Life for people with ADHD brains got a little easier this month, with changes to the way psychostimulant medication - used to treat ADHD - is prescribed.
Those diagnosed with ADHD have needed Special Authority approval granted by a specialist before they can start on medication. This Special Authority then had to be renewed every two years for adults and every year for children.
But the removal of this requirement means once a specialist has given initial approval for medication, a GP or nurse practitioner can then continue prescribing without further renewals, which could be costly and involve lengthy waiting times, needed.
And it appears there’s more to come.
It is likely that by June next year GPs with a special interest will be able to diagnose ADHD and prescribe medication for it – something only psychiatrists are currently allowed to do. Such a move would take the pressure off overstretched psychiatrists and mean easier, and likely cheaper, access to diagnosis for people who want it.
Although details are still to be confirmed, medical professional bodies and government officials are thought to be discussing a model that would have groups of specially-trained GPs overseen by a psychiatrist.
For ADHD NZ spokesperson Darrin Bull, the changes are the fruit of more than a decade of advocacy. They come alongside a landmark documentary, ADHD: Not Just Hyper, which Bull describes as “a beautiful documentary, so real – and what I really love is that it isn’t a victim story. I really just love that it’s a New Zealand story. ADHD affects thousands of New Zealanders, who are our family, friends and workmates. This documentary goes such a long way to help us all understand and appreciate ADHD in New Zealand, and reduce the stigma.”
The Listener spoke to Bull, who has diagnoses for autism and ADHD and whose day job is as a professional, about the realities of ADHD in Zealand.
You’ve been advocating in this area a long time now and it’s 14 years since you became the chair of ADHD NZ. Why do you think things are finally starting to move?
I think there’s a much better understanding of ADHD in New Zealand and the impact of undiagnosed or poorly-managed ADHD. While there’s scant research in New Zealand, overseas research in the OECD Western countries, for instance in Canada, shows adults with unmanaged ADHD are four times more likely to commit suicide. I’ve been quoted in the media as saying it’s just one giant own-goal. If you get on top of it early, the impact on people’s lives is much more positive.
One of the roadblocks all along has been the fear of diversion of the stimulant meds. How big a problem is that, really? [Diversion is the official term for the supply of medications to anyone who has not been prescribed them.]
It’s negligible. The process to get the special authority [rule] changed, that took us eight, nine years. And when we started our first work with the government a couple of years ago, the police were fully on board. They were saying there is no issue with this.
I also wonder whether some of the people who are getting diverted medications are actually people who probably need them anyway.
Yes. Because it’s been so hard to get medication. Especially if you forgot the special authority process, sometimes you’d be looking to get diverted medication. That was often the case.
Is there still a stigma? When I wrote my Listener story last year, two of the first people to message me were a journalist and a writer who are both quite well known, but weren’t “out” as ADHD.
There is a real stigma, and it’s a whole world of misinformation there. I actually have a “Hate Darrin” Facebook group, where they track me in the things I talk about with ADHD and get together and abuse me. I’ve joined under a different name, so I know what they say. It’s only got 80 members.
So, there is a stigma and it’s multi-faceted and it’s confused. What the stigma does is stop people with ADHD and their friends and family having honest conversations and getting the help and support that they need. And what we’ve started to see is the stigma reduce over the last four or five years. A lot of good media stories about people with ADHD have come through. What worries me is that we’ve seen, in the UK in particular, a backlash against ADHD, and that stigma will start to increase again.
Oddly enough, the two people I’m talking about, the issue for both of them was that they hadn’t told their mothers! Which does suggest that part of the issue is actually in families.
Oh, most definitely. I can speak for myself, because my children are ADHD, and my mother, their grandmother, is one of the people who doesn’t understand it or want to understand it. They think of it as a parenting issue and that’s where the stigma starts. It’s the old way versus the new way: young teenagers getting out of control, you can’t blame ADHD, it’s just no discipline. It’s that sort of stereotype.
The “excuses” thing happens to adult ADHD people as well. Rachel Jean, the producer of ADHD: Not Just Hyper, says her big hope is that it will start new conversations in families, but that potentially puts even more pressure on a system not designed to cope, doesn’t it?
Yeah, correct. And especially since 2020 with Covid, when a whole stack of people started to realise their children might be ADHD, the system isn’t coping now. However, we think the change to the special authority process will potentially free up thousands of specialist appointments across New Zealand.
The last time I looked, there were 45,000 people on medication – and at any time, we think 15,000 people would need to see a specialist to get their special authority renewed. Now that’s gone, that’s a huge number of hours for specialists to focus more on diagnosis.
My impression is also that treatment guidelines have really improved in recent years. I read the How to Treat article on adult ADHD by Dr Sidhesh Phaldessai that was published in New Zealand Doctor earlier this year, and I thought that was really good. It was a real move on.
The science behind treatment has really moved on. The Australasian ADHD Professionals Association, funded by the Australian government, spent five years writing the world’s best guidelines for the treatment of ADHD and the advantage for New Zealand is the Royal Colleges of GPs and psychiatrists are pretty much the same bodies across Australia and New Zealand.
So, most of our medical professionals at the high level in this area have worked on it. Our plan is to continue to work with the medical bodies and to introduce those guidelines formally to New Zealand. The big piece of work is that there’s part of the guidelines that are for the indigenous aboriginal people of Australia, and so there’d be a need to update that for Māori, Pacific Island and Asian people in New Zealand. But the understanding of ADHD over the past few years has gone through the roof. I’ve been involved with ADHD New Zealand for a long time and if you go back a decade ago, I was trying to convince people that girls got ADHD. Now that’s just accepted.
Am I right in thinking that the Royal College of Psychiatrists’ guidance was formerly that psychostimulant medication shouldn’t be prescribed if the patient admits to illicit drug use? As the Drug Foundation recently pointed out, drug use is a common consequence of unmanaged ADHD.
Yes, I believe it was. And I still talk to members of our community who are finding they can’t get ADHD help until they’ve sorted out their drug issues. That’s just misinformed, and there’s a much better way of looking at it, holistically. It’s important to remember it’s multi-modal, which means it’s not just about medication. The vast majority of New Zealanders have been diagnosed or could have ADHD aren’t prescribed medication.
I do think that one thing that’s been helpful is the rise of the ADHD coach, which was a sort of controversial idea for a while. But it does seem that working with someone with lived experience can be really helpful.
Absolutely. I have a small conflict of interest here. In my spare time, I’ve helped form an online ADHD coaching service called beehyve.health, with a friend of mine who lives in Seattle – he’s big into tech but also has ADHD. In the US in particular, ADHD coaches are actually the preferred way to go, as opposed to counsellors or psychiatrists. It’s commonly accepted and in the US, the good coaches have qualifications and are monitored. It works really well. What we’ve done is set up this online company where we match someone, an adult with ADHD, with a coach, and then it’s all done online, with an underlying medical practice underneath. I think we have about 100 [clients]. It’s only been going two years. I wouldn’t say it’s not-for-profit, but it’s not making any money and it’s not intended to. We’re close to break even. What we’re finding is that there’s a whole stack of people who don’t know where to go – and next thing you know, they’ve talked to someone from the community who’s qualified as a coach and it’s really worked magic.
Is that the difference between presenting with a problem to be treated and just seeking good strategies?
That’s exactly what it is. I’ve always described coaching as like teaching a person to fish, and everyone’s got different life experiences, so they can build on that and can talk about things that have worked. My son goes to it. He’s at university and he met someone who said, don’t stress about universities. Make sure you exercise and listen to every lecture on your headphones as you walk around the place: move and listen, don’t just sit down and watch and take notes. And that’s really worked for him.
At any time, we think 15,000 people would need to see a specialist to get their special authority renewed. Now that’s gone, that’s a huge number of hours for specialists to focus more on diagnosis.
Which is quite simple advice! I feel that personally I’ve been able to adapt and largely do things I’m good at in my life. But every time I look at the local Facebook groups, I do see people in real distress. What needs to happen for those people?
Being distressed is caused by a number of things. First of all, the education system. I often see people in their 20s and 30s who’ve under-achieved through high school and primary school and actually still have scars.
There’s research underway in the US looking at the way the education system treats neurodiverse children, whether it creates PTSD – and certainly, as a parent for my son, I think we have PTSD through his process. In New Zealand, once you realise you might need help, you are more likely to get diagnosed as depressed, and you’re treated in that vein and it doesn’t work. So then you start to spiral, and it can be really hard to get out of.
In my arguments and discussions with government, I say that the psychiatrist is better deployed to people whose ADHD has become complicated and interspersed with mental health issues or drug and alcohol issues. And that’s where I’d rather have those specialists work, as opposed to doing a simple special authority review.
We’ve also had the suggestion recently that we should be concerned about over-diagnosis, or over-prescribing, and that meds are being handed out too readily.
I just laugh at that. We know from the New Zealand Medical Journal research on prevalence and treatment that New Zealand’s rate of prevalence was roughly the same as other OECD countries, at 6-8%, but the treatment gap is huge. We’re well behind the rest of the OECD. And that includes countries with bigger barriers – with the recent changes here, the UK and Australia, arguably have much harder barriers to get access to treatment.
What does a future society in which we do have our heads around neurodiversity look like?
Fundamentally, it’s accepting people who are neurodiverse, accepting them for who they are, without trauma. And while it’s great to have improvements in the health system, which are significant, ultimately, it starts at the education system. And if you’re successful in education, then everything else falls into place.
When I started with ADHD New Zealand, I thought the education system would be easier to fix, yet it turns out the health system is easier. But really, if we’re going to get a positive outlook where people are living to their potential, it starts with the education system.
ADHD: Not Just Hyper screens today (Monday, December 16) at 7.30pm on TVNZ 1.
