Diagnosing and treating epilepsy is a complex process. It demands thorough medical histories, neurological exams, and advanced tools like EEGs and MRIs. However, treatment goes beyond seizure control—patients require holistic care that considers their lifestyle, well-being, and the side effects of medications, such as high cholesterol or infertility. At the Epilepsy Outpatient Clinic at Beaumont Hospital, FutureNeuro researchers see first-hand the intricate realities of patient care and gain invaluable experiences that shape their professional growth and broaden their research skills.  

As part of FutureNeuro’s commitment to Public and Patient Involvement (PPI), our team, including PhD students, Project Leads and members of the Operations Team, have the rare opportunity to engage with both the patients and the medical teams who support them. This hands-on experience underscores the importance of the patient voice in shaping our research.   

PhD student Fatima Butt reflected on her visit: “Meeting patients and their families was an eye-opening experience that deepened my understanding of neurological disorders. It reinforced the significance of patient-centered care, and the role research plays in improving outcomes.” 

Collaborative Care: Learning from Clinical Experts 

Led by Prof Norman Delanty, the clinic emphasises collaboration and continuous learning. His team, including nursing staff, specialist registrars, and medical students, are encouraged to actively contribute ideas and recommendations for treatment plans. The collective approach fosters innovation and creativity in patient care. 

“This collaboration is vital in pushing the boundaries of what’s possible in medical science,” Fatima Butt adds.  

Prof Delanty also includes patients in decision-making, ensuring they play a central role in their own treatment, particularly when changes in medication are considered.  

As PhD student Rafael Cipolat noted, “The clinic’s holistic approach, which addresses both the medical and emotional needs of patients and their families, highlights the importance of comprehensive healthcare. 

Bridging Gaps in Epilepsy Research and Care 

Despite advances in medical science, many patients still face gaps in care due to the complexity of the epilepsies. Accurate diagnosis remains a challenge, as symptoms can overlap with other conditions like Parkinson’s disease. During their visit, researchers learned about the various treatment options available, including anti-seizure medications like mTOR inhibitors, GABA channel blockers, and surgical interventions. However, treatment side effects, such as reduced sperm count from medications like valproate, add layers of complexity to patient care. 

Dr Laura Brady, Digital Health Innovation Lead, recalls a particularly sensitive case: “Prof. Delanty handled a young male patient’s concerns about starting a family with incredible empathy and compassion.”

Advancing Research Through Collaboration and Communication  

Open, compassionate communication is critical in healthcare, especially when navigating difficult diagnoses or treatment decisions.  

“I left with immense respect for the FutureNeuro consultants, who despite their demanding schedules, prioritize research to complement and enhance patient care both now and in the future,” said Dr Laura Brady.  

Prof Delanty’s team is at the forefront of epilepsy research, exploring advanced therapies like gene replacement for TSC1 gene dysfunction and developing more effective mTOR inhibitors. Innovations like AI tools and the epilepsy patient record (EPR) are transforming diagnostic accuracy and treatment strategies. Yet, the foundation remains human—collaboration and patient-centred care guide every decision.   

“Seeing the impact of epilepsy research on real lives deepened my commitment to contributing meaningfully to healthcare advancements, no matter how small,” adds Rafael Cipolat. 

Beyond the Tunnel Vision: Connecting Research to Lives 

Tunnel vision can limit researchers to what they expect to find, rather than what’s truly there. For many FutureNeuro scientists, this clinic experience shattered that narrow focus, providing invaluable context and connection to the real lives behind the data. 

“This experience reminded me to always ask if the work I’m doing today is truly helping people,” reflected Dr Laura Whelan, Project Manager for Genomic Data Infrastructure Ireland. “If the answer is yes, I know I’m on the right path.”

Meeting patients face-to-face provided an alternative perspective for Senior Research Associate, Dr Elena Langa:

“I usually work with plasma samples, unaware of the personal stories behind them. Meeting the people whose lives we aim to change gave my research new depth. Without a doubt, I’d do it again!”

For Rafael Cipolat, the visit was transformative:

“It reinforced my dedication to experimental research that translates into real improvements in patient health.” 

By embedding patient engagement and clinical exposure into our research training, FutureNeuro researchers are reminded that true innovation is most impactful when it addresses the needs and realities of those it seeks to serve.  

We’re excited to announce that the programme is running again this academic year, with slots available for any of the FutureNeuro community interested in participating. If you’d like to gain this one-of-a-kind experience in epilepsy care and research, get in touch—we’d love to have you join us!