Gadgets, Gizmos and Guidance Rebecca Case Epilepsy Nurse Specialist

Living With Epilepsy Seizure control Seizure control Quality of Life Quality of Life Reducing morbidity and mortality Reducing morbidity and mortality “Every therapeutic option should be explored in the presence or absence of learning disabilities” NICE 2012 “Every therapeutic option should be explored in the presence or absence of learning disabilities” NICE 2012

NICE 2012 Recommendations “ All people with learning disabilities should have a risk assessment including: “ All people with learning disabilities should have a risk assessment including: Bathing and showering Bathing and showering Preparing food Preparing food Using electrical equipment Using electrical equipment Managing prolonged or serial seizures Managing prolonged or serial seizures The impact of epilepsy in social settings The impact of epilepsy in social settings SUDEP SUDEP The suitability of independent living” The suitability of independent living”

Medication (U.S. data) Non-compliance causes 125,000 deaths a year Non-compliance causes 125,000 deaths a year 10% of admissions to regular hospitals are due to non-compliance, at a cost of $15 billion a year 10% of admissions to regular hospitals are due to non-compliance, at a cost of $15 billion a year Half of all prescriptions are taken incorrectly, contributing to prolonged or additional illness Half of all prescriptions are taken incorrectly, contributing to prolonged or additional illness Non-compliance increases with the number of medications and doses per day; at 4 times a day, only 40% get it right Non-compliance increases with the number of medications and doses per day; at 4 times a day, only 40% get it right People who miss doses need 3 times as many doctor visits as others People who miss doses need 3 times as many doctor visits as others When prescriptions are written, When prescriptions are written, 1/3 of patients take the medicine as directed 1/3 of patients take the medicine as directed 1/3 take some of the medicine 1/3 take some of the medicine 1/3 never fill the prescription 1/3 never fill the prescription

Medication Nomad systems Diary boxes Delivery systems Mobile phone reminders Carer support Single dose meds Visual calendar Apps Automated dispensers Telephone reminder services Pagers

Recording EEG EEG MRI/ Scans MRI/ Scans Seizure diaries Seizure diaries Video Recordings Video Recordings Eye witness account Eye witness account Prolactin levels Prolactin levels Neuropsychological assessment Neuropsychological assessment

Vagal Nerve Stimulation Demipulse Aspire HC (longer battery life, improved electronics, simplified programme features) Aspire SR (monitors seizure and cardiac, delivers increased stimulation in response)

Deep Brain Stimulation Interventional Procedure Guidance 416 Interventional Procedure Guidance 416 Targeted stimulation Targeted stimulation Results similar to VNS Results similar to VNS

Bio-feedback Monitoring internal body states Feedback on brainwave activity Inhibition of abnormal activity Computer training to master skill

Seizure Alarms Baby Intercoms Baby Intercoms Bed alarms (Tonic clonic) Bed alarms (Tonic clonic) Mat/ door alarms (Focal) Mat/ door alarms (Focal) Apnoea monitors (Tonic clonic/ SUDEP) Apnoea monitors (Tonic clonic/ SUDEP) Fall alarms Fall alarms Telephone alarms Telephone alarms Location devices Location devices Seizure alert dogs Seizure alert dogs

On-line Support Epilepsy Society Epilepsy Society Epilepsy Action Epilepsy Action Forum4e Forum4e Epilepsyfoundation Epilepsyfoundation Coping-with-epilepsy Coping-with-epilepsy You Tube You Tube Twitter Twitter Facebook Facebook

Smartphone Apps Interactive seizure diary Interactive seizure diary “My seizures” “My seizures” First aid info First aid info Seizure info Seizure info Medication info Medication info Recovery guide Recovery guide

Medical Alerts ID cards ID jewellery ICE number Crisis Response Helpline Fridge boxes E-safe medical records Automatic ambulance call out

Seizure Alert Dogs Can warn owners of an approaching seizure up to 40 mins before it happens Gets help when injuries are apparent Decreases incidence of seizure by 43% Improves quality of life, confidence and independence

Lifestyle Medication Alcohol/ Drugs Sleep Diet Flashing lights Leisure Caffeine Relationships Stress Depression/ Anxiety

Safety Heat Heat Water Water Heights Heights Machinery Machinery Obstacles Obstacles Relationships Relationships Independence Independence Medication Medication

References Disabled Living Foundation Disabled Living Foundation Support Dogs Support Dogs DoH (2005) The national service framework for long-term conditions London, UK DoH (2005) The national service framework for long-term conditions London, UK JEC (2002) National statement of good practice Liverpool, UK JEC (2002) National statement of good practice Liverpool, UK NICE (2002) National clinical audit of epilepsy related death London, UK NICE (2002) National clinical audit of epilepsy related death London, UK NICE (2012) The epilepsies London, UK NICE (2012) The epilepsies London, UK