We heard that mental health services often make it difficult for individuals to stay connected to their families and communities. They acknowledged that mental distress can put immense pressure on an individual’s relationships with family and other networks, sometimes to the point of breakdown, and that family can generate and exacerbate distress. But relationships with family, whānau and community give lives meaning and provide a potential path back to wholeness. Many people described how mental health services have severed or jeopardised these relationships.
A significant number of submissions from families told of their being excluded, offered culturally inappropriate services or even treated with contempt or indifference.
People praised Whānau Ora providers for valuing the role of family and whānau in keeping people well and supporting their recovery. They wanted service providers to share information in an environment of trust and to work with families to enable their support role.
Families described being kept in the dark and excluded from treatment and discharge planning, even though they are the ones there for the long haul. Families and whānau reported struggling to support their loved one with complex needs or at risk of suicide while receiving little help from services, little education about what to do and limited respite. Families often felt excluded from care plans, treatment and follow-up, despite many times being primary supporters of their family member.
Submissions from family members said that privacy was used inappropriately as a reason for withholding information from them (for example, in discharge planning). Families spoke of loved ones discharged without the family being notified and without appropriate support, and some described subsequent self-harm or suicides they believe could have been prevented with family intervention.
Some submissions noted that family members may be part of the problem or have agendas that conflict with the individual’s best interests. Others expressed concern about clinicians sharing information without the consent of tāngata whaiora.
Families spoke of the difficulty of accessing advice, respite care or other forms of assistance to help them support their family member through mental distress and during recovery. They spoke of overloaded crisis services, a lack of integration and continuity of care, and having loved ones returned to their care with little information or support.
We heard from grandparents caring for their mokopuna while the parents were in residential programmes or in prison and from older people caring for adult children, concerned about what would happen once they were no longer able to provide or oversee care.
Some families said they were dealing with multiple intergenerational disadvantages, layers of trauma, limited skills and ongoing addiction. They asked for help to address their own wellbeing challenges.
Hundreds of submissions from families and whānau affected by suicide highlighted serious deficiencies in how they were supported through an extremely traumatic process. They spoke of lengthy police, coronial, DHB and Health and Disability Commissioner processes, feeling excluded from full involvement in DHB reviews, inadequate communication from services and professionals, a sense of being disregarded and excluded, a lack of affordable professional services, services that were not culturally appropriate for their grieving, and processes that were traumatising rather than healing.
Māori and Pacific peoples pointed to evidence that treating the mental health of an individual in isolation from family and community is ineffective and inappropriate for cultures that value collectivism. They argued that cultural approaches are vital to recovery and get much better outcomes – so should be funded and supported. Many Pākehā and other ethnic communities voiced similar concerns about treatment models that do not sufficiently acknowledge family, whānau and social context.
People were dismayed that many clinicians working from a biomedical model were reluctant to recognise cultural evidence and failed to appreciate the value of staff and support people from the individual’s own culture. Culturally appropriate services were described as rare and poorly resourced.