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Many people spoke of difficulty accessing services. People described a system under stress characterised by long delays, overworked staff, inadequate environments, a lack of clear information and gatekeeping rules that served as barriers.

People have to fight and beg their way into services, and wait far too long. In the meantime everything gets worse and permanent damage is done … Most people find it incredibly hard to reach out for help. So why are we forced to prove that we’re worthy. (Service user)

We heard of services stretched to breaking point, a lack of timely, responsive and culturally appropriate access, few options and a lack of 24/7 services, disjointed care, and limited wellbeing and preventative interventions and initiatives.

For many submitters, the current system was not providing the help, care, oversight or holistic response required to meet the full range of mental health challenges from short-term distress to long-term mental illness. The result was a revolving-door scenario, a preventable escalation of personal distress and, tragically for bereaved submitters, the death of their loved one.

2.10.1 Fighting for access

A consistent theme in submissions was having to fight for access to mental health care due to high thresholds of acuity, limited and non-existent services, or complex care requirements beyond current service provision. We heard that some people presenting with a high risk of suicide were deemed ineligible for help and were unable to find timely, responsive service.

I was treated like I wasn’t ‘bad enough’. I wasn’t properly admitted and because I didn’t have scars from cutting or anything that could fix on the outside, they discharged me quite quickly. (Youth service user)

My father committed suicide in 2015. … If my father, an educated, intelligent, creative, powerful man, could not get access to the help he needed – even when he was persistent and explicit in seeking it – what hope does this system have of helping those even more vulnerable than he? (Family of service user)

People recounted being told their situation was not serious enough to meet the threshold for specialist services, a message they interpreted as ‘go away and only come back if your condition becomes life-threatening’. Having summoned the courage to ask for help, they felt ignored, minimised and not heard – denied an appropriate service or left in limbo awaiting space in a detox programme or respite care. People spoke of the cruelty of encouraging individuals, family and friends to seek help from mental health services that are unavailable or severely rationed.

The awareness campaigns, as necessary as they are, now make me angry. “It’s okay to ask for help.” That is a cruel and dishonest message to send to the public if you’re not going to provide the resources to provide that help. (Family member of service user)

Even when the need for services was acknowledged, people often had to wait a long time. Tāngata whaiora and families reported a constant struggle to gain access to specialist services or to cobble together packages of assistance that were incomplete, inadequate or subject to change. Submitters spoke of deficiency: of beds, staff, specialist care, timely assessments, quick intervention, rehab services, kindness, culturally appropriate care, communication, an integrated care continuum, funding, referral options, and crisis response. In regional New Zealand, people experienced added burdens of distance, limited specialist care and maintaining privacy.

In rural New Zealand, people find it difficult to find the services that they need with any sense of anonymity. (Service provider)

We heard about general difficulties accessing detox, rehab, and other alcohol and other drug services due to long waitlists, a lack of culturally appropriate options and limited service locations. This was exacerbated by complexities of addiction and mental health challenges, fear of accessing services due to repercussions, and under-resourcing. People talked of being told to ‘keep using’ while they sat on waiting lists.

2.10.2 Limited options

Many people referred to over-medicalisation or, simply, medicalisation of mental health responses as inappropriate, inconsistent with holistic world views (particularly Te Ao Māori and Pacific world views), and dismissive of the broad array of social determinants of mental distress. These social determinants include trauma, inequity, early life conditions, discrimination, education, employment, housing, financial stress, violence, social isolation, and bullying. Pacific and Māori submissions spoke of the need for culturally embedded solutions for their communities, given the inequitable distribution of social determinants and high rate of mental health challenges. People also sought early life-course intervention solutions that placed children and their whānau and extended whānau at the centre.

There was strong discontent across submissions about the ease with which help-seeking was often met with only a prescription, instead of a breadth of accessible, community-based, timely, holistic options. People sought options and choice: more talk-based therapies, peer-led services, trauma-informed therapy, addiction services that are not wait-listed, early intervention services, maternal mental health services, Kaupapa Māori services, Pacific-led solutions, wrap-around services, and an emergency bed for the night.

I stated that [my son] was not safe overnight and that I had real concerns unless someone intervened. The hospital called the Crisis team … they were busy and unavailable to come … the doctor told us … that [my son] should be given a zopiclone sleeping pill by the hospital and that we should drive him over to [town] first thing in the morning … My daughter and I took this advice as having full weight and medical authority. So we accepted. I wish more than anything that we had refused … While we were all still asleep, in the early hours of the morning, [my son] went to the garage and hung himself. So now we have no options … This was a preventable death. (Bereaved family member)

Services for those bereaved by suicide were also seen as critical to suicide prevention. Bereaved whānau, family and friends called for effective and culturally relevant postvention supports as a priority, with access, options and consistency across New Zealand. They also called for culturally relevant and age-appropriate postvention support to decrease the trauma and long-term consequences of the loss of their loved one.

Some people reported the added difficulties (and limited options) when presenting with complex, chronic or multifaceted needs such as mental health challenges and eating disorders, addiction challenges, dementia, learning disabilities or neurodiversity. Families searching for help with their children were often frustrated by limited access, services and availability.

As treatment options in [New Zealand] are severely lacking I have had to take my child overseas to try to save her life. If we didn’t have the money to do that I am sure my daughter would have died. That is terrible ... (Family member of service user with anorexia)

For many, obtaining a diagnosis was complicated due to not ‘fitting neatly’ into a diagnostic category.

If you do not have an easy, clear or specific diagnosis it is hard to find experienced professionals willing to work within your difficulties. (Service user)

Submitters reported limited options for discharge back into the community, follow-up times, waitlists for further treatment and variability within current community services. For many people, exiting the system (or being exited from the system) was as distressing as having to fight for access.

2.10.3 Gaps in services

We heard of a large gap in mental health and addiction services for people with mild to moderate and moderate to severe needs. We were told there were insufficient services GPs could refer patients to for help such as health education, social support, respite care and employment support. DHB staff described a lack of ‘step-down’ services to help people recovering from being acutely unwell to re-establish a stable and meaningful life in the community. This need for a continuum of support and services was a constant concern among tāngata whaiora, families, members of the public, clinicians and NGOs.

The lack of available services, especially talk therapies, was blamed for much of the perceived ineffectiveness and inefficiency of the current system such as an over-reliance on medication, the exhausting struggle to meet criteria for specialist services and the difficulties of discharge planning. We also heard repeated concerns about the challenges for people in rural areas or smaller centres trying to access specialist services such as detox centres, respite care or treatment for eating disorders. Although people acknowledged that such services could not be available everywhere, they were concerned that DHBs do not appear to collaborate well on a regional or national basis to provide consistent coverage.

2.10.4 Navigating the system is hard

People spoke of the frustration of a mental health ‘system’ that is really multiple systems with complex boundaries to be negotiated between:

  • mental health services and addiction services
  • primary health care and secondary services
  • medical treatment and social support
  • mental health services and physical health services
  • mental health services and disability services.

People reported difficulties with boundaries between services even within the same DHB. They described negotiating the system as time-consuming and a cause of anxiety and uncertainty – a problem echoed by GPs and paediatricians. Submitters felt disempowered by unexplained delays, confusing and sometimes contradictory criteria to access services, difficulty in sustaining and adjusting packages of support over time, and uncertainty in moving between different levels of service and service providers.

Our mental health and addiction services are literally all over the place. So many times I have been confused by which service to contact, which service I am currently even engaged with and so many times when being referred somewhere I have heard “I’m not sure why they referred you to us”. (Service user)

We heard calls for much wider provision of navigator services, such as Whānau Ora, to assist in connecting with multiple agencies.

Whānau have voiced that they get confused with the amount of different people involved in their care and the number of cars up their driveway. (NGO provider of Kaupapa Māori services)

People noted the disconnect between mental health services and other sectors, such as housing, special education, Oranga Tamariki and corrections. They reported all sorts of practical difficulties, from scheduling appointments to reviewing medication to trying to coordinate with attempts to hold down a job. For prisoners with mental health and addiction challenges and their families, reintegration back into the community was described as an area of enormous stress and uncertainty.

2.10.5 Inconsistent, fragmented services and variable quality

People described how moving between regions or between different service-providers often leads to ‘falling between the cracks’ as the 20 DHBs apply different criteria and have different models of care. They asked for continuity and consistency of provision across DHB boundaries and for much greater care in planning and resourcing the transition between DHB and NGO services. Due to funding models, workforce and privacy limitations, and disconnected communications, services at many levels were unable to provide an integrated, continuum of care for many service users.

The amount of time … patience that is asked of parents in order to get through the mess of people to deal with is astounding … If all these agencies that are supposed to work together actually get to know what they are doing better and REALLY do work together, share their notes and cases with each other in one system, and ideally are all under the same umbrella or roof, things would be a lot less complicated and hopefully speed support up … (Family member of service user)

NGO providers attributed the problem in part to a contracting system that forced them to compete rather than collaborate. In their view, this discouraged collaboration in areas where it is particularly important such as discharge planning, suicide prevention and wellbeing promotion.

Submissions highlighted the interplay between positive mental health outcomes and broader sector-level integration across employment, income support, housing, justice, and education. Integration of physical, social and spiritual health was integral to healing for many submitters; so too was a sense of belonging to their culture and community. Having cultural agency was critical to both Māori and Pacific submitters. A high number of submissions addressing addiction also called for a cross-sectoral approach. People said that when they eventually got help, the quality of care and support was often variable, choices were limited and services did not meet their needs. We were told that there are no clear national service standards, and that some people felt brushed off by staff too stressed and overworked to truly listen to them.

Psychiatrist number four was time pressured and we didn’t click and he couldn’t quite figure me out, so he sectioned me. Because if you’re time pressured it’s ‘safer’ to section someone with chronic suicidality than to actually spend some time getting a better handle on their situation. (Service user)

A particular source of irritation was the lack of consistent record-keeping and information-sharing and having to repeat basic personal and clinical details to a series of providers, even within the same organisation.

My experience of visiting multiple service providers … Having to relate the same painful story over and over; being asked slight variations of the same question multiple times is humiliating and unhelpful. (Service user)

2.10.6 Shabby and depressing facilities

Frequent complaints were made about inadequate environments, reflecting the ‘poor cousin’ status of mental health and addiction within DHBs. A particular concern was the state of seclusion rooms, but people also described depressing inpatient facilities that were not fit for purpose and were poorly maintained, which hindered rather than helped recovery. People also expressed concern that, due to a lack of resources, community facilities are often shabby and unhealthy, with insecure tenure.

There were particular concerns over the use of police and prison remand cells to house people with severe depression, psychosis or withdrawal symptoms. They were described as entirely inappropriate for people in distress and not places of healing.

For someone unwell in crisis a police cell shouldn’t become a second-rate surrogate replacement for a hospital bed. (Family member)

2.10.7 Physical health problems are overlooked

Many people cited the fact that tāngata whaiora have much higher rates of a variety of conditions such as diabetes, cardiovascular disease, cancer and oral health problems and die prematurely. It was noted that the health system pays insufficient attention to the physical health of people presenting with mental health problems. People also raised ethical concerns about the use and management of anti-psychotic and anti-depressive medications with serious side-effects such as weight gain and the risk of premature death.

People asked for a concerted effort to monitor the physical health of people with mental health and addiction issues, so that their treatment enables them to be ‘equally well’. They cited the need to address factors such as sedentary institutional lifestyles, poor nutrition, smoking and lack of regular exercise and to ensure regular health checks or screening for cancers.

Physical health is a massive thing for me; eating healthy has doubled the way I’ve felt. Nearly no medication but eating and exercising well. I had trouble sleeping so [respite service has] a sleep clinic. … All about your wellbeing and holistic health. (Service user)

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