This Grand Round highlights the experience of people with disability in healthcare. Drawing on her own journey and patient stories, Hannah explores the barriers created by inaccessible communication and bias, and the impact these have on wellbeing.
Children with developmental disabilities often present to hospital with behaviours of concern, creating complex challenges for emergency departments, inpatient units, and community teams. These behavioural crises can be distressing for patients, families and staff, and can strain hospital resources – yet they also offer powerful opportunities for system change.
Advances in medical care and changes in societal expectations have resulted in different patterns of survival for children and adolescents with severe neurological disability. Increased longevity, new and unseen multi-morbidity, and access to an increasing array of new and often invasive interventions offers significant decision-making challenges to children, parents, and clinicians. Sometimes it is not clear if we are helping or harming.
In the last decade, we have seen genetic therapies leap from the benchtop into the neuromuscular clinic. This process is most dramatically illustrated by spinal muscular atrophy (SMA), which was until recently the most common genetic cause of death in infancy.
Healthy Trajectories is proud to bring a celebration of the International Day of People with Disability (IDPwD) to Grand Rounds at The Royal Children’s Hospital. In line with our vision for an inclusive Australia, we will share what we and others around the Campus have been doing to authentically involve young people growing up with a disability, and their families, as partners in research.
Olivia is a 14-year-old girl from rural NSW who was diagnosed with Pre B Acute Lymphoblastic Leukemia (ALL). The treatment is long and arduous, but if treated immediately has a 90 percent survival rate. Without treatment she will die within four weeks. Olivia has other conditions including epileptic encephalopathy (DEE), a severe intellectual disability, global developmental delay, communication difficulties, drug-resistant seizures and behavioural difficulties. The cancer therapy would require Olivia to have over 50 general anaesthetics as she won’t accept treatment without being restrained.
What does disability care for children and young people look like in 2023, and what could it be like in the future? In 2023 it is more holistic, more funded, more early intervention, more complex, and more positive for children and their families.
Scientific advances now allow researchers to identify, isolate and engineer stem cells. reNEW aims to deliver treatment outcomes across the breadth of stem cell medicine – new drugs based on human stem cell models, new tissue therapies, and new cell and gene therapies. We look forward to presenting how stem cell medicine and reNEW are advancing treatments for delivery into the clinic across many currently untreatable diseases.
Meta-analyses show that medication is an effective treatment pathway in children and adolescents diagnosed with ADHD. These medications are also commonly associated with a number of side effects and risk factors for other conditions, which are less well understood by practitioners. This Grand Round intends to balance understanding of the efficacy of ADHD medication with the potential risks, and provide evidence for the safety of ADHD medication prescription in clinical practice.
Our Healthy Trajectories research is done in partnership with consumers, clinicians, and researchers with diverse disciplinary expertise. Our goal is to contribute evidence to rapidly improve the health, wellbeing, and participation of those with child-onset disability and their families. We will only be able to ensure that people with disability can participate as equal members of society if we collaborate effectively across disciplines and sectors: we invite your involvement.
