Attention Deficit/Hyperactivity Disorder (ADHD) is a common psychiatric condition that presents in childhood and which persists into adulthood and old age. ADHD appears to be underdiagnosed within New Zealand. A large number of adults who believe they have ADHD through self-diagnosis are unable to access a formal diagnosis due to the barriers of ADHD care in New Zealand. The experiences of these people, with and without a formal diagnosis in the New Zealand healthcare system, have not been explored in research to date.
To collect perspectives, information about day-to-day living conditions, barriers to access ADHD care and support, and to explore the unmet needs of those living with adult ADHD within New Zealand. To see if these needs match international reports on ADHD.
Design and Participants
In this mixed methods survey – a self-selected sample of adults (n = 186) who have either have a formal diagnosis of ADHD (n = 106), or have self-diagnosed as having ADHD (n = 80), were recruited from New Zealand via direct contact over Twitter or from within the ADHD New Zealand private Facebook ADHD NZ Adult Support Page.
Adult ADHD persons with undiagnosed or diagnosed ADHD report a lack of support, have more negative than positive outcomes as a result of ADHD, and are subject to societal stigmatisation, gaslighting, and discrimination. Barriers to healthcare are preventing those with the condition from getting a diagnosis, with a large portion of the undiagnosed systemically prevented from gaining treatment.
Adult ADHD services in New Zealand must be improved as a priority in order to prevent further harm from occurring. Wide scale education initiatives are needed for General Practitioner doctors, teachers, and the general public. Issues of stigmatisation, costs of treatment, availability of treatment, and current best practices for ADHD people must be addressed.
Attention-deficit/hyperactivity disorder (ADHD) is a common psychiatric disorder of children that persists into adulthood and old age with recent prevalence estimates being around 5% of the population across European countries (Kooij et al., 2019). In studies done in other Western nations, the rates of diagnosis indicate that large numbers of adults are going undiagnosed (Kooij et al., 2019). The current definition of ADHD in the Diagnostic and Statistical Manual of psychiatric disorders (DSM-5) was updated in 2013 after nearly two decades of research have found evidence of the persistence of ADHD symptoms in adults (American Psychological Association [APA] , n.d.). The inclusion of adults and the criterion on which they are assessed has been met with considerable debate. Our knowledge of ADHD presentation is evolving understanding as research improves (Matte et al., 2012).
Research in recent years has shown significant barriers to access to ADHD care internationally. In a mixed method systematic review of ADHD in primary care, a number of reasons contributed to lack of formal diagnosis of this condition; these were summarised into thematic categories: need for education; misconceptions and stigmas; constraints with recognition; management and treatment; and a multidisciplinary approach (French et al., 2019).
The burden of living with ADHD undiagnosed or untreated can have effects in almost every facet of life including academic achievement, interpersonal relationships, substance or alcohol abuse, financial and employment difficulties, criminality, increased comorbidity of other mental illnesses, and even early fatalities (Hamed et al., 2015).
The significant barriers to diagnosis have left some people who believe that they have ADHD to self-diagnose. Self-reported ADHD symptom tests such as the Adult ADHD Self-Report Scale (ASRS) and the Wender Utah Rating Scale (WURS) have demonstrated high diagnostic accuracy in Western nations (Brevik et al., 2020). As there are so many people living with ADHD undiagnosed (Kooij et al., 2019), the decision was made in the present study to allow those who had self-diagnosed to participate as they may highlight or verify issues with ADHD care in the New Zealand healthcare system.
The purpose of this research is a) to ascertain whether international trends in Western nations are applicable in New Zealand b) expose barriers to accessing ADHD care c) provide information about needs and concerns in this understudied population to the public sector on this issue.
This research is part of a mixed-method confirm and discover approach (Schoonenboom and Johnson, 2017) to gain an understanding of how ADHD care is being diagnosed or treated. Research overseas highlighted areas that might be of specific interest when looking into ADHD care within New Zealand. Specifically, French et al. (2019), showed that there were some fundamental issues present in most health systems in regard to ADHD treatment.
A qualitative approach was needed in some cases to discern reasons for self-diagnosis and reasons for not seeking or being prevented from seeking an official diagnosis. Specific research avenues divided the diagnosed and undiagnosed persons with ADHD for context specific understanding of ADHD diagnosis and treatment. The quantitative data collected was a number of multichoice questions, as well as Likert scale tests to ascertain beliefs about the current healthcare system as well as their view of ADHD, and knowledge of ADHD in wider society.
Quantitative measures were used to gain general patterns of experiences of ADHD adults within the healthcare system, their own ADHD management, as well as the knowledge of new ADHD treatment options. The questions around quantitative approaches were based on previous research conducted overseas into similar issues within ADHD healthcare systems. It was also important to capture respondents’ experiences within the healthcare system in their own words.
All qualitative data would be then thematically analysed in order to find common themes (Braun and Clarke, 2006).
Data was kept anonymously, in line with New Zealand privacy laws, and research abides by all modern university ethical standards. However, this research was conducted outside of any institutional learning establishment or special interest organisation.
The survey ran online from January 23rd, 2021 at 10:06AM to January 31st, 2021 at 11:59PM.
Due to the nature of being an online advertised survey, response rate is not able to be measured. Due to the lack of available data on ADHD population through official statistics sources in New Zealand due to privacy concerns – there is no accurate way to calculate sample size. The only available research on this is a single paper that has significant limitations as it only investigates the medication dispensation rates of ADHD medications, and does not provide a full picture(Dsouz
The need for private collection of data means that things like age, race, gender, and socioeconomic status were not considered. As an online survey was used, those without internet access would have been missed in any data collection. This potentially limits understanding of specific issues. However the aim of this research was to provide a general portrait of ADHD care in the New Zealand health system.
I work as an independent ADHD and Autism Spectrum Disorder (ASD) advocate and researcher. In order to get participants I recruited members through a public Twitter post as shown in Figure 1. In order to screen for New Zealand participants only, I required that they contact me directly through the Direct Messaging service provided by Twitter, or I would contact them through this same service. After quickly verifying that they were from New Zealand, I sent a link to the survey.
A second source of participants was the official ADHD New Zealand organisation – ADHD NZ Adult Support Page on Facebook. The invitation was posted a day later than Twitter as it was awaiting a moderator’s approval, as seen in Figure 2. A direct link to the survey was made available as the ADHD NZ organization moderates and limits participation to those within New Zealand with ADHD. Prompts were given at regular intervals on both Twitter and Facebook to increase participation.
The online survey was divided into seven sections with a specific topic focus, or requirement to aid in answering further sections.
The first section of the survey contained an introductory statement including background and rationale, data privacy considerations, and specific opt-in data collection requirements inline with all legal considerations (see Appendix 1). Users were able to identify their unique data by entering in their initials and a random number between 1 and 100 in case they no longer wished to participate or they could use ‘Not Applicable’ (NA or N/A) shorthand to opt out of any specific private data being collected. A simple math problem was used to verify that the entries were human participants.
The second section asked users a simple yes or no question whether to ascertain if the survey participant had received an official formal diagnosis.
The third section was only available to those who had answered no to the above question, this section was labeled “Adults with suspected ADHD without an official formal diagnosis”. It contained a yes/no question as to whether the participants had discussed the possibility of ADHD with their primary healthcare physicians.
Below, an optional question was added which allowed those who had said “No” to the previous question to provide a short explanation as to why they hadn’t, as the intention was to capture qualitative reasons for not approaching their primary care physician (PCP) or general practitioner (GP) doctor. The outcome of this would determine if the predicted barriers to adult diagnosis
The final question in this section was a multi answer question informed by other research in this field on what prevents people from receiving an official diagnosis. A free text field was available for common causes not listed.
The fourth section was specifically for those with an official formal diagnosis of ADHD – the purpose of this section of questions was to ascertain whether they were diagnosed as an adult or child/youth (under 18 years) using a single-choice question. Whether that diagnosis was made in public or private healthcare using a single choice question. The Phi-coefficent test would be used here to test a hypothesis that those who had received public healthcare for diagnosis were significantly more likely to have done so as a youth or child than an adult.
A multiple choice question was asked to see whether they were offered any counselling or mental health care management support or just had been given medication. There was also a free form option for “Other” as seen in Figure 3.
The final single answer question in this section was in regard to whether their ADHD is currently being managed with a mental health profession other than the prescribed ADHD medications.
The fifth section was a series of 10-point Likert scale tests using a value of 1 to represent strongly disagree and 10 to represent strongly agree. This was to get an overall picture of how people believe their ADHD is being managed, how well they think people understand their condition, and whether they are impacted negatively or positively by their ADHD, as well as general public views and disclosure of ADHD to new people. Standard statistical measure of mean used to describe trends based on responses.
The sixth section of this report asked specifically about ADHD Coaching services, and was deemed entirely optional. The rationale for including this is that I had only personally just learned about it as an ADHD adult.I provided information on the service, whether the participants thought it might be helpful, and then asked them to give a qualitative answer on what specific aspects of their day to day living they would like help managing.
The seventh and final section was another optional section. The two qualitative questions that were available here were “Please provide what actions or undertakings you made or have made to get diagnosed” and “Please provide additional comments you wish to make”. As this was specifically on healthcare I wanted to allow the option for people to submit any further concerns they might have had that I had not raised within the scope of my survey.
Of the 197 survey entries received, 11 were discounted due to a bug with Safari browser that would resubmit results whenever users opened the application. This data was easily found and removed, leaving 186 respondents.
Those with ADHD who had received a formal diagnosis made up 57% (106 participants) with those who had self-diagnosed making up the remaining 43% (80 participants).
Of those who had received no formal diagnosis 55% (44 participants) had tried to seek diagnosis through their general practitioner doctor, with the remaining 45% (36 participants) stating that they had not.
All participants without formal diagnosis gave reasons for not talking to their GP in the freeform field. The reasons varied with some common themes emerging (Braun and Clarke, 2006): a lack of confidence in their GP or mental health services to correctly diagnose or be open to diagnosis was most common. Other common themes involved a fear of not being taken seriously because participants did not appear superficially to be struggling or because other diagnoses or personal characteristics overshadow possible ADHD symptoms, as shown in the examples below. :
“I’ve been in the mental health system since I was 9 so I had assumed if I have ADHD they would have noticed but I’ve recently realized alot was overlooked back then”
“I’m not sure she would entertain the idea of testing and treatment, or she would assume I don’t have it because I present very well and successful to people who don’t know me or know me well.“
“Because I don’t feel he would believe me. I’m very personable & attentive when in a room with one person. Interpersonal skills are good and so people dont believe I can be so scatterbrained etc when talking one on one. If you sat on my shoulder and went through the day with me you’d see differently.”
“Because I have before and they have brushed it off as “it wouldn’t change anything”
“Doctors here don’t even bat an eyelid when I tell them I’m struggling with my mental health.”
“I avoid going to the GP at all costs. (They’re racist and too busy to do a safe job anyway)”
“My doctor has explicitly explained that he thinks my symptoms relating to anything are anxiety based (even though anxiety medication has not done much for me), but I was planning on asking a different GP at my doctors office this week.”
“I’m anxious to bring it up.”
“Afraid of being judged / not taken seriously. Baggage from previous struggle to get physical health issues taken seriously.”
“Previously when i’ve seen a dr it’s been about depression and anxiety, so any difficulty with focus etc has tied into that”
“Lack of confidence with getting an assessment. This is related to my age, and lack of confidence in medical services understanding of Adult ADHD and interplay with ASD.”
“My GP has disappointed me in the past and don’t think she would be much help with this, and I haven’t got around to finding another GP.”
“prefer not to go to any doctor, if it’s not neccessary”
Another common theme in the data was the recent discovery that they are ADHD.
“I’ve discussed it briefly with a student health therapist. ADHD (inattentive) only hit my radar as a possible neurodivergent dx for me in the last 6 months while looking for how to best support my quirky kids.”
“Only just became aware that certain traits that relate to me can be symptoms of ADHD”
“Has been a recent realization that I have ADHD”
“I had no clue about ADHD until recently”
“Only just realised it may be a possibility via internet”
“i always thought my behaviour was normal”
Finally, a perceived lack of availability of public mental health services and the cost of ADHD support or care are perceived barriers to care.
“Due to unavailability of services…”
“I don’t think I’d be eligible for referral in the public system”
“I’ve read that it costs loads to get a formal diagnosis.”
“I’m really worried about how much it could cost me as I’m still in uni and there is also no specialist in the town I’m currently at.”
The rest of the data was varied in concerns ranging from other health concerns that took priority, immigration status, already receiving alternative therapy or under investigation with other medical staff, COVID-19 delays for seeing the doctor, or a lack of time to seek diagnosis
Answers to the multi answer question on what is preventing them from seeking a formal diagnosis had the following results – cost of private diagnosis (61.3%), affordability of ADHD specialists (56.2%), I am scared that I do not have ADHD (30%), doctor unwilling to consider a diagnosis and will not refer me to a private service (26.2%), waiting for diagnosis through public healthcare (20%).
There was also the ability to add a reason not specified, the most common theme among the answers was a lack of trust in the medical system (17.5%), with examples below:
“Psychiatrist said going down the diagnosis route would complicate dealing with my anxiety issues.”
“Bad experiences with health system”
“My previous GP told me that my experiences were because I had a high self expectation, and that I didn’t have adhd.”
“Afraid to approach GP about getting a referral to specialist”
“Scared that doctor is going to think I don’t have it”
“I saw one psych and she blamed other mental health problems [redacted for privacy] for any or all possible symptoms and refused to continue assessment”
“Traumatic previous experience with a psychiatrist [redacted for privacy] has made me reluctant to engage with any psychiatrists since”
“Don’t see the need to finish the paperwork until better services are available.”
“There is no way of getting diagnosis through our system for free unless you are a child”
The stigma associated with having ADHD was listed (6.25%), with examples below:
“My husband is also concerned about me getting labelled and medicated.”
“Judgement from family who would help me in the diagnostic process”
“residual reluctance from social stigma around ADHD kept me from seeking help for ~20 years despite suspicions since i was ~10”
“Negative response from future employers”
Other less common themes are listed in the table below.
|Reasons for not seeking diagnosis||Percentage of respondents|
|ADHD is managed already||5%|
|Newly discovered they had ADHD||2.5%|
|Other health priorities||1.3%|
|Higher insurance premiums||1.3%|
In the next section people who had a formal diagnosis overwhelmingly were diagnosed as an Adult 84.9% (90 participants) as compared to those who had been diagnosed as a child 15.1% (16 participants).
Of those with an official diagnosis the vast majority had been diagnosed privately 75.5% (80 participants) compared to those who had received a public diagnosis 24.5% (26 participants).
Based on the results of the survey, people diagnosed by public mental healthcare services are more likely to have been diagnosed as a child than as an adult Φ = 0.31, p < .05. This confirmed the hypothesis showing a moderate positive relationship.
The single choice answer section on services that had been offered after diagnosis showed that participants were overwhelmingly just given medication 71.6% (76 participants), while paid services were offered to some 8.5% (9 participants), or free services 6.6% (7 participants). The answers in the other option had those offered no medical or therapeutic support 6.6% (7 participants), the remaining 6.6% (7 participants) had been offered a mix of private and public services, had been too young to remember, were actively receiving support via another source, or been provided with self management techniques.
Of those currently with a formal diagnosis, the majority were not currently managing their ADHD with health professionals aside from taking ADHD medication 79.2% (84 participants) compared to those who were 20.8% (22 participants).
The next section looked into participant views on issues with ADHD using a 10-point Likert scale with a rating of 1 meaning strongly disagree with the statement and a rating of 10 meaning strongly agree. All 186 participants completed this section.
|Statement||Mean||Agreement or Disagreement|
|I have the support I need to manage my condition||4.09||Slight disagreement|
|My ADHD is being managed well||4.58||Very slight disagreement|
|I have been provided enough publicly funded options to treat my ADHD||2.16||Moderate disagreement|
|I believe that my primary health care physician (Your Doctor or General Practitioner) has a good understanding of the challenges and needs of my ADHD||3.91||Disagreement|
|ADHD often negatively affects my day to day life||8.03||Moderate agreement|
|ADHD often positively affects my day to day life||4.98||No agreement or disagreement|
|I believe I would benefit from more support||8.85||Strong agreement|
|Getting an ADHD diagnosis is easy in New Zealand||2.50||Moderate disagreement|
|I never have faced ableism (being discriminated against due to your ADHD) in the healthcare system or had my medication questioned by a healthcare professional in New Zealand||5.02||No agreement or disagreement|
|I feel safe disclosing my ADHD status to new people||4.35||Slight disagreement|
|I believe that the general public is well informed about how ADHD presents and the difficulties of living with the condition||1.93||Strong disagreement|
The next section focused on ADHD Coaching a new line of assistance that is available for ADHD care. When asked if they had heard of this service before the majority had not heard of it before 67.7% (126 participants) compared to those who had heard of it 32.3% (60 participants).
When answering if they would use the ADHD coaching services to manage their ADHD using a multi answer question – the majority would indicated yes 85.5% (159) they would use it based on the following conditions – if the service was publicly available 68.3% (127 participants), if the service was reasonably priced 58.1% (108 participants), or if the service was offered pro bono 21% (39 participants).
Of those that answered that they would not, the most common objection was that they would not have the time 8.6% (16 participants), while 1.6% (3 participants) believed there was no need for them personally to access this service.
An ‘other’ option was given, and the most common answer was that they were unsure of the service 2.6% (5 people) The other single participant (1.3%) answers given were that they were in coaching overseas, that they wouldn’t want to take up space if they didn’t get a diagnosis over someone who did, that the Employee Assistance Programme in New Zealand should cover things like this, that it was not applicable to them due to their current training, or that they are uncomfortable with ‘managing their ADHD’ because a lot of their issues come from unreasonable normative expectations.
Common themes were also identified in answers to the freeform optional question which 158 participants answered about what help they would like in their day-to-day lives. I did not include 8 entries who were unsure or answering outside the scope of the question. The most common response related to executive function issues 55.1% (87 participants) examples below:
“executive function stuff”
“Just being able to function on a day to day basis with things like cooking and cleaning for myself”
“Improving ability to ignore distractions and stay engaged in boring tasks which are required”
The next common theme was planning, organising, and time management – the distinction with the last category is that this is about designing schedules, rather than executing them as above, with 35.4% (65 participants), examples below:
“Planning not just for myself but for other staff too.”
“Generalised hints for organisation”
“Organising the things that I need to do daily especially uni related things”
“scheduling free time, hobbies and work time separately, daily routine”
The next common theme, with rejection sensitivity a common element, was emotional regulation with 17.7% (28 participants):
“Stress, emotion regulation”
“relaxing when my brain is wired”
“help with minimising self-destructive habits”
“Emotions. I feel like adhd makes emotional regulation hard and brings up stuff that isn’t quite anxiety or depression and that normal channels aren’t always equipped to help you.”
The next common theme was issues with low self worth or self esteem, confidence, and negative thinking 13.3% (22 participants):
“not being able to reach my own high standards.”
“setting realistic expectations of myself”
“negative thinking cycle”
Less common themes have been summarised in the table below:
|Day-to-day life issues||Percentage of respondents|
|Managing others demands||7.6%|
|Anxiety or intrusive thoughts||7.6%|
|Education on how ADHD affects their lives||7%|
|Losing common items||6.3%|
|Socialising and Relationships||3.8%|
|Maintaining eating habits||1.3%|
The next section was a free form answer section 134 participants gave an answer on what actions they took or had taken to get diagnosed. A very common result is being failed by the public mental health system or having to wait too long 22.4%(30 participants), examples below:
“I saw my GP who advised going through the public health system for dx because of outdated measures and slow. Went on a waitlist for a partially funded service but then moved out of the catchment zone so ended up going to a private psychiatrist”
“Contacted private psychiatrist to make appointment, had appointment, paid for it, got diagnosis, paid for medication reviews.Didn’t bother with public system as heard there were huge waiting lists and it was not dealt with by my DHB. Had experience with the time taken to get my children diagnosed in public system, so knew the system was woefully under-resourced and I was unlikely to be helped.”
“In 2016 it was my final semester of university and I was on the verge of failing all my papers, so I finally went to my GP and suggested I thought there was something wrong. I suspected it was ADHD but was too nervous to propose it myself, so I said I thought I was depressed. But after I explained my experiences the doctor immediately suggested it sounded like ADHD could be my main problem. We went through the checklists and she asked a bunch of questions, and ended up saying I should try and get a proper diagnosis.
After this I initially tried to go through the public system, although my GP warned me I probably wouldn’t get an appointment. I had a ten minute phone call with a nurse, mostly in tears, as she asked me about my social life and whether I had a part time job and could pass my courses, and eventually concluded that she didn’t think it was ADHD and I wasn’t that badly off anyway so should just try taking antidepressants for the time being and see what happened.
In the end a relative (I didn’t feel comfortable talking to my parents about mental health) paid for and drove me to an appointment with a private psychiatrist, where I got a diagnosis and a prescription for medication.”
“I researched a lot online and compared my experience to what I saw depicted on Twitter, as a lot of artists and other creatives with ADHD congregate there and share their experiences (particularly @ADHD_Alien). Once I was sure that I had adult ADHD and that my insurance could cover it, I made an appointment with a psychiatrist specialising in ADHD and made sure I was able to get the diagnosis in that session alone because I wouldn’t have been able to afford anything else.”
“Requested referral from WLG Community Health, Maanaki House AKL, and GP. All went nowhere/declined. Currently pending private appointment”
“Talked to a psychiatrist at community mental health, had observational scale tests done by family/friends, trying to save money to see a private specialist”
“Three different GPS between 2018 and 2020 but none with a long term history of me and only one of them had an understanding of ADHD in adults but I dismissed it back in 2018. The next told me I would’ve been an underachieving hyperactive child. The next told me it could be sleep apnea (spoiler: it was not). I’ve procrastinated for over a year now but finally going to see someone private (after I was told I shouldn’t clog up the mental healthcare system) but only due to my family pitching in for my Christmas present.”
“My GP said there was no point referring me to the CDHB because they don’t deal with adult ADHD so gave me the details for the Psychology Clinic or something – and adult ADHD thing run by Canterbury University but when I rang them they said their waiting list was full so I ended up getting a Skype appointment with a Psychologist in Auckland instead”
“Visited GP, requested referral to psychiatrist, went private as public waiting list was forever. Several visits to psychiatrist later I was formally diagnosed.”
“I got to the point where I couldn’t get out of bed or complete basic tasks. I sought out medication/treatment out of desperation. I got a diagnosis from a private psychiatrist after being told I would have to watch at least 6 months to see someone through the public system.”
The simplest process with to get a diagnosis was through GP then referral to private service, or to go through a private specialist without GP referral 20.9% (28 participants), an expensive process usually with examples listed below:
“I approached my GP about it, who referred me to a private psychiatrist who diagnosed me and prescribed me rubifen. Overall cost was about $500.”
“I sought out a diagnosis from a psychiatrist that specializes in adult adhd.”
“Suspected for years, mentioned it to a GP after a head injury, which ended up being a catalyst for the diagnosis (my self-created coping mechanisms were disrupted after the injury and I could no longer manage alone). I was referred to a psychiatrist and it was only through the sheer luck of having health insurance through my job that I was able to get diagnosed and medicated by the psychiatrist, avoiding the $450+ per appt fees.”
“I got referred by my GP and was assessed by a psychiatrist 2 months later.”
“had to find a private clinical psychologist”
“Paid to see a private psychologist for assessment”
“I went to a GP who referred me to a doctor”
“Had to go through a GP and get recommended someone”
“I spoke to my doctor who referred me”
“privately paying for diagnosis”
While some have ended up being treated have had massive delays due to medical misdiagnosis or perceived lack of education with GPs, with some still awaiting a diagnosis and without hope 14.9% (20 participants), these examples below:
“I had my first assessment when I was 8 years old and have seen countless mental (counsellors, psychologists, psychiatrists), medical, disability focused and educational professionals (note I was not diagnosed until this year at age 24, after I read an article about someone diagnosed with adult ADHD and then sought out a psychiatrist that specialised in this area)”
“Years of seeking help for insomnia and fatigue with no help, misdiagnosed as depression , finally finding a gp interested in neuropsychology that suggested screening (at 41yrs old, after having given up my career due to poor functioning), no availability of public funding so paid $700 for two Psychiatrist appointments.”
“I feel very privileged that I was able to get an ADHD assessment and subsequent diagnosis. Since 2012 I had seen at least six publicly-funded mental health professionals (including three psychologists), but it wasn’t until I saw a private psychologist who could take the time to learn about my past and symptoms – and explore potential causes rather than only tackling symptoms – that it was suggested to me I sought an assessment for ADHD. In 2019 I was assessed by a private psychiatrist over Skype (as there were no private psychologists in my area at that time), and was given a confirmed diagnosis. I was very privileged to be in a financial position where I was able to pay for the psychologist and psychiatrist appointments.”
“Told my current Doctor I wanted to be assessed for adhd. Not the first time I’ve brought it up with a Doctor but the first time one has taken me seriously. The first Doctor I told said I didn’t Look like I had it becos I wasn’t moving a lot. I was much younger and not very assertive. Almost 15 years later I’m on meds and I wish I had been taken seriously from the beginning.”
“”Asked GP if I could be assessed. He said he didn’t believe that I was likely to have ADHD given I have post-grad education, and told me to use EAP to talk to Psychologist about what “”rewards”” I might be seeking with delaying behaviours.
Within the next couple of weeks my team got restructured, I went contracting, and no longer was eligible for EAP.”
“My area exclusively has locum GPs, so every time I go to follow up, I have to start from the beginning in regards to looking for a diagnosis and convincing them that I need help”
“Two appointments with different GPs asking about diagnosis process, the first shut down line of enquiry and made me feel too uncomfortable to press the issue, the other referred me to four free sessions with a psychologist to discuss procrastination.”
“Talked to my GP and had to have multiple sessions convincing them I might have it, then trying to get a psychiatrist to see me”
“I found out information about ADHD, my sister was talking to her friend about herself and her friend said she was ADHD and my sister should get tested. My sister got diagnosed privately and helped me through the same journey. I booked myself in and got diagnosed. I have been diagnosed with depression and anxiety through my gp and have been written off as that. No help to find anything else no matter how crazy or scared I felt.”
“I was diagnosed as a child but my mum didn’t want me to be medicated, had to get rediagnosed at 30 when I decided that I wanted to try medication as a means of managing my ADD as I was very stressed and overwhelmed at work. Told my GP (who offered me anti-depressants as a stopgap measure, which was totally unnecessary), got referred publicly, within a few months I saw a clin psych who rediagnosed me without hesitation and put me on Ritalin.”
“I had to spend nearly $2000 to get a diagnosis and some initial coaching, all private. I also had to self-refer as the doctor I saw at my GPs, didn’t really understand what I wanted.”
“Asked several GPS for diagnoses and ritalin (didn’t know it was restricted), was repeatedly shut down, one GP asked if I was just stupider than I thought, eventually got a nice GP, helped me find a specialist (Dr H), borrowed money from parents to get tested as WINZ are bastards.”
“I asked the doctor for help with managing my life better, and gave him some examples of problems I have that I’ve noticed other people don’t seem to have, and he asked several questions of me, and stated that it wasn’t ADHD or anything similar, that I just had to work harder at making myself do things.
I researched other ways of getting help for these things, but couldn’t find any more help. Apparently you have to be referred by the doctor. I’ve since asked about ASD as well from the doctor who has said that there’s no help for “that kind of thing”, so getting a diagnosis is a waste of time.
Someone suggested I approach our local public mental health centre, but I had a very bad experience with them several years ago over a trauma-triggered breakdown (they refused to listen or help me until I took SSRIs and when I refused to take them because my body reacts dangerously to SSRIs, they then accused me of malingering. They labelled me as “resistant” and upped the number of prescriptions I had to take in order to access care, so I had to discharge myself while still being suicidal to keep myself safe from them), as a result I get a severe panic attack any time I go near them, it would be injurious to my mental health to approach the local public mental health system in this issue.
I am also on a benefit so I do not have the funds to seek private care/diagnosis.
From here, I have no known options to get a diagnosis, so I have to deal with everything on my own – with varying degrees of success.”
“I had to refer myself after being ignored for 20 years by gps”
“Seen GP, had some low level testing there, stopped at referral.”
“Talked to my doctors, have been told that’s just how makes are when explained about my hyperfocusing and forgetfulness, second doctor was more helpful and told me to bring in collections from my parents and such of how I was when I was a kid, git told even if I was a strong candidate that it was highly unlikely I would be seem still since I was highy “successful/functioning “(I think that’s the word ).”
The public health system has worked for 3.7% (5 participants), although some faced significant delays in diagnosis:
“Referred to community mental health services for suspected ADHD and mood disorders by GP, diagnosed with a mood disorder and put on the waiting list for an ADHD assessment, assessed for ADHD more than two years later.”
“My daughter was diagnosed thru the public system and I realised that I probably had it as well. I made a GP appointment, asked the doc to refer me to a psychiatrist. After a few meeting with the psych I was prescribed ritalin and diagnosed. I was referred to a psychologist and undertook therapy for over a year. All free. In Gisborne”
“Have been diagnosed both privately and publicly, very different experiences. Am now also in a position professionally where I have made diagnoses.”
“I was given a referral to the public mental health team when I asked, and had 2 appointments with a psychiatrist – the initial one was 2 hours long, and the second one as a check in and confirmation of diagnosis.”
“Requested appt with specialist thru public system via gp”
In the remaining entries people have given up on a diagnosis, had been diagnosed as children with no recollection of the exact process, were diagnosed overseas and had their diagnosis confirmed here, some are traumatised from previous experiences, some are still waiting, some had medication concerns, some have only newly discovered that they have ADHD, some had unclear diagnosis descriptions, and a few gave answers not related to the question which were discounted. The answers that have relevance to this research beyond this simple text description I have posted below:
“Lots of trial and error lots of its your parenting when doing my children lots of discrimination lots of they don’t have it they are fine and lack of school support”
“I always had a suspicion and when everything was getting real hard I borrowed a tonne of money off my mum to get diagnosed and get help.”
“”I did a hella lot of research beforehand–for a couple of years, actually, on and off, trying to decide if I was convinced enough to spend $400+ on an appointment. I needed to basically be sure myself (because $400+ is A Lot), so there was a lot of reading and thinking and lurking on ADHD and ND and ExecDys forums (and even now, I’m still not Entirely Sure, given that I think ASD is also a possibility in addition to ADHD and I haven’t managed to consistently take the meds yet, and that’s apparently a diagnosis method of its own).
I went private. I’d ‘d tried to go through the public health system and my doctor applied for me, even though she was personally dubious–she has very little knowledge of ADHD herself–but they sent back a letter essentially saying ‘we don’t have the funding, go see the national ADHD organisation’, which was deeply unhelpful, but also utterly expected from the public system. My doctor did actually recommend seeing the private psychiatrist I did eventually go see, though.
I have a couple of friends who got diagnosed via that psychiatrist–one of them getting diagnosed was the reason I started being aware of ADHD as potentially applying to me–so I asked them for advice and for what to expect in the appointment. I also did a bunch of reading and searching through the ADHD NZ page backlog to look for psychiatrists that were often recommended, and why they were recommended, and whether any of them had been complained about etc.
And then I booked an appointment. There was, like, a month and a half’s wait. I’m aware I don’t present as immediately ADHD because I have fifty billion compensatory strategies (e.g. very very compulsive overpreparer), so during this time I wrote up a detailed list of symptoms and reasons why. I also phoned up ahead of time to clarify if this psychiatrist diagnosed ASD, because I’d heard he didn’t, and was told by the staff that he did (but it never got brought up in our session).
I wrote the obligatory I’m Going To An Appointment And I’m Freaking Out post in the ADHD NZ group (and was comforted by the comments while on the bus and in the waiting room), and then was incredibly nervous and low-key freaking out the entire way through the appointment, enough to feel absolutely terrible after. Which the psychiatrist apparently Did Not Notice, based on his report. I did not, in fact, need my list for that conversation–my list went into way more depth than the questions I was asked (although it definitely helped me clarify and order my own thoughts prior to the appt).
I was tentatively diagnosed, in that I got a ‘given the evidence, it seems more likely that you do have adult ADHD than you don’t, but you’ll need to take the meds to see if they work and that’s actually the case’, which was not particularly definite as a statement (hence still not being sure). I also did not feel particularly seen or heard by this psychiatrist, so I’m intending to go to another one (pref. capable of diagnosing ASD) when I go for a medication review (once I’ve started taking my meds consistently).
That’s it, that’s my diagnosis experience.”
“Saw a psychiatrist but needed to show him reports from school to ‘prove it’, didn’t have them. Didn’t seem to know about the hidden or inactive adhd symptoms often in women”
“Looked into cost of private psych with student discount, looked online to see if there is a link between cancer survivors and ADHD, looked at if there’s research into use of medications such as Ritalin in those who have difficulty concentrating after chemo, watched videos about living with ADHD.”
“None really, I have discussed depression and anxiety with my gp and a specialist but have only recently started thinking that my difficulty focusing, hyper-awareness, poor organisation and time management, and eclectic interests might be linked to an attention disorder. These have been features of my life since I can remember but I have learned to live with them, so I’m not really sure what help the gp could be – gp visits are expensive too.”
“I asked to be referred to a physiologist and paid out of pocket for appt which ended up with being traumatised”
“I have been diagnosed with General Anxiety Disorder but there are some things in life that don’t feel connected so I’m investigating ADHD as well to see if it’s both or just a really nasty anxiety disorder”
The final question was a free form field allowing people to make any additional comments they wished, 73 participants provided feedback. Some comments were either survey feedback, thanks to the researcher, or personal requests for contact. These have been left out of results.
The most common theme in this free form field was expressing concern about the lack of support in adult ADHD care or ADHD care in general, some examples here:
“My psychiatrist left the clinic before we finished finding a medication that worked for me and I am not aware of any other suitable psychiatrists in Christchurch so I had to manage my condition without meds”
“Trying to deal with ADHD is so incredibly difficult in NZ. Why?”
“The nurse said in first appointment that the community health probably wont know what to do with me/ my referral”
“I feel a formal diagnosis is the first step to legitimate health care. I’m absolutely stumped as to how difficult the process has been via public means. Completely inaccessible for anyone that doesn’t have income that they can fork out $500-1000 on a potential diagnosis. Also it feels like a lot of doctors might not understand how critical and central it is for lots of issues – ie co-morbidities.
I’ve already started doing a few helpful things for people with adhd (understanding how dopamine and stimulation works) and it’s making a huge difference to how I function and my quality of life. But if I had a formal diagnosis then I could really harness some healthier mechanisms to deal with adhd and harness its power too.”
“Psychiatrist is very expensive but doesn’t really provide a lot of support apart from giving access to meds, would have appreciated a referral by them or gp to some counseling and coaching and learning about adhd”
“As I further understand how ADHD permeates my life (thanks to ADHD Twitter, largely), I become increasingly distressed about only receiving a diagnosis in adulthood, the lack of support available, and invalidating comments from people around me. The support I really need the most is therapy, but it is financially inaccessible to me.”
“Fortunately I was able to budget to be able to pay privately but know this is a significant barrier to most people. Also the lack of any funded counselling is distressing. In addition we don’t have access to one of the leading overseas medications, Vyvanse, which I’d like to try as my current med is short actin* and i5 is difficult to remember to take the second dose. In addition, having to get a prescription from the dr every month is very expensive, there should be the ability to get 3 month prescriptions which the pharmacy can ensure are only filled monthly.”
“Getting an ADHD diagnosis and the medication I need to function in my day-to-day life should not be a potentially $400 expense.”
“There are no supports funded for adults with ADHD – I was almost 50 years old when diagnosed, and apart from ritalin (which is great) there is no other support around that is funded for me – medication is only a part of what I need to function”
“The process of diagnosis was lengthy and expensive, I am grateful that my University funded this before I had to come back to NZ (due to covid). My doctor referred me onto a psychiatrist here who had a 6 month waitlist but a friend with ADHD put me on to [ADHD Clinic] who was much shorter and more helpful.”
Another theme was lamenting the stigma and sadness associated with living with ADHD undiagnosed 20.5% (15 participants), examples given here:
“Attitudes towards adhd in public health sector are appalling, lack of knowledge of how adhd presents in women and girls is seriously lacking and adhd is stigmatized horribly. I had a public health sector try and tell me my 12yo was bipolar, despite myself and my son being diagnosed adhd (with strongly genetic indicators in gene testing), despite there being no evidence of bipolar. He then said “it looks the same on [male name]” and wanted to put her on lithium.”
“In the public health system, in almost any context, if anyone who is undiagnosed raises that they may have ADHD they are often immediately labeled a drug seeker which is patently false for probably almost every case. This is stopping people being able to access medication that they need to treat their ADHD as well as being able to be diagnosed in the first place, and, if this is noted in their file, can lead to further discrimination from other health providers including GPs, hospitals and psychology/counselling/mental health services.”
“Specialist at Gisborne Hospital stated he did not believe in adult ADHD and strongly implied i was drugseeking”
“I feel like I’ve had a very easy and successful path to adult diagnosis, no doubt aided by my childhood diagnosis, but by the same token I’ve had GPs minimize my symptoms as I’m “high-functioning” and good at masking my symptoms and distress, and offering incredibly patronizing suggestions like “maybe you should try writing to-do lists” as if I don’t already write both physical ones, and digital ones with programmed reminders and alarms”
“It’s frustrating that companies know nothing about ADHD and aren’t able to accommodate to staff who struggle with it. I had to leave my last job at a [their profession] due to HR and management refusing to work with me on making small accomodations to enable me to work efficiently. There should be government provided guidelines and resources for this kind of thing.”
“Due to my age and the attitude of most Gps regarding adult ADHD, I have a very real concern that my medication will at some point be refused or made difficult to access, as it seems general understanding of the presentation in adults/women seems very limited. Also zero help with managing symptoms or life in general, or even information in general about the condition was offered.”
“I think there are probably so many of us, especially women, that have been labelled as lazy or ditsy, but actually have ADHD. Wish I knew before high school.”
“I would like to optimize the life I have left. I sometimes feel hamstrung by my inability to be consistent, on time, organized, proactive in planning and moving forward (ambition), follow though, forgetfulness and clumsiness. In saying that I’ve got an awesome personality and connect in well with people. I just wish I was able to keep more things in head without everything fleeting away.”
“Its a shame it was never picked up when I was younger.”
“It can be really hard having ADHD and trying to get through life on your own with your kids after your girlfriend leaves you.”
“My life would be very different effected my health relationships work education parenting etc if I had of had help when I was younger to be understood taught differently, encouraged not just left to deal with it myself with no understanding. I knew I had it years ago but just got told there’s no such thing. Im glad more awarenesses is slowly coming”
The next most significant section was a request for more education in general across all sectors for ADHD knowledge 15.1% (11 participants), especially for women with ADHD, examples below:
“This condition is poorly understood, more needs to be done to assist with diagnosis and support”
“I especially would love to see more open discussion/available information about women with ADHD and how their symptoms differ, as well as the ways they are pressured to mask negative symptoms from an early age, and consequently fail to be diagnosed. For me, medication has helped A LOT, but bigger picture there is still a lot of healing/work to be done, but it doesn’t feel like there’s much out there atm (unless you’re wealthy).”
“”I have had 3 major mental health issues in my life. In each case the ability of the medical system in New Zealand to respond was pitiful. Had it not been for a supportive partner I would likely not be here responding to this question. Doctors, as primary support contacts, are typically unable to provide quality diagnoses, do not have a network for providing competent MH referrals, and can only afford sufficient time to “uhuh ahaha ok take these tablets” not a diagnosis, and not enough to make a meaningful difference. If I had sufficient support during my first incident aged around 20 or 21, I would likely not have had the subsequent ones. My journey in understanding ADHD and related issues has largely been lead by informal discussion, internet “”diagnosis””, reading as much material as I can get my hands on. I estimate the cost to the taxpayer (simply because of lost taxes) to be 20-30x what any actual medical support might have been earlier in my life. Not funding mental health properly is like not funding dental care for children.
I call on the govt to start training all doctors, including those already “in the field”, on mental health issues, to increase funding for speciality care through pyschologists and psychiatrists, and to build an explicit advisory network for doctors, so that they can be informed, and get competent referrals, for their patients.
I call on the school system to be informed of ADHD and similar MH diagnoses, to be able to catch and support people earlier, so that we do not go through life branded as unable to concentrate, or having failing grades, and that we unblock the potential and creativity that I found after the education system, and avoid “”self medicating”” that many of us fall into, with drugs, alcohol, and other high stimulus activities.
The illusion that MH is a “cost” on the system, needs to be unveiled, and we need to realise that for every person unable to function to their potential, we accept a downstream cost in schools, workplaces, prison systems, and healthcare, that could have been avoided, just like caries & brushing teeth, by appropriate care and training at the time.”
“Public needs educating on adhd,and more free holistic therapys should be available,to heal from late life diagnosis,and needing to unlearn detrimental coping mechanisms.Pubic needs to understand how debilitating adhd can be.Wish we had brain scans available in nz too,for free”
“”LOL – was thinking of all the things I’d forgotten to add…..
•Daily empathy reminders for spouses
•How to approach spouses you suspect have ADHD
•How to tell your children your challenges.
•How to tell your children they have ADHD but are normal?
• Approved information handouts/emails for ignorant & arrogant family members, teachers etc –
outlining general ADHD challenges ,
the 3 types of ADHD and common additional behaviours, eg, ASD, severe anxiety, low mood- depression, constant physical/eye movements, appropriate activities, awareness of sensory overload. Type of communication required.
When to ask for assistance rather than discipline.
Explaining thought patterns (your horse drawing example). That person/child is intelligent & normal,
Their teaching & patience needs to be modified to bring out child/persons talents and not to negatively affect their self esteem because of being born with ADHD – as will lead to irreversible negative effects. That their voiced personal negative opinions are unhelpful and not required because authorised health & social professionals are aware of child/person and are in constant contact with child/person/guardian regarding school life.”
“I’m comfortable with the fact that I have adhd less comfortable in the fact I pass it on but hey thats life and we just get on with it. Understanding from others would be nice instead of constant battle”
“I did not know until this year that my symptoms were common with adhd. It wasn’t until I was spending a lot of time with a adhd person that they often told me the things I was complaining about and struggling with in life were common symptoms and that I should get a test.”
“I didn’t even know I had ADHD until a month ago, becoming suspicious a few months back after a friend received a diagnosis. I believe ADHD (especially in adults and women) is constantly misunderstood and I’ve only recently realised that my inability to do certain things was due to the way my brain was differently wired rather than me being ‘stupid’ as I have always felt. The inattentive version being particularly less spoken about. As much of a relieving realisation as it’s been, it’s unfortunate that I only found out of this being my reality through a friend, with countless doctors writing off my behaviour as casual procrastination and my own fault.”
The last significant theme was participants talking about their lack of trust in the NZ healthcare system, examples below:
“After being diagnosed I was offered medication but unfortunately it did not agree with me, I did not have the funds to pursue CBT or further psychiatrist appointments and university counseling was even more demoralising because of the lack of knowledge, understanding and support around women with ADHD. Currently am unmedicated and untreated, have learnt to live with the fact that I’ll probably never function 100%”
“I’ve got my assessment tomorrow and I’m ridiculously anxious wondering what if the hundreds of dollars I’m spending will be for nothing. To just be told again that I’ve got high standards of myself, and be provided with no answers as to why my brain doesn’t seem to work the same way as everyone else. This is despite me having an experience where I talked to someone who had recently been diagnosed, and we shared our common experiences of our lives being a hot mess. A friend was listening to this conversation and their listening to our experiences got her to go and seek an assessment herself. Turns out she has adhd”
“It took quite a bit of courage to bring it up with the psychiatrist and so was quite disappointing for it to just be shut down. It feels quite difficult to engage with the ADHD community and find help in other ways without an official diagnosis.”
“as i was always in high stream classes in school (with “could do better” on my report cards) i never felt like anyone understood how hard it is for me to set my mind to a task, or stick with it after i feel like is seems too hard. Friends with an ADHD diagnosis tell me they think that’s what I have but drs tend to brush it off as depression + anxiety”
“”I still don’t know if I have ADHD or not, I feel enough like I might and that it affects my ability to work but because I can “get away with it” and it’s not obvious how much I’m struggling no one including doctors believe me. Even if I don’t have it I really wanted to go through the diagnostic process so I can stop worrying about it. I’ve struggled with anxiety depression before, so therapists and GPs often seem to think that’s the root of the issue, when I actually have the suspicion that the disorganisation, feelings of not living up to potential, and general stress (potential ADHD?) may have been the root of the anxiety and depression, rather than the other way around.
Fighting to see someone who can diagnose me is too much to deal with, doctors left me feeling invalidated and uninformed even of how to pursue diagnosis privately, the psychologist was helpful for general therapy but had nothing useful to say about any potential ADHD symptoms or management, and I can function even though I am often feeling stressed and overwhelmed, so I have mostly given up on diagnosis.”
There were also a number of comments made about difficulty of getting an ADHD diagnosis or treatment due to other comorbid conditions 5.5% (4 participants), examples below:
“Was advised medication not required but long history with anti depressants so not sure if depression is related to non treatment”
“It’s difficult because I have bipolar disorder as well and ADHD meds can trigger mania”
“I would like to get diagnosed, but I have so many other health conditions, I cannot cope with yet another diagnosis at the moment.”
The was one other relevant comment made – expressing concern about self-diagnosis of ADHD:
“I do worry a bit about the current trend of ADHD self diagnosis, as a lot of the most ‘popular’ and discussed symptoms can be attributed to general anxiety too.”
The purpose of this survey was to fill a gap in current knowledge and confirm public healthcare failings for those living with adult ADHD. In line with research from other countries (French et al., 2019), the research suggests there are large gaps in ADHD care, knowledge, treatment, and support. Further avenues for research have also been identified due to the exploratory nature of the survey.
Needs and Concerns
Most of the diagnosed participants were diagnosed privately, which suggests a large lack of equity in care. This is in line with other recent findings that have found that although ADHD medication dispensation rates have increased in New Zealand from 516 per 100,000 in 2007/2008 to 996 per 100,000 in 2017/2018, the distribution of medicines has a male bias, and also there are signs that certain groups are being more undiagnosed than others (D’Souza et al, 2020). Those adults who had been diagnosed in the public system were more likely to have been diagnosed as children rather than adults.
Qualitative thematic analysis (Braun and Clarke, 2006) showed that common issues that ADHD adults would like assistance with are executive function issues; planning, organizing, and time management; emotional regulation and rejection sensitivity; issues of self-esteem, negative thinking and confidence also featured highly.
Both the qualitative thematic analysis (Braun et al., 2006) and Likert scale results show a need for increased ADHD education, as well as other research into this field (French et al., 2017; Kooli et al, 2019). General practitioner doctors must be upskilled as well as those in educational institutes. Education must be provided and awareness must be increased in the general population – where ADHD people rated knowledge to be the worst. The effects of negative stigmatisation cause lasting damage to self esteem, and prevent participation in society (Hamed et al., 2015).
Socioeconomic analysis on the costs of ADHD have demonstrated “the individual and societal burden of ADHD in adulthood and highlight the importance of continued support from childhood–adolescent to adult health services and early prevention of multimorbidity”(Du Rietz et al., 2020). This has been confirmed in other studies also (Pallanti and Salerno, 2020).
New Zealand mental health services must address the care of ADHD children and adults as a priority. The looming fallout of COVID-19 on finances is likely to have lasting effects, people with ADHD are more likely to be unemployed (Hamad et al, 2015) and men with financial issues and ADHD are four times more likely to be at risk of suicide than the general population according to recent population studies (Beauchaine et al., 2020).
Perceived barriers to accessing care
Almost half the participants for this survey believed they had ADHD without diagnosis and a large number were unable to access support care they needed. Common themes were confirmed around misconceptions and stigmas; constraints with recognition; management and treatment(French et. al, 2019).
The biggest barriers to diagnosis according to those undiagnosed are the cost of a diagnosis , and the affordability of ADHD specialists, that undiagnosed participants are scared that they do not have ADHD – this could be explained by medical gaslighting where patients are not believed by doctors for reporting their symptoms, indeed this was confirmed with the other option available where a reported a lack of trust in the medical system. Undiagnosed participants also reported that their doctor was unwilling to consider a diagnosis and referring them to private service. Undiagnosed participants also waiting for a diagnosis through the public healthcare system are significant .
Of those who are diagnosed, large issues have been found in ADHD treatment and care, with an overwhelming majority receiving only medication. While stimulant medication does work to reduce symptoms, it does appear that it provides no long term benefits (Rajeh et al., 2017). The large majority of those who have been diagnosed are not receiving any therapy aside from ADHD medication.
Recent advances in ADHD science – such as ADHD coaching – as described in, Kooij et al., 2019, do not appear to be available here, or are not widely available. ADHD knowledge of these new services is low even among those who have enough knowledge to consider a self-diagnosis or those currently with a diagnosis. ADHD Coaching has shown positive results in multiple preliminary studies (Kubik, 2010; Prevatt and Yelland, 2015; Wentz et al., 2012). When asked if they would engage with this service nearly all participants thought they would try the service if offered, contingent on price, but the majority of ADHD people had not heard of it before this survey.
Limitations of study
No criteria for ADHD self-diagnosis was established. It would have been a good idea to use some statistically proven measure to ensure that people who had self-diagnosed scored highly enough on the ASRS or WURS symptoms tests.
A longer survey period would have allowed more participants, as well as making the survey available offline to get a clearer picture of ADHD care in New Zealand – limiting participation to Facebook and Twitter would have also had an effect. As I am an independent researcher, a lower level of trust in participating may have been a factor. While every measure was taken to ensure people did not respond multiple times, there were no data restrictions on persons doing so, although unique identifiers and variability of N/A responses showed no patterns of response to alter the data. Where duplication of data had occurred, as with the Safari bug, it was easily eliminated.
People often don’t know they have ADHD. Knowledge of this condition is low, it’s presentation in women is especially not well understood. This means that there may be large numbers of undiagnosed but unknowing persons who were not included that require care.
With a small number in active care and the vast majority being given just medication to treat ADHD rather than the recommended combined therapy (Rajeh et al., 2017); a more qualitative look into how ADHD affects those with an official diagnosis are affected or educated about day-to-day presentation would be an area of interest. While perceived public knowledge was measured in this survey, no qualitative or quantitative question was asked about how well participants understand exactly how ADHD affects day-to-day life. Anecdotally, in ADHD support groups, there have also been reports of widespread discrimination of ADHD people in workplace and schooling environments.
A study could be run in New Zealand on the efficacy of ADHD coaching, this service could be publicly funded and used to measure specific outcomes such as academic performance as done overseas, with recommendations that universities trial an ADHD coach on staff to assist with academic outcomes of ADHD persons (Parker et al, 2011). This could be a great alternative therapy to expensive services.
General practitioner knowledge of modern ADHD presentation could be tested to see if this perceived barrier to care that was identified by those with undiagnosed ADHD was through lack of knowledge, care, and treatment of the condition. Anecdotally, through support groups I am a part of, and with some data provided here, people have complained also that mental health professionals working in the field have little understanding also. These could be addressed within the same study.
Adult ADHD care in the New Zealand medical system is unacceptable. NZ is not following best health practices, and outdated understanding of ADHD is preventing those with the condition from getting treatment.The dangers of going undiagnosed and untreated is contributing significant harm to this community – racial minorities and women appear to be most at risk. A rapid response by health and education officials must be prioritised in order to prevent further harm, using modern breakthroughs in ADHD treatment to get people the help they need.
Three key recommendations are to upskill medical healthcare professionals, especially GP doctors, on modern presentation of ADHD, especially in women. There are great new tools to assist with symptom presentation to help with diagnosis such as the Mind Excessively Wandering Scale (MEWS) alongside the existing ASRS and WURS, which appears to be invariant between sexes, and can’t be masked as other symptoms can (Kooij et al., 2019).
Increase public healthcare availability and funding as a priority to address the needs of ADHD adults. Inaccessibility of diagnosis and treatment is preventing those with the condition from getting the help they need. People with ADHD are at risk of severe and lasting negative outcomes if undiagnosed or untreated (Hamud et al., 2015).
Run public media campaigns on ADHD. Show modern understandings of presentations of symptoms. Make use of existing resources that internet content creators have made to rapidly improve knowledge of the condition in the general public in order to reduce effects of stigmatization, and discrimination.
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Introductory statement for survey:
Who is this survey for?
The survey is open to all adults in Aotearoa New Zealand who suspect they have adult ADHD (Attention-Deficit Hyperactivity Disorder), as well as those with a formal official diagnosis. This survey is compiled and presented by me, Rory McCarthy, independently of any educational institutions or organisations.
What is the purpose of the survey?
Findings from the survey will contribute to a submission to the New Zealand Minister of Health. The intention is to provide a look at what our needs are and how well our needs are being met within the public health system in Aotearoa New Zealand.
Background and rationale
Since I was diagnosed with ADHD in 2013, I have noticed that in New Zealand, at least for adults, support and medical treatment beyond the prescription of stimulants are minimal, and education about how ADHD and medication affect day-to-day life has been absent or unavailable. There has been no public counselling (or very limited) for the damage that living with undiagnosed ADHD can do. I am dedicated to making sure that all ADHD services are improved for adults living with these conditions.
Further to this, I have discovered that nearly all people who had Adult ADHD had been diagnosed through private health care – meaning that this is a problem that is being addressed in a non-equitable way, and will not meet our obligations to Ti Tiriti o Waitangi.
I am looking to train as an Internationally Certificated ADHD Coach, and currently devote my time to raising awareness on Twitter of ADHD, as well as trying to advocate through officials for better ADHD support. In 2019, I became active on #ADHDTwitter and discovered that many young college students, comic creators and tweeters were able to communicate the experience of living with ADHD far better than medical staff I had dealt with during my time in the New Zealand medical system: the contributions of those with lived experience of ADHD are an essential part of improving service.
In order to provide data to our Minister of Health – Andrew Little, please consider filling in this survey.
All data will be anonymous and will be destroyed within 60 days of survey completion, after the data has been summarised. You can exit the survey at any time and your data will be withdrawn and should contact the survey creator, Rory McCarthy, if you wish to withdraw your data after completing the survey.
In some cases it would be useful to follow up via Zoom or other messaging platforms. At the end of the survey there will be a link if you would be open to being contacted. This data will be stored separately in line with all privacy practices. It will never be provided to a third party and will only be used by the survey creator Rory McCarthy to arrange further discussion if you would like to do so on this topic. This data will be destroyed at the end of the survey period also.
If you would like to receive a summary of the findings, please contact me at: [redacted email address]
Ngā mihi nui,
Rory McCarthy (ADHD Advocate, Researcher, and Educator)