Supporting Epilepsy: A Case Manager’s Perspective on Purple Day

Our Case Manager, Jenny Webster focuses on the importance of Epilepsy Day (Purple Day), and her experience supporting a client with irretractable epilepsy, a condition that can be incredibly challenging for both the individual and their loved ones.

"The focus of Purple Day, celebrated across the world on the 26th of March, is to increase awareness and understanding of epilepsy. Epilepsy affects 1 in 103 people living in the UK and can arise for a variety of reasons including genetic mutations, neurological injury, brain tumours and metastasis, infections and neurodegenerative conditions.

Supporting someone with epilepsy goes beyond awareness—it’s about understanding their daily challenges and educating others to be proactive and sensitive in their interactions with them.

One of my clients has a diagnosis of irretractable epilepsy arising as a result of a birth injury. This means that despite having Vagal Nerve Stimulation (VNS) in place and a wide range of medications, he can still experience up to thirty tonic-clonic seizures per day and will on occasion require Buccal Midazolam. He has also developed Cerebellar Atrophy as a result of long term Phenytoin use meaning that the man I first supported 10 years ago who would love to go to the beach and kick a football around is now sleeping most of the day and night, having to have all his medication via a Percutaneous Endoscopic Gastrostomy (PEG) and is requiring specialist seating and equipment to manage his posture.

Supporting a client with such a challenging presentation means that communication with statutory services, the support team, and the Multi-Disciplinary Team (MDT) has to be seamless. In his case, he is currently under a Consultant at Queen’s Square London and has now been prescribed Cannabinol to help further manage his symptoms. It isn’t a quick fix  him though and we continue to experience significant peaks and troughs with his condition. Helping his family through this is essential, remembering to listen to their experiences of various medications and fully involve them in their son’s medical management.

There are actions we can take as Case Managers to minimise the risk of seizures for our diagnosed clients, and we need to remember that the condition can develop many years after the initial injury. Monitoring for signs of infection, constipation, poor nutrition and hydration, fatigue and over-excitement can help.

On Purple Day, my biggest piece of advice is do your research and be familiar with how to manage someone in seizure as you never know when you could possibly save someone’s life outside of work! Check out resources on Epilepsy Action and the Epilepsy Society to educate yourself."

-            Jenny Webster, Case Manager