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? Anusha Bradley reports.

Even when Ava* overdosed on her mother's prescription pills because she was "bored", her local District Health Board refused to assess her for Attention Deficit Hyperactivity Disorder (ADHD).That's when her family knew they had to try something different.

There had already been alarm bell moments: The time Ava suggested cooking the family cat; the time she went missing for nine days to party with friends; the times she was caught with drugs, crashed a car, or trashed the house in a violent rage. She'd also run away from class countless times and been suspended from school.

But all her mother Emma* could do was watch as her teenage daughter's behaviour continued to deteriorate: "She was running away all the time, fighting and throwing things around the house."

The lack of help and understanding was terrifying and frustrating. "It's the not knowing what to do. You're trying to do all these things with this kid, but there's just no help."

The behaviour was often blamed on "bad parenting", Emma says. Ava's GP saw signs of the condition and had referred her to their local DHB to be assessed, but the DHB refused to see her.

After the accidental overdose on her mother's medication when she was 14, the hospital believed Ava had tried to kill herself, so dismissed another of her GP's referrals for an ADHD assessment and sent her to counselling instead.

"I didn't do it because I was depressed. I wasn't sad, I was just bored," recalls Ava.

Following the overdose, help arrived - following four years of symptoms - when Emma paid for Ava to see a paediatrician privately, who confirmed the ADHD diagnosis in December 2020. "It was such a relief as a parent. I was like, this is not her just playing up and acting out every time she hears the word no."

Once she was on medication, there was an almost immediate effect. "It was like a switch," Emma says.

"That first day she said to me: 'It's like all the noise has stopped'."

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Ava is one of the "lucky ones," says ADHD New Zealand chairperson Darrin Bull. "Because she got a diagnosis."

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.

"If they're in a District Health Board that is not seeing patients with ADHD, then they become the lost, and they go into a crisis. Invariably, they'll end up somewhere in the public health system, whether it's dealing with depression or issues around mental health."

But there are barriers to getting a private assessment too, Bull says. "There's not enough private specialists and they cost a lot of money. As far as we're aware there are only two in the South Island, so that's a lot of the population who can't get help."

Patients who are diagnosed by a psychologist will often have to pay again to see a psychiatrist or paediatrician because only they are allowed to prescribe ADHD medication, and adult prescriptions must be reviewed at least every two years.

"That's a lifetime of cost," Bull says.

He says the survey identified some people who were so desperate for help they were resorting to the social media platform TikTok for advice. "There are some wonderful channels on TikTok and social media that's been really important for people to understand their ADHD and get some help and insight."

"What would concern me though, is if the social media platforms start to be the primary source of diagnosis."

More than half of survey respondents also reported difficulty in getting medication and Bull says giving psychologists and GPs prescribing powers would go a long way to improving access.

But GPs will need more training, he says. "Our survey found only 28 percent think their GP understands ADHD. Every one of the support groups I've been to starts off with a story about how much trouble they had with their GPs and how quite commonly they're misdiagnosed."

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Brody's parents thought he may have Oppositional Defiance Disorder or a Sensory Profile Disorder and they took him to play therapy, reiki, reflexology and changed his diet.

They were desperate. He had started complaining of wanting "everything to be quiet" at 8 years old. He was hypervigilant at school, before eventually withdrawing from class activities completely, or running away.

Even though he was one of the "lucky ones" seen by his DHB, several psychologists, despite nine months of assessments, were unable to spot the ADHD, diagnosing him with severe anxiety instead.

It was only when a Ministry of Education psychologist, who had been working intensively with Brody, suggested he be assessed again that he was finally diagnosed with ADHD in July last year.

"It was frustrating and relieving at the same time," says his mother Corinne.

"It had been five years of watching this kid struggle so much and not be able to help him. The fact it took so long to get a diagnosis - my heart broke. The whole process was so traumatic."

They also discovered the untreated ADHD had caused a decline in his cognitive ability over the past two years. "The only explanation for it - and God it hurt to hear it - was that Brody had become so lost, so disinterested and so cut off that he had lost completely every piece of self-worth. He had just switched off."

Brody has now been on ADHD medication for the past 18 months. It's taken that long to find the right drug and the right dose, but medication has made a huge difference.

"His school noticed straight away. He started excelling in everything, which was actually really sad for his teachers who had watched him struggle for so long," Corinne says.

"So he's doing really well, but he could have done well the whole time. There's just no resources for teachers or for families. It's really hard, I can see why people just give up."

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Auckland GP Dr Tony Hanne knows all about the "nightmare" that ADHD patients endure to get the help they need.

As one of only two family doctors in the region with a special interest in the condition, he provides diagnostic services and care to patients across the country. His patients must pay for a consultation with a psychiatrist every two years in order to keep receiving medication.

"I started in 1991 assessing and treating ADHD, and there were eight wonderful years where there was no government restrictions on doing this and on prescribing."

That changed when prescribing limits were introduced in 1999, following concerns about the misuse of stimulants often used to treat the condition. Hanne, however, worked closely with a psychiatrist colleague who prescribed medication following Hanne's diagnosis.

"This stopped when the psychiatrist retired in 2018. It has been a nightmare since then," Hanne says.

Now when he diagnoses a patient he has to refer them to a psychiatrist who does their own assessment as well. This assessment has to be done every two years so the patient can keep getting medication. "It is crazy because it's a lifelong condition and it adds a huge expense for the patient," Hanne says.

Besides, are psychiatrists the right doctors to help those with ADHD, he asks? The World Health Organisation's diagnostic resource, the International Classification of Disease 10, describes ADHD as a neurodevelopmental disorder, not primarily a psychiatric condition.

"The psychiatrists are made responsible [for assessing ADHD and prescribing medication to treat it] but they are not trained to do it and it is not really part of their territory.

"If left untreated it can have psychiatric consequences but very few psychiatrists have an interest in the condition," he says.

Research estimates around 5 percent of the population has ADHD but only 1-2 percent are diagnosed. In New Zealand it's estimated about 280,000 people have the condition but a further 20 percent don't realise they have it, Bull says.

"The results of this are disastrous," Hanne says, as he lists statistics: "The likelihood of spending a night in jail at some point in your life if you have ADHD is 20 times what it would be for everyone else. It is the impulsivity of ADHD, where you get an idea and then do it, then 'oops, shouldn't have done that'.

"There are also big consequences in academic underachievement, unemployment, substance use and relationship failure."

"People with ADHD have four times as many car accidents as those without. If you treat them you reduce that number very substantially."

Hanne says allowing GPs, with the right training, to diagnose and treat the condition would vastly improve patients' access to help. He also believes GPs are best placed to recognise any medication misuse and provide support.

"Once medication has been authorised, patients need a lot of close support in adapting to ADHD. This is best done by a GP who gets to know them well and can help them change life habits as well as supervising the right type and dose of medication."

This is an immensely satisfying part of his job, he says. "I have watched so many people be transformed for good in the past 30 years."

But Hanne, who is still working though he is well past pension age, worries about who will help his ADHD patients when he finally puts down his stethoscope. "They ask me and I don't know the answer. That's why I've pushed for a number of years now for this to change."

Hanne says he has raised these issues with the Ministry of Health five times over the last seven years without result.

"There is a resistance in the health bureaucracy to hearing what I'm talking about but what I'm saying is supported world-wide by experts."

The Ministry of Health said it recognises inconsistencies across DHBs in how they treat adults with ADHD and mental health issues.

It says its response to the Mental Health and Addiction Inquiry and wider health reforms will create a more joined-up approach across public and private health providers, and it is also working to put more counsellors in schools to help children and young people.

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It is true the "vast majority" of psychiatrists in this country do not have expertise in ADHD, Royal Australian and New Zealand College of Psychiatrists fellow Dr Sarah Romans admits.

She's one of the few that does but can count the number of colleagues on her fingers "who could claim to be experienced and confident in treating ADHD".

But they're trying to change this, she says. "There's a group of us that are particularly interested in ADHD which is pushing the College to improve the training and emphasise it more."

An ADHD network was set up 18 months ago within the College to tackle some of these issues. Despite the lack of training, Romans believes psychiatrists are well placed to help those with ADHD because patients with the condition often have other mental health issues.

Still, she endorses the idea of giving GPs, with the right training, prescribing powers. She is not in favour of psychologists prescribing, however. This is because ADHD medication can be "a little tricky to use" and it is best managed by those with medical training, she says.

The College is hoping to trial a programme that is currently being tested in Australia, which pairs GPs with psychiatrists so they can manage ADHD patients together.

"We're having discussions about it here, but it's two to three years off," Romans says.

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The New Zealand College of Clinical Psychologists agrees there's a problem with access to ADHD diagnosis and treatment.

Executive advisor Paul Skirrow puts it down to a shortage of psychologists, strict limits on who can prescribe ADHD medication and a mental health system under severe strain. "Even if you get a diagnosis privately, you still might have problems getting the medication," he says.

"Most psychiatrists work in District Health Boards and they're inundated, really, with referrals, so there's not a lot of space in the system other than to deal with emergencies, and often ADHD is not considered an emergency."

He's unsure if psychologists should have prescribing powers, but would like a more co-ordinated approach between all the different public and private groups that are involved in an ADHD patient's care, including the Ministries of Health and Social Development and Education, as well as private medical specialists.

"Sometimes it's not clear whose responsibility it is, so there's not a clear pathway for a lot of people on how to get a diagnosis and who supports them after they've got that diagnosis."

Some countries provide wrap-around services for ADHD patients with paediatricians, psychologists, psychiatrists, occupational therapists and even teachers all working together, he says.

"We need a proper joined-up approach."

That is something the New Zealand Disability Advisory Trust wants to see too. It is campaigning for both ADHD and Autism Spectrum Disorder to be treated as neurodevelopmental disorders rather than mental health disorders, and for them to be treated as disabilities and fall under the new Ministry for Disabled People once it is up and running in July 2022.

The Trust also wants GPs to be able to diagnose and treat ADHD. "The system is generally failing to pick up these diagnoses. It's an out of date approach," the Trust's service navigator Nick Stoneman says.

As a consequence those with the conditions often end up in the mental health system, which is already overloaded, he says.

ADHD New Zealand's survey found more than 70 percent struggled with anxiety, nearly half had been diagnosed with depression and just over half had sleeping problems that were all exacerbated by delays in getting a diagnosis, support and treatment for ADHD.

"That was actually a real shock to us. It was way higher than we envisaged," Bull says.

"These mental health issues come about not because they have ADHD but because they can't get the help they need."

It's an "incredibly neglected" condition, Bull says, but it shouldn't be.

"A person who has ADHD can have a completely successful life. The key to that is working with them when they're under the age of 18 in our school system. If a person with ADHD can be successful at school, it sets them up so well."

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The Ministry of Health acknowledges people with ADHD do not always get the help they need. "It is always concerning to hear that some people are struggling to access the support they need," a spokesperson says.

"We recognise that there has been some inconsistency across DHBs in the approach to supporting adults with mental health issues. This is one of the main drivers of the Health Sector reforms which will provide a more joined-up approach across government and providers to enable people to access a wide range of mental health and addiction services in their communities.

"The government's response to the Mental Health and Addiction Inquiry, wider health reforms and the development of Kia Manawanaui Aotearoa - a high level plan for mental health - takes an 'all of government approach' and will lead to more joined-up working.

"Submissions to amend or extend prescribing of methylphenidate would generally be received from the relevant regulatory authority, for example the Medical Council of New Zealand, and reviewed by the Ministry to inform any changes that may be required," the spokesperson says.

The Ministries of Health and Education are also working together to put more counsellors in schools to create "pathways to Mental Health treatment for children and young people".

***

Ava, now 15, has been on ADHD medication for just over a year. It's hard to reconcile the image of the out-of-control child she once was with a now shy and quiet girl who loves maths.

She doesn't remember much of those crazy days, she says, but she does remember feeling apathetic towards those around her and being unable to understand why people were so upset with her all the time.

"I just didn't really care. I didn't understand. When they would cry and stuff I'd be like, 'why are you crying?"

While Ava's made huge gains, she still struggles with large groups and her school has told her she can't return after being suspended, so she is studying by correspondence. "I miss school. I miss my teachers," she says.

Emma feels Ava's school put her in the "too hard basket" and there just isn't the right support in place for her return.

She also feels for families that don't know where to turn for help, or can't afford to pay for medical care privately. "I feel so sorry for people if you don't have the money to go private. People just get written off.

"You're labelled a naughty child, and then they grow up continuing to be just labelled a naughty adult."

She worries about what would have happened to Ava if they hadn't kept pushing to get her diagnosed and questions why it's so hard to get an assessment and medication. "There's just so many families out there that suffer."

Ava wants other kids who might be like her to know they are not alone, and she hopes they can avoid the long, difficult journey she faced to get help.

"I don't want others to go through what I did."

*Names have been changed

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Where to go for help:

ADHD New Zealand

www.adhd.org.nz

Email: info@adhd.org.nz

Phone: (09) 625 1754