There is still much to be done to improve awareness, understanding, and support for people with ADHD in New Zealand. I’m hoping this will serve as a small lightly humorous blog like resource to “Life with ADHD in New Zealand”. I share some studies and articles I’ve read/reviewed and fits the peer lived experience narrative of what it’s like living with ADHD in New Zealand currently to aid in this conversation. I hope the reader finds this informative and hilarious. Because with the state of things, all we can do is laugh.
Why Under diagnosis is a problem is New Zealand:
Highlighted by the following study. People who continue to go through life undiagnosed and or untreated live a lesser quality of life over all because of the lack of access to information, support and treatment from early as childhood.
Unheard voices: Adults with ADHD in Aotearoa New Zealand
“However, most experiences revealed a commonality centred around feelings of frustration, rejection, shame, and the lack of personal agency. These experiences and normative social discourses prompted participants to actively police and mask their behaviours and ADHD characteristics. Participants reported lacking crucial knowledge to navigate life internally and externally with ADHD due to the absence of relevant guidance and support. The impact of these internal and external difficulties was compounded by the ableism they faced related to their ADHD. Early ADHD diagnosis followed by comprehensive ADHD information and support within the broader community, i.e. educators and health professionals, would have facilitated more positive lived experiences according to participants. This study indicates that early information, treatment, and support could mitigate the unseen personal toll associated with having ADHD.”
https://researchcommons.waikato.ac.nz/handle/10289/14704
Collective societal attitudes about mental health still has an incredible stigma here, the high prevalence of self medication and drinking being one of the elephants in the room of most New Zealand households. It would be hard to determine exactly how many people in New Zealand are self medicating with Alcohol or other methods of substance abuse. But again given the collective attitude towards seeking help, especially for cis men of varying demographics in New Zealand, even though improved somewhat, is still a large portion of the statistics for abusing substances.
There are some studies showing how substance abuse is impacting the attention capacity of our youths:
“The aim of this study was to investigate characteristics that might enhance retention among adolescents attending outpatient alcohol and drug group therapy within a youth mental health setting. An important goal was to provide information for nurses and other clinicians who work with adolescents with coexisting substance use and mental health disorders. A retrospective file audit reviewed the files of 64 adolescents who attended a weekly alcohol and drug group between 2002 and 2004. Five characteristics were shown to have a significant impact on enhancing participant group retention. These were Māori and Pacific Island ethnicity, past or current legal charges, youth drug court (YDC) involvement, having a diagnosis of cannabis dependence, and a diagnosis of conduct disorder. Logistic regression found that YDC involvement on its own significantly predicted treatment retention. In an area of limited research, the findings from this study expand the literature on enhancing treatment retention for a vulnerable and hard-to-engage adolescent group with complex treatment needs, and highlight the need for further investigation of the potential role of the YDC. From a practice perspective, the findings support group therapy interventions as a cost-effective treatment modality for assisting adolescents with coexisting substance use and mental health issues, including those with conduct disorder and YDC involvement.”
https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1447-0349.2010.00693.x
With all that being said, it goes further a field, literally, where there is research (unfunded thankfully) which states, just more green grass deters a child from catching the “ADHD”.
Association between exposure to the natural environment, rurality, and attention-deficit hyperactivity disorder in children in New Zealand: a linkage study
“Rurality and increased minimum greenness were strongly and independently associated with a reduced risk of ADHD. Increasing a child’s minimum lifetime greenness exposure, as opposed to maximum or mean exposure, might provide the greatest increment of protection against the disorder.”
https://pubmed.ncbi.nlm.nih.gov/31128768/
*Sigh* We will get there my friends.
What about the understanding of ADHD in Maori or Minority communities?
Well there hasn’t been many studies I could find that really explains what it’s like to be a minority or even to be Maori and diagnosed with ADHD, a few personal anecdotes which is amazing to see the outreach of familiar faces and shared stories now online. But somehow it still lacks immensely in studies.
One big update is some changes or updates rather to language, a free resource launched here in New Zealand called Te Reo Hapai is available now. It is essentially “A Māori language glossary for use in the mental health, addiction and disability sectors”
This itself really is a huge leap as one it’s promoting Maori language. It opens an accessibility avenue to those who speak Maori who are wanting to adopt and still practice Maori traditions alongside their mental health journey.
They do care about our teeth though!
From the abstract of: Is Attention-Deficit Hyperactivity Disorder a Risk Factor for Dental Caries?: A Case-Control Study
“Experience in practice has suggested that children with attention-deficit hyperactivity disorder (ADHD) tend to have higher numbers of diseased, missing and filled teeth (DMFT score) than children without the condition.”
“The purpose of the study was to assess whether having ADHD was associated with higher odds of having high caries experience. Questionnaires were returned for a total of 128 case-control pairs. Conditional logistical regression analysis showed that, after controlling for fluoride history, medical problems, diet, and self-reported oral hygiene, children with ADHD had nearly 12 times the odds of having a high DMFT score than children who did not have ADHD (OR = 11.98; 95% CI 1.13, 91.81). No other factors were significant predictors. Dental practitioners and parents should consider ADHD to be a condition that may affect children’s dental caries experience.”
https://karger.com/cre/article-abstract/38/1/29/79241/Is-Attention-Deficit-Hyperactivity-Disorder-a-Risk?redirectedFrom=fulltext
Studies have heated up for children though. A very interesting cross cultural study about classroom interventions for Children with ADHD in NZ and USA. Given are large cultural difference in education systems and grading it’s interesting the read that it wasn’t as effective to use BIRS here.
Teacher perceptions of classroom interventions for children with ADHD: A cross-cultural comparison of teachers in the United States and New Zealand.
“This investigation compared United States and New Zealand teachers’ perceptions of classroom interventions for attention deficit hyperactivity disorder (ADHD). Participants read one of six vignettes describing a child with symptoms representative of ADHD. The number and type of symptoms were consistent across all vignettes. Next, teachers read a description of the daily report card, response cost technique, classroom lottery, and medication interventions and rated their acceptability using the Behavioral Intervention Rating Scale (BIRS; Elliott & Von Brock Treuting, 1991). Cross-cultural differences were observed for both behavioral and pharmacological interventions based upon teacher nationality. Teachers in the U.S. perceived both types of interventions as more acceptable, effective, and to have more timely effects than teachers in N.Z”
https://psycnet.apa.org/record/2006-08479-003
A further deep dive on to the subject revealed an on going conversation about this over a decade.
Are Teachers’ Beliefs Related to Their Preferences for ADHD Interventions? Comparing Teachers in the United States and New Zealand
“Differences were observed for ADHD interventions across samples based upon pupil control orientations.”
I’m glad we are becoming more aware how intersectional this all is. But moving on.
What is happening with medication and diagnosis access? Well it’s all the media likes to focus on, and a lot of it unfortunately is mostly written for people living without ADHD by people without ADHD.
The health system’s attention deficit when it comes to ADHD
“From struggling kids to out-of-control teens and desperate adults, New Zealand’s ADHD community is in crisis. Why is it so hard for them to get help that some are resorting to TikTok for medical advice?“”
“Those with ADHD struggle to focus and can be hyperactive and impulsive. Yet while it is one of the most common disorders affecting children, getting a diagnosis and treatment for ADHD is often described as prolonged and traumatic.
It’s even harder for adults, Bull says. Over 80 percent of adults with ADHD report struggling to get help, according to a new survey released today by the organisation.
“Out of 455 respondents, 60 percent believe diagnosis takes too long, or are still waiting for one, and roughly a third give up trying to get any help at all,” Bull says.
Most wait more than six months to be assessed by their DHB, if that service is provided at all, with some waiting more than a year. More than 70 percent end up going private, the survey found.
“It shows the ADHD community is in a state of crisis,” Bull says.
Going private is the only option in most parts of the country, as most DHBs do not see adult ADHD patients at all.”
https://www.rnz.co.nz/news/in-depth/457283/the-health-system-s-attention-deficit-when-it-comes-to-adhd
The sub headline says it all really. New Zealanders have turned to the internet for support at the lack of access and support available here (It’s also why I do what I do because some one has to do it! because I too cannot get support).
Other headlines from this year: “Mental health: Rotorua woman’s costly battle to get an ADHD diagnosis”
“ADHD New Zealand chief executive Suzanne Cookson said adults not being able to get diagnosed with ADHD through the public system was “a big issue”. The average cost of diagnosis privately was around $1600, but this varied on location, she said.”
https://www.nzherald.co.nz/bay-of-plenty-times/news/mental-health-rotorua-womans-costly-battle-to-get-an-adhd-diagnosis/RJMXWJWGIFHK5GF3QMM6DRQ5PI/
Adults with ADHD wait months for treatment as number of diagnoses balloons
“The average is about $800 to $1000 to get privately diagnosed, and I have heard cases of over $2000.” He said for someone in the South Island, it would be quicker and cheaper to fly to Sydney for a diagnosis.”
https://www.stuff.co.nz/national/health/300577197/adults-with-adhd-wait-months-for-treatment-as-number-of-diagnoses-balloons
Is there any hope in the medication front?
Well in some small progress. We can now get a script for up to 3 months. However, we only get funded for 1. This funding is basically a tax write off by the government making the medication more affordable.
Pharmac amends funding rules on dispensing of ADHD medicines
“from 1 June 2023, to align funding rules for ADHD treatments with law changes that enable controlled drugs to be prescribed for a maximum of three-months supply when using the New Zealand Electronic Prescription Service“
“Regulatory changes recently came into effect that mean people will now be able to be prescribed up to three months of the ADHD treatments, methylphenidate and dexamphetamine if the prescription is electronic,” says Pharmac’s Director of Operations Lisa Williams. “The legislation still requires the medicines to be dispensed monthly; however, with a three-month electronic prescription instead of a one-month prescription as it was before, people will only need to pay one prescription co-payment for three-months supply of their medicine.”
Not to undermine what it took for this to happen. This was a very long time coming and still not really good enough, but it’s something I guess…
Jenn has ADHD 