UNITED COMMUNITY ACTION NETWORK
Submission to Aotearoa New Zealand’s Mental Health and Addiction Inquiry
All names changed to protect identity in the stories unless stated
United Community Action Network (UCAN) grew as an advocacy voice for New Zealanders with poor access to health and mental health services. We are a coalition of community organizations and members, alongside health and social service providers and human rights organizations, such as NZNO, Child Poverty Action Group and Equality Network who see upfront on a daily basis the inequity perpetuated by our current system. We look forward to meeting with this Mental Health Inquiry panel to present our submission. We bring with us stories from our members, to reiterate the points we make in our submission, with their own voices and real life stories.
We are aware of PeerZone’s submission in partnership with Action Station, and give support to the recommendations made there. Many of our members have individually signed their support for this submission also.
- WHAT IS WORKING WELL?
All New Zealanders have mental health needs. A system “working well” is one where you see a community enabled to have all its members’ rights respected according not to the system’s budget capacity, its location boundaries or population scope – but according to each member’s individual needs. The vision we hold is for all people from Aotearoa New Zealand to live full lives and reach their potential. From one with diagnosed and chronic mental illness to one suffering the trauma of violence at home to one simply managing high stress at work; the rule of thumb must be this human rights framework for determining what’s working well.
A government showing leadership on recovering knowledge of the lived experience of the people of Aotearoa New Zealand with mental health issues and episodes caused either by the stress and disorder of other social conditions in their everyday lives, or because of an ongoing mental illness condition: This Inquiry is in fact a primary indicator that this government is attempting to ‘work well’ to right a languishing situation.
This Inquiry bring’s government’s response to the system and situation of mental health need back in accordance to Aotearoa New Zealand’s obligations to international human rights Conventions such as the United Nations Convention on the Rights of People with Disabilities (UNCRPD), the United Nations Convention on the Rights of Children (UNCRC) and the United Nations Declaration on the Rights of Indigenous People (UNDRIP). Government will also be in accordance with Te Tiriti o Waitangi if it partners effectively with Mana Whenua and communities on this Inquiry’s solutions, once they have been reached.
UCAN acknowledges the growth of civic society and its urgent and successful collaboration during the early phase of advocacy for this inquiry before the 2017 election. It is a bitter irony that this growth and vibrancy of action for people with mental illness and addiction has grown out of awareness of the diminishing accountability of government and local government for this population’s needs. We are impressed with the responsiveness of the new government to the key messages of civic society around this Inquiry, and note the Inquiry’s procedure, report and government’s further responsivity to its recommendations is what will be measured at next election.
Story A: Martin
All townships across New Zealand need to provide young people with recreational and work options that enable them to stay occupied and hopeful about their future.
For Martin, growing up in Carterton, this was not the case. Martin and his friends often felt like the only option was for him and his friends to borrow a parent’s car and drive into Wellington for any meaningful activity. Martin and his friends were all on the dole. One by one all Martin’s friends began to smoke tobacco, marijuana or synthetics, as well as drink heavily. A lack of occupational options meant lifestyles could easily spiral into addictive behavior.
But Martin soon realized his addiction to synthetics was messing with his brain; he began to have psychotic incidents when he smoked and he felt that he was hooked and needed support to get well.
Martin found help in Wellington through the Salvation Army. A social worker from there encouraged him to attend Narcotics Anonymous meetings, where all kinds of people could support one another through story-telling, empathy, and an application of the methods derived from the Alcoholics Anonymous 12 Step Programme. The social worker also supported him to see a doctor about his psychosis and put his trust in some medication, as well as apply for rooms in the city so that he could find work and start a new life. Luckily Martin found a room, and applied for the housing supplement with help from the social worker. Through Narcotics Anonymous, he found friends who also helped him to find work. Martin still struggles to overcome his addictions, and is aware he will have this personal battle for the rest of his life. But he has got out of Carterton, stopped having psychotic incidents, found a supportive network of friends he can relate to and who motivate him to stay well, and he has also found hope through a job and a new life living in the city.
What is working well for Martin?
- One on one social support when Martin looked for it, to help him navigate and give him confidence in his applications with other services he needed.
- Group social support that Martin can rely on to be there whenever he wants it, for the rest of his life, because overcoming addiction is something he knows he will battle with himself for all his life.
- A timely response from services that enabled Martin to access secure and affordable accommodation, a skill advocate who was able to navigate MSD processes, swift access to skilled Primary Care clinicians and community programmes that enhanced the wrap-around package of care
Story B: A new Mum
Having just had our first child last year, my partner and I have been reflecting on the things that helped us in those early months as new parents, because we know we were supported in really significant ways.
A significant factor was the ability to stay in hospital for several nights (without feeling like I should leave!). I had a c-section so I was advised to stay in hospital longer to recover properly from the surgery, it made all the difference to have the support of the amazing staff at Wellington Hospital over this time, especially with breastfeeding. Then having regular visits with my midwife in the early weeks and then Plunket was really helpful.
Another factor was access to paid parental leave. The benefits of paid parental leave to parent and child wellbeing are well known, but for me having the space without financial and work pressure to learn and grow into my new role as a mum was incredibly important to my wellbeing. My partner found having an employer who was flexible with hours really important, this enabled him to spend time at home at times that worked best for us. However this is a far from universal experience with many families in Aotearoa lacking the resources they need, bringing huge pressure and stress.
Above all, having a fantastic partner and support network of friends and family – I cannot say enough how important this was. Building community and connections is so integral to wellbeing. Having opportunities to connect with others, whether through people I met at my antenatal class or Plunket groups, or just meeting people at parks. Being home all day with a baby was lonely at times, so the ability to connect with others regularly was hugely important.
What worked well for me as a new Mum?
- The system was responsive to my needs and helped me to know and not stress about what was needed
- Processes were in place that supported a positive birth, with a focus on both the well being of me, my child and partner.
- Wrap around support was in place to support transition from hospital to home.
- Connection with others in the community helped to reduce loneliness and isolation.
- WHAT IS NOT WORKING WELL?
Without a Mental Health Commission in New Zealand and the inadequate funding for mental health and addictions across the spectrum of services from prevention to crisis intervention, there has been growing gaps between the burden of mental illness and addiction in Aotearoa New Zealand and our health system’s response. This response is inadequate and the inadequacy of the systemic response lies then in part to blame for increases in disability and death caused by mental illness and addiction, increased use of emergency services and even misdiagnosis and inappropriate treatment options being provided. We call not only for the return of a Mental Health Commissioner, but deem it necessary for a second Commissioner to overview Child, Adolescent and Youth mental health.
We believe the latest health strategy is not fit for purpose in this regard. There is but a passing mention of mental health issues. But mental health is a fundamental issue for a health system to consider; its prevention and response affects the lives of all peoples of Aotearoa New Zealand.
UCAN members have a strong aversion to the term “consumers” in any government report or strategy. We want to be seen by our government firstly as citizens. It is as citizens that we are entitled to mental health support and service. UCAN members also feel strongly that the term “resilience” is a catch-phrase adopted by public servants in Wellington who have no real experience of it in the context of everyday survival, or even in the context of navigating government services and agencies. The term is often used patronisingly as something we, as “consumers”, need to have built into us by services. This is a gross misunderstanding of us and the term: resilient is what we ARE – what anyone by necessity must become – in response to poor service, lack of empathy and support, and the cruel experiences in our lives.
There is little recognition of the combined impact of mental health and other chronic diseases on the individual. Access barriers apply to both, which means they are compounded for New Zealanders experiencing them both. People with mental illness are dying early from non-mental health conditions, while people with chronic illnesses are developing mental health concerns related to their inadequate access to our system’s care for that condition. There are significant divides between the delivery of physical health care and the care delivered for those experiencing mental distress. This silo approach to delivering health-care means that gaps are inherent in the system. These gaps are being reported more often in the failure to deliver care in scenarios concerning children, adolescent and young people. These failures reinforce poor health outcomes across the lifespan, resulting in early loss of life for many, a finite health budget focusing on the long-term management of preventable illnesses and the broader social consequences of the exacerbation of inequality-based illnesses impacting the wider social environment. This last point includes increasing homelessness and precarious living, lack of access to meaningful employment or precarious employment options, high incarceration rates and poor experiences of the education system to name a few. These contexts are disproportionately experienced by Māori and Pasifika whanau.
This combined nature of the lived experience for people with more than one issue, disability, addiction or illness, is just the tip of an iceberg in terms of the oversight in our current health strategy: It fails to account adequately for the social determinants of health inequity. Cost barriers and the lack of culturally appropriate services disable many New Zealanders from accessing mental health services, and also reflect environmental and economic conditions driving their greater service need.
UCAN has experiential authority on the outcome of all this systemic failure: Our network grew out of the shared experiences of members of the deprivation of our houses, the loss of good and helpful services, the difficulty for many of us accessing primary and secondary care, and the increasing costs of our medication, or even adequate and timely prescription. For those developing the strategies and writing the plans these conditions might be statistical irregularities or trends, but for us, this is what we’ve seen happening with more and more frequency in our community. Many of our members are angry and desperate when a service they came to and relied upon is lost and the reason given has to do with the “funding model”. For these members of UCAN, a better question to have asked in this Inquiry is “what did work well that was taken away without good reason?”
Who has measured the impact of the loss of these services? Who is accountable?
Story C: Charlie
It should be easy for people with disabilities to find housing that suits their specific needs, or if they don’t, their owners – or the government – should have the readiness and fast support to adapt and renovate where necessary. For Charlie, living with mild cerebral palsy, the government refused to help him when at 21 he wanted to move away from his grandmother’s home. Charlie’s housing needs were linked to the fact that his grandmother (with other members of his family throughout his life) abused him continually. Government services claimed that enough assistance had been given to his family to accommodate Charlie well.
Due to his condition, Charlie found it difficult to communicate his situation to anyone that would help, and the stress of his living situation started to affect his physical and mental health in a psychosomatic way: distress always aggravated Charlie’s condition, making his joints stiffen and his movements more uncontrollable. The lack of control Charlie had over his housing situation was reflected in the lack of Charlie’s physical control over his body and voice. A mild cerebral palsy escalated to become severe and Charlie could find no way of stopping this escalation from happening.
Charlie entered the housing market independently, resorting desperately to finding on his own a better place to live. But he found it extremely difficult to compete with other rent-applicants who didn’t have particular access needs and issues with their communication and mobility. Often the stress of meeting and seeing new people during the application process flared his condition to an unbearable degree, and discussing access at all left Charlie rejected by potential flatmates and landlords who were not willing to share Charlie’s “burden”, among plenty of other applicants more able and considered “less trouble”. Charlie’s choices were reduced to the worst rooms no one else would take, but he was prepared to suffer an option as bad as this if only to escape the nightmare of living ever again with his abusive family.
He now lives in a dark and uninsulated room, thanks to kind open-minded flat mates who also provide some assistance in terms of shopping for food. But Charlie’s new landlord will not do anything to ease his access up and down stairs, which leaves him sometimes isolated from the living room which is warm and where the others gather.
What isn’t working well for Charlie?
- Impersonal treatment of staff and conditions and thresholds of need set by government agencies that overrule Charlie’s particular situation and regard him as someone already sufficiently housed and assisted, when in fact his housing situation caused him distress and a considerable lack of safety.
- The lack of housing across New Zealand creating extreme circumstances of competition among people seeking homes, leaving people with disabilities at an extreme competitive disadvantage.
Story D: A clinician’s perspective – Stuart
When living with a mental illness and/or addition, a person’s ability to cope is enhanced in a space that provides activity, warmth, food and support from others with shared experiences.
Stuart is a nurse who would visit a peer-support drop-in centre in a Southern Wellington suburb. The serviced had been open for about 20 years and was a stable environment in the community. The Centre was established to be run by people who had experienced mental illness in order to support others who wanted peer-support in a non-clinical, non-judgemental space. Local businesses would often drop off food that would be distributed among those who attended, of which would often be assembled into a warm healthy meal for all. In the early days the Centres activities gained positive international recognition as a groundbreaking peer-support model.
Over the years of visits Stuart got to know many of the people who used the service. He was able to help negotiate access to health providers, first gaining trust then organising appointments for unmet physical health needs. He was also able to offer health promotion clinics such as free Flu vaccinations and cooking healthy meals on a budget. Stuart knew this place was essential for helping to repair and rebuild the trust clients had lost from previous negative experiences of mental health services.
The centre was funded from the local DHB but became more precipitous as the DHB need to centralise funding to ‘core’ services. Ultimately the service closed down. No alternative option was provided.
To this day Stuart still sees many of the people who used to attend this centre, only they are now on the cold ground of central city streets pleading with locals for coins, often for food. He has seen significant deterioration of their physical and mental well-being that he had helped them build during their time relying on the centre. The streets are cold, illicit drugs are a lot more accessible and options of healthy activity, company or outcome seem invisible. This is the harsh reality and outcome from funding rationalisation.
What’s not working for Stuart?
- Warm, dry, and dignified options of activity have disappeared. Though these were not seen as core services they provided significant gains to people who may have been engaged with mental health and addictions services, or needing these services but unable to find an acceptable access point.
- There is an increasing incidence of those with high-priority needs not receiving the medical interventions that are their right.
- While the centre was not without its significant challenges it is apparent that for those that made use of it, they were able to access timely and affordable (and free) clinical interventions if required/accepted. There are no environments like this anymore. It is cruel and insensitive where service like this is now being denied, to call those it would serve ‘Hard to reach”. For Stuart, it is his service that has become hard to reach: his clients’ needs never changed.
- WHAT COULD BE DONE BETTER?
New Zealand needs an aspirational health strategy that resources mental health services, health promotion and public health advocacy not merely adequately, but sustainably, i.e. With a view to the sustainable development of communities everywhere, and the reduction over time of disparities in health outcomes for those with mental illness and chronic illness, disability and addiction.
The previous Government promoted an “Integrated” model of health care delivery. This sounds sensible, but while we have Government departments that are fragmented, and at times contradictory to either department’s policy, genuine integration of care is fanciful. Health requires the input of Education, Housing, Employment, Justice, Social Development, among the raft of governmental departments. New Zealand needs an Integrated Governmental approach to addressing this crisis. The funding to Primary Care has had no increase for the last decade, however, and Secondary and Crisis services have had to employ tighter gate-keeping to manage risk and load, and the supportive community-based services have had funding discontinued meaning a major loss of daily options available to people .
Services need to be faster, consistent and subsidised efficiently to ensure equity.
- Faster: DHB mental health services must increase the speed of their responsiveness, from Primary care to crisis intervention.
- Consistent: This means they must also have capacity and capability to cover all crises of a mental health nature.
- Subsidised: All children (under 18), and households with low incomes need free access to services. We need strategies in place to subsidize the hidden cost barriers such as transportation, prescriptions and work disruption.
- Prevention: Resources must be allocated for services providing care to child, adolescent and young people. Swift identification and access to therapeutic options is essential to prevent conditions becoming chronic.
- Integrated: The Ministry of Health needs to have Housing on it’s side, alongside Education, MSD and the other governmental departments. The siloed approach to health care is ineffective, expensive and harmful.
Aotearoa New Zealand needs to return to a respite care model that sees value in community-based care developed by and with the communities being served. People who utilise mental health services tell UCAN they are sick of being treated like a problem of society that services will diagnose and treat ‘away’. The mental health of people of Aotearoa New Zealand need to be regarded across the health system as one of its own primary performance indicators, and to monitor this aspect of its performance will take better engagement and ongoing consultation with users of mental health services. It is time for mental health strategy to be determined in partnership with people living with mental health conditions, with particular regard for compounded conditions, socio-demographic conditions as well as the cultural diversity of our population needing mental health services.
Our members feel passionately that the reason the resources are not there to invest in an adequate amount of services for our needs is because no priority has been given to even establish proper understanding of the diversity of this demand. If Aotearoa New Zealand is going to serve us better, it needs to find the money and resource to identify and map clearly the nation’s ongoing and seasonal demands, to continually inform the investment in evidence-based programmes to equitably meet those demands. Furthermore, many members remain less than confident that there will ever be enough investment to eradicate the competition among the varying services for contract funding. The competitive model of funding allocation needs to become a model of the past. We need new visions and approaches.
Another aspect many of our members feels passionately about is that people with mental health needs should never be made to feel as if they’re criminals. So often, only because people are being treated once they are in crisis, some people are left in the care of the Police, who try as they might to serve, are equipped to deal with crime, not people who are having a mental crisis. These citizens are left in prison cells, and the stigma of those surroundings affect many officers’ level of respect. It shouldn’t be the police who respond, unless police are trained properly to treat us with dignity, and equipped to give us non-criminal spaces to be served in when we are in crisis.
Story E: James
People who have suffered violation and trauma as children need lifelong support from an empathetic system, to help them build trust and hope – basic social skills that were not established early through loving connections with family.
James is 30 years old now, but he was sexually abused at the age of 4. His trauma meant he failed at school. James hung out with the wrong crowd and got involved in drugs and then was sexually abused again by a family friend at the age of 17.
Instead of empathy and support to uncover the cause and deal with his past, James was merely put on the methadone program. He is now off that, but for the last 20 years he has been in and out of jail for minor crimes and has been under CADS to help address his drug use.
He has been suicidal for the last 10 years and has trouble sleeping. Like many others, James self-medicates because of the mental pain he suffers from his terrible memories and sense of loss. When he has tried to get help for his suffering mental state, he always gets told that he needs to get straight before he can get help. He is always written off as a drug seeker when he goes to ask for help.
It took CADS and his doctor a year to organise an appointment for James to see a psychologist. He was finally diagnosed with extreme PTSD, but a diagnosis does not make him able to be a functional member of society. James has been unable to get the help he needs.
What could be done better for James?
- Mental Health services and Addiction services need to work in tandem, without any philosophical and abstract disconnection of their treatments that discriminate against people like James, deny his rights and stall his access to help
- If James approaches a service saying he is suicidal, or even saying he can’t sleep (an indicator of depression), an appropriate psychological assessment and therapeutic plan should be worked on with James without any delay
- Across Aotearoa New Zealand, more adequate Trauma-related options need to become available for people like James to know about and access
- A significantly negative consequence for James has been the unhelpful entanglement with the courts and Jail services. Early interventions and options were not offered in a way that connected with James, and only compounded his lack of trust for others who were supposed to help him
- WHAT SORT OF SOCIETY WOULD BE BEST FOR THE MENTAL HEALTH OF ALL OUR PEOPLE?
It is the right of all people of Aotearoa New Zealand to have equal access to health services, work and education opportunities. It is the right of us all to have accommodation and an environment that does not hinder our health or alienate us from our community. With this vision, UCAN developed a Charter for Health that holds to a human rights framework. UCAN’s focus is to reduce the denial of rights for people living on low incomes, particularly those suffering mental illness, chronic illness or disabilities. The Charter was composed and design with critical input from Professor Don Matheson.
In the lead up to the 2017 election the UCAN Charter for Health was publicly supported and endorsed by the Labour Party, the Green Party and NZ First.
We believe the following are the priority solutions for better mental health outcomes in Aotearoa New Zealand:
- Free primary health care available in every community:
One million people have an unmet need for primary health care in Aotearoa New Zealand. The cost of care is the biggest barrier, including the cost of drugs. There is low availability of primary health care services, particularly in deprived areas, and the barriers are bigger for those with chronic illness and disability. The NZ Doctor magazine reported in 2017 the 1 in 4 GP practice will close their books to new enrollments every year in order to manage the overwhelming need presenting. A primary health care approach with a focus on equity and social justice is required across the health system.
- Everyone’s right to a Living Wage:
UCAN supports the Living Wage movement. The gap between the rich and the poor is growing in New Zealand and this is bad for all our health. More and more New Zealanders in work don’t get paid enough to meet their needs, to eat healthy food, and live dignified and healthy lives. Many are left with no time for leisure or opportunity to participate in society. Poverty damages the health of many beneficiaries, and especially for the children living with poverty. Research, such as the UK authored The Spirit level, saliently states that the worse the inequalities are within that society, the worse off everybody will be in terms of mental health, addictions and wellbeing.
- Everyone’s right to a warm, dry and safe home:
UCAN supports affordable, healthy housing. Currently New Zealand is failing to adequately house our children and other high priority groups. They are exposed to housing conditions that damage their health and are not fit to live in. People with severe mental illness are often living in substandard temporary housing with insecure tenure. Just like Charlie, they have been betrayed by a failed market model for housing provision.
- Everyone’s right to take part in our society:
UCAN wants to see more community centers and drop-in centers with free internet connectivity and public transport facility. Just like Martin, more and more groups of New Zealanders are denied their right to actively take part in our society, either through unemployment, or through working longer and longer hours and leaving less time for involvement and leisure time. We used to house people with severe mental illness in asylums. This role was shifted to the community without the financial, technological and human capital provided to adequately resource this. The social contract for those in need has thereby been broken, and it needs to be restored.
- Everyone’s right to a safe environment:
Healthy affordable food, renewable energy, and a marketplace not over-run with fast-food, gambling and liquor outlets, are conditions of life increasingly considered idealistic to imagine. Our government has failed to regulate commerce and industry to protect our citizens from being simply as consumers. Consequently our consumption patterns have stopped being conducive to good physical and mental health. UCAN supports incentives and subsidies for sustainable businesses and higher retailer regulations for rogue industries such as for sugary drinks, alcohol and franchised food outlets. We also support policy that protects our water, air, green spaces and the wider environment.
- Everyone’s rights to education.
People with mental illness and disability are at greatest risk of limited options for education. This affects their long term capability and productivity and puts them at risk of isolation from their community. This in turn affects their mental health. UCAN supports accessible education opportunities for all through greater transportation and community-based programs. We support the return of funding for adult education programmes, support groups for people in recovery like Martin, and strength-based learning aligned to community and cultural needs.
UCAN would like to see respite and recovery projects design in conjunction with communities in the inspiring way that the MadLove project was undertaken in the United Kingdom: http://www.madlove.org.uk
This Charter places maximum emphasis and prioritisation on prevention: across all sectors of society preventing crisis and short-circuiting recovery, creating options and hope through social connection and generating jobs and capital – these are the conditions that assure a society becomes and stays well. UCAN’s Charter calls for a society that assumes every individual can contribute. The challenge remains to build the scaffolding and safety nets that enable that contribution to be ongoing and manageable across every citizen’s lifespan. The UCAN Charter calls for the redressing of terrible outcomes arisen from the failure of past governments, and for this redress to acknowledge government’s responsibility to all its citizens in alignment with Te tiriti o Waitangi.
Story F: Debbie (Direct quote added in full at request of author)
“My name is Debbie. I am 53 years old. Between the age of 9 to 13 years old I was sexually abused by my stepfather. When I was 13 I gave birth to a baby boy my stepfather was the father. When I gave birth my baby was adopted.
After I had my baby my mother had me admitted to Carrington Psychiatric Hospital saying that I was unwell. She also contacted the education department asking for me to get an exemption from school. While in hospital I was given 22 sessions of electric shock treatment.
I ran away when I was sent home.
For many years I tried to get help for my mental state of mind. I saw many doctors. I moved to Wellington and due to my situation I ended up living on the street. After being enrolled in NUHS I had a nurse Kieran who could see what I was going through. One day I decided to take my own life as I could not deal with the mental pain anymore. Luckily I met Paul French who works at NUHS who is a psychiatrist. I went to Ashburn clinic in Dunedin. I was there for 18 months. Ashburn clinic is the only clinic in the southern hemisphere. It helps people like myself who due to the abuse we encountered as children were unable to function. We need to ensure that these services are funded so people can receive the help and support they need.”
What sort of society do we need to support Debbie?
- A society that happily prioritises through its inland revenue a committed and accessible model of multi-disciplinary Primary Health Care, that prioritises establishing wrap-around support across the lifespan to support ongoing recovery and wellbeing.
- Ironically, one is seen as lucky to gain access to clinics such as Ashburn. The current lack of access to residential Therapeutic facilities deny treatment to many. Aotearoa New Zealand needs to develop an extended network of therapeutic option to support people’s recovery.
- ANYTHING ELSE
UCAN members supported PeerZone’s development of its Mental Health Report. We also gained support for our demands from various members of this newly elected government. We continue to correspond with the Minister of Health to support his leadership and delivery of a human rights framework for health strategy going forward.
We believe the deliverance of effective processes – such as this Inquiry itself – come as a result of coordinated advocacy efforts by coalitions such as ours. Yet our work is completely administered and led by volunteers, many of whom face the challenges of mental illness or chronic illness. We hope the panel will highlight this anomaly in Aotearoa New Zealand’s economy and also call for a restoration of value for and investment in coalition-based advocacy.