There are three different types of attention deficit and hyperactivity disorder (ADHD), and it is thought about one in 20 New Zealand adults live with it. Photo: RNZ/Vinay Ranchhod
Systemic problems in the health system are 'creating harm' for many with ADHD, but recent developments mean the stage is set for that to change, an advocate says.
ADHD New Zealand chairperson Darrin Bull told Nine to Noon the system was difficult to access and financially prohibitive for those who go private. But he was hopeful changes could be made to remove the current barriers to diagnosing and treating the condition in New Zealand.
An estimated one in 20 New Zealand adults live with attention deficit and hyperactivity disorder (ADHD), and about 37,000 New Zealanders are on Ritalin or other similar drugs.
Bull said the problems were most profound within the regions, where there was a lack of psychiatrists and clinical psychologists needed to diagnose ADHD to allow the sufferers to access potentially life-changing medications.
Bull's comments come as Dr Tony Hanne, a GP accused of breaking the rules on prescribing ADHD drugs like Ritalin, gave evidence at his own disciplinary hearing this week, and said that if he did not act, hundreds of patients would have missed out on critical care in an overburdened health system.
A diagnosis and a prescription for drugs to help ADHD could only be made by a psychiatrist for adults, while a psychiatrist or paediatrician were needed to diagnose it for children.
Bull said the current system was creating harm due to a chronic lack of resources to meet the needs of people who wanted to get a diagnosis and treatment, and it must be fixed.
Recent figures suggested a wait of 6 to 9 months to get assessed, depending on location.
And research carried out last December by ADHD NZ suggested five district health boards were not offering adult assessments at all, Bull said.
"The people in those areas, particularly the South Island, had a longer wait for children of ADHD ... Research suggests it's around three to five months," Bull said.
The group's research also showed that of those seeking a diagnosis and treatment, 55 percent of adults and a similar percentage of families with children had to go private.
"The average price to go private is $1400, but the range can be from $1000 up to $3000, and there's additional costs," he said.
There are three types of ADHD - the impulsive and hyperactive type; the inattentive and distractible type, and the combination of the two.
The ADHD inattentive type was made up of 90 percent women, and their issues are not always obvious until they enter their 20s, he said. This was the reason advocates wanted all children tested for neurodiversity and learning disorders in primary school, to help identify challenges and provide opportunities to help people better.
Bull wanted urgent changes made within the healthcare system, which he said was 20 years out of date in terms of the science, as well as being hugely under resourced.
"There's a number of problems," he said. "It's very hard to get a diagnosis, and that is simply because there's not enough resources.
"If you're an adult you need to see a psychiatrist, [for a child it's a psychiatrist or] a paediatrician, and we know how much pressure the mental health sector [and] the health sector is under. So right now it's even harder to get a diagnosis.
"The other issue is pathways. Full support is very inconsistent. Even in Auckland there are long wait periods to see someone to get the help, the coaching, the counselling that you might need once you're diagnosed, and then access to medication is too hard.
"Medication in New Zealand for ADHD - lots such as Ritalin and Concerta is operated under a special authority. Now this is when a psychiatrist, [as an example, is needed to] prescribe some medication.
"So first problem, you can't get to psychiatrists - but under the special authority process, every two years you need to go back for a check-up.
"And if there's a shortage of psychiatrists, if you can't get an appointment, you can end up going for six to nine months without your medication - [it] can be a real problem."
Bull's organisation, ADHD NZ, was involved in a health sector hui on 22 August last year, involving dozens of organisations, including the crown drug-buying entity Pharmac and the Ministry of Health.
He remained hopeful that what was agreed there would translate into action.
It was agreed that changes to how ADHD drugs were administered were needed, as well as the need for a consistent model of service across the country.
"So, whether you're in Invercargill, Wellington, Auckland or Northland, you can have the same access to diagnosis and support across the country, using the same diagnostic criteria," Bull said.
"And as part of that, we're advocating adapting new medical practice guidelines in line with what's just happened in Australia."
Australia has updated the diagnostic criteria, with the Royal Australian and New Zealand Colleges of Psychiatrists taking a more holistic approach to helping people with ADHD.
"It doesn't just have to be medication. There's many other ways that can be effective as well," Bull said.
He believed the ongoing tribunal hearing of Dr Hanne had put the reform issue firmly in the spotlight.
"I think what the tribunal highlights is that the sector largely agrees that the special authority process in particular, for ADHD medication, needs an overhaul," Bull said.
"It's all very well to have guidelines and a process. But if you can't deliver or meet to demand, you're going to create harm, and certainly we are aware of the harm. And what that means is a person who can't get a diagnosis or can't get access to a check-up, and then they miss out on the medication.
"It can create some real mental health issues and create harm."
Entrepreneur Megan Hutchison was recently diagnosed with ADHD.
The former lawyer told Nine-to-Noon that getting a diagnosis had been a vindication for herself, after feeling guilt for struggling and 'failing' to achieve over many years.
"My career before my business was as a lawyer, and there were so many elements of that which I really struggled with," Hutchison said.
"I harboured a real guilt about leaving it because I'd spent my whole life saying: 'I'm going to be a lawyer', because people had told me [I'd] make a good lawyer. And then I didn't make a good lawyer, at least not in my own mind, because I wasn't good at the nitty gritty of it."
Living with the condition had been an ongoing struggle, she said.
"I'm not sure what the cost has been of having it. There's certainly been things - especially as an entrepreneur - that I really, really struggle with. And as an adult it's just how many forms you have to fill in. And I can't - I cannot focus on things like that. My husband has [done] so much of that sort of life admin for me."
Bull wanted GPs to play a more active role, being the first port of call for any review of treatment, instead of being sent back to psychiatrists, when there were very little available.
"We'd certainly encourage more GPs to understand ADHD - our surveys suggest only 23 percent of GPS understand ADHD - and for them to play a more active role.
"But it's a whole-of-system response required. It's not just 'fix GPs and get them more involved'. That won't solve it."
Minister of Health Andrew Little attended last year's hui and was briefed on the issues, Bull said.
"It was probably the most significant step forward for ADHD in New Zealand for 20 years," he said.
"I'm really positive about what can be announced over the next year to 18 months."
A Ministry of Health spokesperson said officials had started working with ADHD New Zealand and other agencies, including Pharmac, Te Whatu Ora, and Whaikaha, to determine what could be done to support people with ADHD.
"Although this work is still in the very early stages, it will ultimately help people access early diagnosis and consistent treatment, which is key to lessening the impact that the condition has on people with ADHD.
"The Misuse of Drugs Regulations require Ministerial Approval, an authority delegated to Medsafe, for the prescribing of ADHD medicines such as methylphenidate and dexamfetamine, both of which are Class B controlled drugs.
"Medsafe has issued ‘blanket’ approvals that enable specialists, including psychiatrists, to initiate these treatments for a patient. Other medical practitioners, such as GPs, can then prescribe to a patient under the written recommendation of the appropriate specialists.
"Some of these medicines, such as methylphenidate, carry the risk of misuse and abuse. This is an ongoing challenge in many countries, including New Zealand.
The prescribing restrictions on these medicines help minimise this risk of abuse and misuse while also supporting access to patients who need them."
