A psychologist and a general practitioner – who happen to be mother and daughter – have teamed up to find a new way to help children with ADHD who face long waiting times for specialist care.
By Cathy O’Leary
Perth-based Grace da Camara and her daughter Dr Madalena Bennett can relate to the frustration of families trying to get professional help for children with ADHD.
Grace’s son – the youngest of her four children – grew up with ADHD in South Africa in the 1990s, and although he is now aged in his 30s, she still remembers the ripple effect it had on her young family at the time, including Madalena, her eldest child.
Their personal experience went on to spark professional interests in the health sector but down different paths – Grace in her capacity as a psychologist and Madalena as a GP.
They decided to think outside the box when it came to supporting families affected by ADHD, and the result is an Australian-first resource – a series of three workbooks designed to provide accessible and practical help to families with children who have the condition.
Grace has long specialised in working with children, adolescents, adults and families affected by ADHD. She developed OnTrac, a cognitive behaviour therapy-based group program for tweens and teens, delivered through ADHD WA in collaboration with third-year medical students from the University of WA who chose OnTrac as their services learning project.
Madalena works in general practice, with a strong interest in mental health and a focus on a multidisciplinary approach to treatment. She regularly advocates for more education on ADHD for mental health professionals, including GPs.
She graduated from the University of Cape Town in 2006, and moved to Australia in 2010, initially working at Sydney Children’s Hospital, before moving to Perth where she has worked in general medicine, aged care and mental health care before training as a GP.
Madalena works with the RACGP’s specific interests ADHD, autism spectrum disorder and neurodiversity group, and has been involved in upskilling GP colleagues.
While the workbooks do not replace specialist care, they are an option for helping children aged seven to 17 and their families while faced with long waiting lists to access an ADHD specialist paediatrician or psychiatrist in the metropolitan area, with even longer queues in rural and regional areas.
Another option
While the workbooks do not replace specialist care, they are an option for helping children aged seven to 17 and their families while faced with long waiting lists to access an ADHD specialist paediatrician or psychiatrist in the metropolitan area, with even longer queues in rural and regional areas.
The workbooks – written under the banner What Lies Beneath Matters – were initially Grace’s idea, as she had already worked extensively in the field of ADHD.
“As a mother who had a child with ADHD, I became a psychologist with a keen interest in the condition, and then over time I realised there wasn’t a lot of Australian resources for ADHD, and most of them were American.
“When I started volunteering at ADHD WA back in 2008 when we emigrated, I also realised that a lot of the issues I faced as a parent back in South Africa, many parents were facing the exact same things in Australia, so the seed was planted back then.
“Madalena was 10 years older than her brother, so she had seen the impact that ADHD has on families – it’s not just the person who is affected.
“So, we decided we could combine our two interests – as a mother-daughter team – because she comes from the medical perspective and I come from the psychological perspective.”
Initially, the OnTrac program was delivered with the aid of worksheets to 10 children in a group. They would often leave their worksheets behind after sessions. Grace had the idea to create a workbook to keep the child’s progress in one place and connect their progress back to parents and carers and the child themselves.
Over the years, Madalena watched her mother struggle with “lots of pieces of fantastic papers” that she regularly presented at forums, so she also saw value in finding a way to formalise the resources to make them more accessible.
She became Grace’s sounding board, looking at the practicalities from a general practice aspect, with many patients presenting with ADHD but not being able to necessarily afford or be able see someone immediately.
Helping GPs help
“It was looking at how GPs could use some of these resources within their appointment time, and bring patients back and assess them for ADHD, and then put little plans in place based on their symptoms of ADHD, in the primary care setting,” Madalena said.
“It’s really challenging, and being in contact recently with a developmental paediatrician, he can hear the angst in families’ voices but he’s only one person, so we’ve been trying to collaborate with GPs with pre-assessments to try to offload some of those reviews, and open him up for new diagnoses.
“But it’s not a space that is easily accessible because GPs aren’t able to prescribe or change dosages, and there’s a medication shortage at the moment too.
“Only yesterday I had someone who can’t get their medication and can’t afford to go back to the psychiatrist, so they asked me to change their script, but I had to say I couldn’t.
“It’s cost-prohibitive and there’s so much of a waiting list, with GPs trying to fill that gap but our hands are often tied. And medication isn’t the only answer – for some families it is a quick fix but it doesn’t fix everything.”
Madalena said that in specific patients who had co-morbidities, often their medication helped them to navigate day-to-day life.
“We (GPs) have got the knowledge but often we can’t use it, but hopefully there will be some new things coming up, so GPs could upskill in certain areas to work with mild symptoms of ADHD which we could at least help and manage while people are waiting for specialist care,” she said.
“Because these books are manualised, as long as you have a background and understand ADHD, and the child has ADHD, you can see where the difficulties lie, and you can tailor your sessions with the family.
“Not every GP will want to do this, but some will, and it will share the load while everyone is under the pump.”
One of the workbooks is a combined workbook for children aged 7-10 and their parents, while a second is for tweens and teens, and the third is for their parents.
The self-help workbook for younger children and their parents is part of the OnTrac ADHD program, based on Grace’s work with children with ADHD in individual and group settings.
The teenagers’ workbook presents a cognitive behavioural approach to managing ADHD, whether used in the OnTrac program or as a standalone resource. Three modules cover psycho-education, adaptive thinking and practical coping skills.
Many teenagers did not want their parents to attend the program with them, so the parents’ book helped equipped them with knowledge so they could support their children.
Grace said it was often a challenging space to work in because there was “more to ADHD than met the eye.”
ADHD was often only seen as a behavioural issue, with hyperactivity, impulsivity and distractibility.
“Every presentation is unique, and there are so many co-morbidities. I wanted to include as many as I could, based on my one-on-ones, and also on research, and adapted to suit the different age groups,” she said.
“What people don’t see is that those behaviours are usually the result of the internal experiences and symptoms that are not visible.”
The pair were in talks with a range of healthcare organisations in WA and had made information about the workbooks known to the WA Health Department but had not received any commitment.
They still encountered people who “weren’t sure how much of ADHD is real” and that was challenged in many of their forums and discussions.
“We know these workbooks are something that could be rolled out very easily in the school system or in Health but there’s a lot of red tape and hurdles to jump over,” Grace said.
“We also know the wellbeing of the whole family is at stake if families can’t get support. ADHD impacts on relationships, communication and emotions.
“Our hope is that this series, with its strong psycho-education component, will not only help the individual with ADHD, but also help their family members and friends who face many challenges when they’re supporting their loved ones.”
ED: The workbooks are available from UWA Publishing at www.uwap.com.au and bookstores.