Children with developmental disorders falling
through the cracks
A generation-defining disruption is how some have referred to the impact of COVID-19 on children with developmental disorders. Already facing a specialist shortage before the pandemic, health services have been stretched to breaking point as they struggle to regain lost ground.
For many children, this precious developmental time has been lost and will never be regained, placing a massive burden on families and healthcare providers. This burden, however, is not being spread equally, with excessive wait times often due to postcode being less of an exception and more the rule.
Australian and international guidelines recommend children wait no longer than three months for an assessment to find out the underlying cause of developmental delays. However, there are continued reports of families waiting, sometimes years, for the opportunity to consult specialists, and referral process guidelines often hindering the ability of families to receive appropriate assistance.
In a recent RACP Pomegranate Health podcast, Dr Paul Hotton, a community Child Health Paediatrician at the Children’s Hospital in Randwick and Chair of the Chapter of Community
Child Health at the College of Physicians addressed systemic issues around accessibility saying, “people are aware of the guidelines, but it hasn't actually changed clinical practice”. He added, “the whole concept of the guidelines is that you're picking one neurodevelopmental condition. And we know that with autism alone, there's a whole range of comorbidities and presentations of how they present. So it's quite a complicated system for people to understand”.
Even when assistance is received, there can be many constraints to improved outcomes. Sometimes it’s from families unable to dedicate the time needed - especially those in lower socio-economic groups - to medical staff who only have a single interaction with a patient so find it difficult to fully comprehend the patient’s issues. On top of that, paediatrics is often one small part of general practice, and developmental paediatrics is only part of paediatrics. For GPs who aren’t comfortable dealing with behavioural issues in paediatrics, this presents an additional challenge.
Massive disruption to training over the last few years has also impacted staffing levels, with regional and remote areas arguably suffering the most. However, there are no shortcuts to resolving staff shortages, with training generally taking seven and a half to eight years, allowing for interruptions and the fact that many physicians undertake a dual degree. It can take even longer to train someone to manage complex conditions such as developmental or neuro-developmental disorders.
We spoke to Dr James Best, a Nowra-based GP and RACGP representative for child and young person health, about his own experiences with these issues.
RACPQ. Looking beyond current staffing shortages, where do you think the most attention needs to be given to address positive outcomes for patients?
JB. First of all, there is the primary care level and the secondary care level. At a primary care, or GP level, their ability to deal with children with developmental and behavioural issues is being challenged. The requirements are increasing because there is an increasing identification of children with behavioural and developmental concerns. Now also in GP training in both graduate and postgraduate training, there is less exposure to these issues, and this is something that really does need to be turned around. We know, and we've got evidence that GP registrars, for example, have decreasing confidence in dealing with these issues and so I think there needs to be more focus on increasing generation skills to identify these issues and deal with them if possible themselves.
There are other workforce issues at a secondary level with paediatricians and psychiatrists falling into a big area of need, particularly for those servicing rural and remote communities. It’s to the point where it's actually at crisis level.
A third issue is the regulatory situation particularly with autism and ADHD. I think it's a bit obscene that the ADHD burden of management just simply cannot be met by specialist care. We do not have, and will never have the numbers, so that has to be shared with primary care. The regulatory issues around ADHD in terms of diagnosis and prescribing, including repeat prescriptions varies from jurisdiction to jurisdiction but they are all bad in the end. I think most paediatricians and psychiatrists would agree that they don't want to be seeing uncomplicated ADHD for repeat prescriptions. The regulatory situation is just adding a huge burden to an already stretched system and it's just not coping.
A third issue is the regulatory situation particularly with autism and ADHD. I think it's a bit obscene that the ADHD burden of management just simply cannot be met by specialist care. We do not have, and will never have the numbers, so that has to be shared with primary care. The regulatory issues around ADHD in terms of diagnosis and prescribing, including repeat prescriptions varies from jurisdiction to jurisdiction but they are all bad in the end. I think most paediatricians and psychiatrists would agree that they don't want to be seeing uncomplicated ADHD for repeat prescriptions. The regulatory situation is just adding a huge burden to an already stretched system and it's just not coping.
RACPQ. What do you think is driving the reluctance to make these sorts of regulatory changes?
JB. I think it’s political and that there’s a perception at the public level that ADHD is over-diagnosed, or stimulus is being overused or being used inappropriately, which is the opposite of the truth. The issue is that these medications are often very useful and underutilised. In some situations, particularly in adults, the regulatory requirements are bordering on absurd. The potential for misuse of these medications, or stimulants, is very small. It's there but it’s very small. That doesn't mean that every GP should be able to prescribe stimulants but it is causing such a stretch on the system that we need to involve primary care in the management of these conditions.
RACPQ. You mentioned in another interview about the growing level of discomfort within GP circles to speak about behavioural issues in children. What do you think is the best way to address this issue?
JB. Training and education – and that requires funding – particularly at the GP training and registrar level. We really need to focus on that because the number of GPs is dropping, so we need to make sure they have the skills to deal with issues that people may not be able to get specialist access for.
RACPQ. What would you like to see to happen to reduce the burden on regional and remote specialists?
JB. With staff we need to think more laterally. We need to think of shared care models such as the echo model where there's coordination between GPs and specialists managing situations and also doing case studies, case discussions, and helping to skill up the primary care in managing some of these complex issues.
I mean even access to general practice is becoming more difficult. I had a patient that had driven from Bega to see a GP because the wait in Bega to see one was up to a month. She drove three hours to see a GP in Nowra. That’s really bad and that’s for a GP, not even a paediatrician. About a quarter of our workforce is going to disappear over the next decade, so what's it going to look like in 10 years? Something really needs to be done and the government knows this. Australian Health Minister Mark Butler pointed out that the percentage of medical graduates becoming GPs dropping from 50 per cent to 15 per cent was terrifying – I think that was the word he used.
In response to this growing situation, in March 2022, the federal government’s budget committed to renewing the current specialist training program, however, it is argued that the program needs to be expanded to allow for more places and longer-term funding to ensure stability.
According to Global Health Education, “Governments are increasing funding, looking to overseas resources and partnering with universities to secure the pipeline of future health talent”. This includes incentives and policies to boost the supply of skilled healthcare workers and keep the healthcare system functioning well. The federal government is in the process of implementing its National Medical Workforce Strategy (2021–2031) across Australia.
The strategy aims to address medical workforce issues which includes three overarching contextual priorities:
- grow the Aboriginal and Torres Strait Islander medical workforce and improve cultural safety
- adapt to, and better support, new models of care
- improve doctor wellbeing.