Mater is revolutionising epilepsy patient care in Australia, appointing Queensland’s first dedicated speech – language pathologist to its Epilepsy Unit who will help fine-tune diagnosis and treatment for patients.
The innovative care model is part of Mater’s strategy to broaden the holistic approach to patient-centred epilepsy management by incorporating specialist speech-language assessment in the pre-surgery care plans for epilepsy patients.
Mater is the largest not-for-profit healthcare provider in Queensland, running 11 public and private hospitals across the state and its own world-leading medical research facility – Mater Research.
Newly appointed Mater Speech Pathologist and The University of Queensland PhD candidate, Aoife Reardon will also use the opportunity to conduct clinical research about the benefits of the program, with the aim of developing national best practice guidelines for the treatment of epilepsy patients.
“Neurosurgery is often the only option to help patients with epilepsy achieve seizure freedom if their seizures have become medication-resistant (refractory), but surgery can come with the risk of damage to parts of the brain responsible for speech and language,” Ms Reardon said.
“Patients with epilepsy will often report language difficulties, but this area of epilepsy care hasn’t been well explored.
“Our team’s research indicated that speech pathology assessment was underutilised as a diagnostic tool, as patients with epilepsy were not routinely seen by a speech-language pathologist. I’m excited to join the Mater Epilepsy Unit to ensure patients living with epilepsy have access to these vital diagnostic and management services.”
Mater Epilepsy Unit Epileptologist and Leader of the Epilepsy Research Group, Dr Lisa Gillinder proposed the current project at Mater and will concurrently supervise the language research in collaboration with UQ and QUT.
“While Mater patients receive the best-practice treatment from epileptologists, neurosurgeons, neuropsychologists, clinical psychologists and psychiatrists, it’s important we stay at the cutting edge of treatment and incorporate innovative practices,” Dr Gillinder said.
“Epilepsy results in many symptoms in addition to seizures, including language dysfunction. The specific symptoms depend on which brain region the seizures are arising in, so a detailed language assessment can aid in pinpointing these areas.
“Aoife’s appointment means our patients will now undergo more consistent pre-surgical testing and we expect this will improve their outcomes. Our research on pre-surgical language mapping will have the added benefit of giving us an even greater insight into the different networks involved in language production and enable us to better predict where seizures are coming from. Our ultimate goal is to optimise surgical approaches that preserve language function, while still achieving seizure freedom.”
Mater head of Speech Pathology Lucy Lyons said being able to communicate was important for emotional and social wellbeing, and Mater was committed to facilitating the best possible care for Mater patients with communication impairments who need it – including those with conditions such as stroke, dementia, and epilepsy.
“Speech Pathology assessment and treatment is not a one-size fits all science, and Mater wants to reflect that in our offerings. Our team provides care for infants who are having difficulty feeding (e.g. due to cleft lip or palate, prematurity) right through to adults who experience communication and swallowing difficulties due to stroke, respiratory disease or cancer.
“Epilepsy is a newer field of Speech Pathology practice and as such, we are still learning about the best ways to assess and treat patients with language deficits due to epilepsy. Each person with epilepsy is unique and their language profile, including their strengths and weaknesses. Ultimately, our goal is to work with each patient individually to assist them to communicate with their family, friends, and colleagues confidently and successfully.”
Problems with speaking and vocalising her thoughts are some of the most frustrating aspects of 23-year-old Karly Jol’s epilepsy, apart from the seizures.
Karly, who is a patient at the Mater Epilepsy Unit, first started experiencing epileptic seizures from the age of five. It took several years for her condition to be diagnosed, but when it was, the doctors identified the seizures emanated from the language associated parts of her brain.
“Sometimes I just can't get my words out and, sometimes I feel like people think I might be really dumb, or they just lose interest in what I'm saying. This doesn’t make me feel very good in myself,” Karly said.
“Aoife is giving me tools and ideas of how to get around that. For example, if I can’t spell a word she’d suggest thinking of a similar word and using my memory association to come up with the letters – triggering the correct spelling,” she said.
“I also did sessions before my surgery so the surgical team could work out, according to how my speech, language and memory were affected, which parts of the brain were affected by the epilepsy.
“The speech therapy is really helping change my life. It gives me some confidence again and I don’t feel as ashamed about having it. Sometimes it's hard for people to understand what's going on with epilepsy especially as it can come in many forms and not everyone falls to the ground with it.
“I didn’t tell people I had epilepsy for a very long time because there was so much stigma around it, but now I am finding it easier to talk about it and share my story so that maybe I can help others with the condition.
“I’m so grateful the team at Mater has given me the courage and tools to speak more openly about my journey.”
The speech pathology clinical appointment has been funded by Mater Foundation and Epilepsy Queensland. The research is jointly funded by Mater Foundation, Royal Brisbane and Women’s Hospital Foundation, and the Herston Imaging Research Facility.
About 50 million people worldwide live with epilepsy, and 30 per cent will not respond to medication. Surgery is often the only option for these patients to achieve seizure control. Better speech and language assessment and targeted treatment could help mitigate risk of communication difficulties for some patients.
August 21 -27 is Speech Pathology Week.