should also be built into relevant contracts, standards, specifications, guidelines, quality improvement processes and accountability arrangements.¹⁸⁷

Better support for families and whānau

Families and whānau are seeking more support for their own wellbeing. This is often so they can continue to effectively provide care for their family member. The support being sought includes information and advice, access to respite services, community support, peer support, and secondary and primary care options. The options available should reflect the diversity of families, including holistic family- and whānau-based services as well as individual-based support.

DHBs directly fund or contract with NGOs to deliver family and whānau support, and most also have mental health and addiction family advisors. However, support for families and whānau within the mental health and addiction sector is relatively underdeveloped.

Financial strain is evident among some families and whānau who find themselves in supporting roles. This strain is often due to having to minimise work commitments to support their family member, the cost of services, respite and specialised help, and travel and time costs.

The wellbeing support provided to families and whānau needs to be reviewed by the Ministry of Health and other relevant agencies such as the Ministries of Education and Social Development and Te Puni Kōkiri and improvements made. Consideration should be given to successful international models. We note that the United Kingdom and Australia have adopted partnership standards for working with carers of a person with mental illness and Australia has developed guidance and tools for implementing such support.¹⁸⁸

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