GPs can be a lynchpin in ADHD bottleneck

Long waiting lists for patients to be assessed and treated for ADHD by specialists is fuelling frustration among GPs, prompting some to speak out.

By Cathy O’Leary

The referral system is accepted as a fundamental part of medical practice and a way of keeping GPs as the gatekeepers of patients’ sometimes complex health profiles and with some medical conditions such as ADHD, the referrals are essential to get a diagnosis and treatment.

However, patients hoping to be assessed are sitting on waiting lists for 12 months or more, or worst still, their referrals are rejected by specialists who have closed their books.

For some GPs, the growing frustration of not being able to help patients has bubbled over into the mainstream media, as some speak out about the lack of support and funding from governments.

Unlike in Queensland and NSW, WA GPs cannot provide a diagnosis or prescription of stimulant medication to any patient, no matter their age. The State’s public ADHD clinic treats only children, forcing adults seeking ADHD assessment and diagnosis into the private sector.

With no public pathway to diagnosis and even private psychiatry waitlists ballooning, some patients have resorted to going interstate to see specialists, while others have faced sharply increased fees to see a WA psychiatrist – a move which has raised eyebrows among GPs. 

Earlier this year, a survey on well-being and job satisfaction by the Royal Australian and New Zealand College of Psychiatrists found that 93% of psychiatrists believed the current workforce crisis was negatively affecting patient care.

Across all states and territories, many psychiatrists responded that they had experienced burnout, with the highest rate in WA, with 80%.

The State Government says it is working to fix the problem of the unprecedented demand for children’s health services across WA, and in April this year announced a near-$40 million funding injection.

Part of the plans include expanding the Child Development Service to increase staff including paediatricians, clinical nurse specialists, speech pathologists, occupational therapists, psychologists and audiologists in metropolitan and regional areas. 

Support group ADHD WA welcomed the investment but said children were facing unacceptably long wait times for both diagnosis and treatment, with some primary aged children waiting about two years to see a paediatrician.

GPs under the pump
Dr Andrew Leech

Dr Andrew Leech – RACGP WA’s GP of the Year for 2023 – is one of those challenging the status quo and looking for new ways to deal with demand and changing expectations from patients.

He says hundreds of GPs like him are battling issues around poor or unwieldy Medicare rebates, and increasingly high demand from families seeking an ADHD diagnosis.

“It’s been good to have a platform to advocate, because when you go straight to the government it doesn’t always lead to any change, so sometimes it’s a case of having to be bit louder,” he told Medical Forum. 

Part of the change in how Dr Leech works at The Garden Family Medical Clinic, based in Murdoch and Piara Waters, is to have a full-time child health nurse with a background in working at the Child Development Service, who can do a lot of the pre- and post-legwork for appointments.

Chloe Barber has only been working with Dr Leech for a few months but said families appreciated the continuity of care from a health professional who was familiar with their situation when they were feeling lost.

Dr Leech said this approach might not be for everyone, but it was how he had decided to manage a difficult situation for now. But his new model of care was not funded, so came at a cost.

“We know the families well and we’re able to do the standard screening tools and take a good history and speak to the schools if we have to, or to family members, and the NDIS and the Education Department are allowing more GP input in the revisions in autism,” he said.

“But with ADHD there is still this roadblock where GPs are not recognised as being able to even diagnose let alone prescribe.

“We’re seeing a lot of complex patients and some families going through really difficult times, with a wide variety of neurodevelopmental problems like the trend in ADHD and autism, as well as mental health challenges in families and children.

“With anxiety being at the top of that – trauma-based problems, issues around school bullying and social media, and we’re seeing a bit of eating disorders too.”

Dr Leech said everyone could be working to make the system more streamlined because there was not going to be an increasing medical workforce or a sudden change in the number of graduate paediatricians or GPs who were interested in this field.

GPs needed to be smarter in how they used nurses, for example, as well as the way they worked collaboratively with paediatricians to avoid having silos across different sectors. 

“Otherwise, patients become confused about who they’re meant to be seeing, and they get rejected by referrals, then they come back to us, and the whole thing starts again. It’s so much effort to get the help they need,” he said.

“Unfortunately, we’re in that cycle of not very good care at the moment.”

Dr Leech said GPs did not have time for longer consults and more complex paediatrics, so they had to refer, and not everyone was interested in this work anyway.

“The big issue is getting the support from the specialists and the hospitals, and while the government has announced funding for the Child Development Service, which is hopefully going to help, it will be medium to long-term before the benefits from the money are going to show up,” he said.

“We’ve advocated for GPs to be able to initiate stimulants, and I think that would be a gamechanger, and I know it’s very controversial because psychiatrists and paediatricians would generally feel that it is in their domain to be doing that, around safety, but we’re in different era now.

“We have a lot of people coming through wanting to know if they have a diagnosis of autism or ADHD, and GPs can do that, it’s not that hard to do that assessment and decide for them. For the more complicated cases, that’s when we need specialists, and we need them to be available to help those people.

“But now, whether they’re coming for an initial diagnosis or coming for a lot of different things, we can’t get any specialists for anyone, and most of the referrals are rejected.”

Fear of missing out 

Dr Leech said there was also a problem of patient expectations, because a lot of families came in expecting a referral to a paediatrician based on what their child’s school had told them, creating a fear of missing out.

“They say ‘we need that referral, we need to get on a list, the school says there’s trouble going on with the child’s learning’. We need to be cleverer in approaching that by doing other things and not just jumping on a referral.

“We definitely need education for GPs who are going to work in this role, who would potentially be doing this work in straight-forward cases and know when to refer. So there needs to be a bit of a shift in how we manage this area to reduce the burden on the tertiary sector and the specialists.”

Dr Leech said that GPs needed to be more empowered to help, just as they already have when dealing with conditions such as diabetes and chronic pain.

His practice has run a small pilot ADHD program with a paediatrician, doing a lot of the work-up and follow-up at the GP clinic. “What we were able to do with 20 patients, with the ongoing reviews, was done a lot quicker than the paediatrician could have been able to do,” he said.

Dr Leech and colleagues had put in a funding proposal to the WA Government several months ago to expand the program but had not heard back.

“I don’t think we’re going to become a ‘Stimulant State’, which is one of the comments I’ve heard from paediatricians, with Safe Script WA cross-checking our scripts with the State database to make sure we’re not overprescribing, or that patients are not abusing their medication, so the protections are there,” Dr Leech said.

ADHD, or not?

But he was concerned that some children were being sent in because they did not fit into the typical school model of sitting still, listening, focusing, and keeping up.

“Schools are also not coping with that style of learning, because they have large classes, so on the education side there are issues around the way they’re able to handle busy children, or those that don’t listen, and maybe disobedient children,” he said.

“The pressure builds for them to send the children in for funding and treatment and a label, so they can cope. This is some of the pressure on getting a diagnosis to help with learning, and it makes it a bit confusing sometimes, and we need to be careful about who gets treatment and look at what other options there are for improved learning for kids who might need more one-to-one support and different learning environments.

“The rise in ADHD is still unknown, and we don’t know exactly why we’re seeing it, and yes there are responsibilities around making a diagnosis, but some paediatricians make a very quick diagnosis and label a child.

“Part of my assessment now is not jumping to a referral, I’m not doing that anymore, this is a different way of doing it. We just spend a lot of time observing and reviewing each term and getting a feel for what is happening over time. 

“And for children in pre-primary and Year 1, there’s a lot of normal development at that age, with busy brains and kids who just can’t keep still, so the child needs a full assessment of their health. There are blood and iron tests that need to be done, and they need their eyes and ears checked, and that takes a while.

“A big problem is sleep. Many kids have very bad sleep apnoea so we can go ahead and treat it, and there’s nothing more rewarding than finding that they can regulate better, they’re concentrating better, and their energy is back. 

“We have the ability as GPs to do that, to really tick off things.”

The way ahead

Dr Leech said GPs needed more support and funding options from the Government because many could not afford to hire a nurse to make it work better.

“We need education and funding for us to train large cohorts of GPs who are interested in this work and get them onboard. And those longer item numbers are helpful, but obviously Medicare is still behind, and out-of-pocket costs are still higher for patients,” he said. 

“But these are the solutions, including the regulations for prescribing, and they’re achievable quickly – even just a relaxing of the rules.

“It doesn’t have to be a free for all that everyone can prescribe – just something that gives us a bit of room to work with families while they’re waiting, even a starter script to get them on their way.”