Across the world, the diagnosis of ADHD continues to evoke strong reactions from professionals and the general public (Smith, 2017). Many researchers and advocates have argued that ADHD is either underdiagnosed (e.g. Rucklidge et al., 2006) or over diagnosed (Kazda et al., 2021). Rates of diagnosis vary significantly between countries, which has been attributed particularly to cultural acceptance of ADHD and the availability of publicly funded diagnostic services (Asherson et al., 2012). International estimates typically suggest that between 5% and 8% of children and adolescents would meet the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) criteria for ADHD, with the New Zealand (NZ) Health Survey suggesting around 1.5%–3% of children aged between 2 and 14 years have an established diagnosis in this country (Ministry of Health, 2023).

Whether you believe that ADHD is over diagnosed or underdiagnosed, almost all of us would agree that a diagnosis should only be considered following a comprehensive assessment by an appropriately trained person, which considers the person’s history, environment, social context, cultural background and physical health (e.g. Australian ADHD Professionals Association, 2022). However, this is far from a given in NZ, with many individuals struggling to access good quality diagnostic services.

Significant Barriers Exist for New Zealanders to Access Appropriate Assessment and Treatment

ADHD practice guidelines recommend that assessment is undertaken by professionals with training and experience in diagnosis of developmental and mental health issues, most typically psychologists, psychiatrists or paediatricians (Australian ADHD Professionals Association, 2022; National Institute for Health Care and Care Excellence, 2019). The shortages of psychologists and psychiatrists in NZ have been well documented in recent years (e.g. Association of Salaried Medical Specialists, 2022; Rucklidge et al., 2018), which severely restricts consumers’ access to appropriate assessment and treatment.

Access to pharmacological treatments such as methylphenidate is severely restricted in NZ, requiring a psychiatrist, or paediatrician in the case of a child, to initiate a ‘special authority’ to allow the person’s general practitioner (GP) to prescribe the medication (Babar et al., 2012). This means that a diagnosis by a clinical psychologist does not guarantee a person’s access to pharmacological treatment; to do so, they will also need to meet with a paediatrician or psychiatrist. The ‘special authority’ is time limited, requiring the person with ADHD to find a psychiatrist (or paediatrician) to reissue it every 2 years (Ministry of Health, 2001). Furthermore, prescribers have traditionally only been able to issue one months’ supply of medication, requiring the person with ADHD to seek a repeat prescription and collection (along with the associated charges) every four weeks. To put this in context, these restrictions are far in excess of those in place for most other medications; for example, no ‘special authority’ is currently required for prescription medications such as tramadol or oxycodone, which are known to have significant side effects and to be extremely addictive (Blendon & Benson, 2018).

Beyond medication, very few Kiwis will have access to evidence-based treatment, with specialist psychological treatments typically only provided by a handful of private psychologists. This stands in contrast to recommendations from the National Institute of Health and Care Excellence and the Australian ADHD Professionals Association (AADPA), which consider behavioural parenting programmes and cognitive-behavioural interventions (for older children and adults) to be ‘first line’ treatments for ADHD, and particularly effective in helping people with other ‘co-morbid’ issues.

Surveys conducted by ADHD NZ in 2021 and 2022 (Bull, 2022) suggested that 90% of parents reported significant barriers to gaining help for their children, 80% of adults experienced similar barriers in accessing support for themselves and 30% of adults and 25% of parents reported waiting over a year for assessment. In addition, most publicly funded services offer limited or no access to assessment, and roughly half of adult respondents paid privately for assessment at an average cost of $1400 (Bull, 2022). Research suggests that Māori children, particularly those from poorer socioeconomic backgrounds, are more likely to show behaviour consistent with an ADHD diagnosis but are far less likely to receive access to treatment (Cargo et al., 2022). Despite the clear issues faced by people with ADHD and neurodiverse communities in general, there has been very little consideration of these groups in (mental) health service design and policy, clearly discriminating against neurodiverse groups (see New Zealand College of Clinical Psychologists, 2022).

“Getting my special authority number renewed was a nightmare - I went without medication for a while due to the medical practice not following up correctly, then prescribing me the incorrect meds…It severely affected my parenting and functioning yet was shrugged off as being trivial /non-life threatening.”

Quote from an adult with ADHD, taken from Bull (2022)

User Groups, Service Providers, Policymakers, MPs and Clinicians are Working Together to Bring About Change

In August 2022, a parliamentary hui (meeting) brought together representatives of ADHD NZ, the NZ College of Clinical Psychologists (NZCCP), the Royal Australian and NZ College of Psychiatrists (RANZCP), Royal NZ College of General Practitioners (RNZCGP), Nurse Practitioners NZ (NPNZ), Pharmac, NZ Police, the Ministry of Health and Te Whatu Ora, as well as practitioners from primary and secondary care services. The meeting was attended by Chloe Swarbrick, Green Party MP, who is a person with lived experience of ADHD. The then Minister of Health, Hon. Andrew Little, also met with the rōpū (group). The aim of the first hui was to discuss issues facing the ADHD community, identify possible solutions and agree on ways of continuing to work together. Subsequently, this has been expanded to include representatives from Te Aka Whai Ora, the Department of Corrections, and the Education and Social Development Ministries.

The rōpū highlighted a number of significant issues for New Zealanders with ADHD and their families, including difficulty accessing assessments and support, a lack of local data and research, outdated views of ADHD among healthcare professionals, challenges in accessing medication and psychological care, complex and siloed support systems, stigma and misinformation around ADHD, the significant consequences of a person receiving a late diagnosis, the lack of individually-tailored support and the particular absence of the voices of Māori or those with lived experience in service design. The rōpū identified a number of areas in which services required redesign and development, and agreed on six priority action areas for what has come to be called the ‘Aroreretini’ (a reo Māori term for ADHD, meaning ‘attention goes to many things’) programme.

  1. Improving access to ADHD medicines by addressing issues with special authority renewal and considering new medicines not currently available in NZ.

  2. Increasing the understanding of ADHD in NZ through better data and research.

  3. Reducing variability in the model of service for supporting those with ADHD across NZ as part of the health sector reforms.

  4. Adopting best practice guidelines for ADHD.

  5. Establishing an ADHD ‘reference group’ with representation from government agencies, medical professionals and ADHD NZ to improve collaboration and information sharing.

  6. Delivering ADHD training for healthcare practitioners, including those in general practice, clinical psychologists, paediatricians and psychiatrists to ensure their understanding of ADHD remains up to date.

“Ignorance regarding ADHD costs lives. Literally. ADHD can be a scourge, an unremitting, lifelong ordeal, the reason a brilliant person never finds success but rather limps through life in frustration, shame, and failure, amid catcalls to try harder, get with the program (sic), grow up, or in some other way reform. It can lead to suicide, addictions of all kinds, felonious acts (the prisons are full of people with undiagnosed ADHD), dangerously violent behavior (sic), and a shorter life”

Hallowell & Ratey (2021; as cited in Murray, 2021).

Progress is Encouraging

Since the initial meeting in August 2022, the rōpū has reported a number of important developments.

  • In 2023, ADHD NZ launched the ADHD Research Foundation of New Zealand (ARFNZ), with the aim to address the lack of NZ-specific ADHD research and data. In particular, ARFNZ has prioritised funding for research into Māori and Pacific Islander experiences of ADHD, as well as research into support for people with ADHD in health, education and in the workplace.

  • The Ministry of Health have now removed the requirement for ADHD medication to be prescribed on a monthly basis, and it can now be offered for a 3-monthly prescription. The requirement for clients to seek a new ‘special authority’ every 2 years is also under review.

  • Consideration is being given by Pharmac to new medications to increase the range of pharmacological options available, including lisdexamfetamine, which has been available in NZ since June 2023, but is not currently publicly funded.

  • ADHD NZ recently collaborated with the AADPA, to bring to NZ international ADHD experts Professors Mark Bellgrove and David Coghill. This visit included live events in Auckland and Wellington and online training for the NZCCP, the NZ Psychological Society and GPs in NZ through the RNZCGP.

  • The RANZCP (psychiatrists) and Royal Australasian College of Physicians, as organisations that span both Australia and NZ, have endorsed the guidelines released by the AADPA last October. Since the AADPA guidelines have a strong focus on the Australian system, including a section on Aboriginal and Torres-Strait Islander groups, they have indicated that further work is required to consider what they may mean for practitioners in NZ.

  • Following the release of the AADPA guidelines, the NZCCP have agreed to offer a special ADHD issue of their Journal this winter, to help share examples of good practice from around NZ.

  • As part of the programme of health reforms, the Ministry of Health and Te Whatu Ora have suggested that they are aiming for a more unified version of health service delivery, which we hope may deliver a more consistent model of service for people with ADHD.

  • Green MP Chlöe Swarbrick continues to support the rōpū, providing a helpful conduit between the group and those in Government.

Nāu te rourou, nāku te rourou, ka ora ai te iwi
With your food basket and my food basket, the people will thrive

Government agencies and professional bodies are frequently called upon to work together and avoid ‘siloed’ working (e.g. Oranga Tamariki, 2023), reinforcing the view that this is something that rarely happens naturally. The Aroreretini cross-agency group is an example of where consumer groups, politicians, government agencies and professional bodies have come together to work towards meaningful change. Although there is a great deal of work ahead, we are hopeful that the group can continue to enable more people with ADHD—and our relationships to each other—to continue to thrive.