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.
Emma Livingstone, CEO of UP – The Adult Cerebral Palsy Movement, will share insights from her lived experience and advocacy work on the evolving care and understanding of cerebral palsy (CP) across the lifespan. Her presentation will explore recent research advancements, the lifelong nature of CP, and the importance of addressing co-morbidities. She will also discuss how child practitioners can better equip children with CP for adulthood.
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.
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.
The approach and attitude towards Functional Neurological Disorders (FND) has changed over the last decade and anecdotally at least, we seem to be seeing more cases in our day-to-day practice. Patients with functional symptoms present to many disciplines and functional symptoms can co-exist with organic pathology. There is now evidence to show earlier diagnosis and treatment can lead to more positive outcomes.
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.
In three parts, this Grand Round intends to describe the significant developments in the management of musculoskeletal conditions associated with cerebral palsy. First, the critical role that the Victorian Cerebral Palsy Register (VCPR) has played in epidemiological research, clinical research, and public health policy will be outlined. The second section will discuss technical developments in the management of Neuromuscular Hip Dysplasia, including novel imaging techniques and new aids for surgeons when considering surgical treatment. The final section will focus on common gait problems in children with cerebral palsy, as well as novel treatment concepts
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.
