Gadgets, Gizmos and Guidance

Rebecca CaseRebecca Case

Epilepsy Nurse SpecialistEpilepsy Nurse Specialist

Living With Epilepsy

Seizure controlSeizure control Quality of LifeQuality of Life Reducing morbidity and mortalityReducing morbidity and mortality ““Every therapeutic option should be explored in Every therapeutic option should be explored in

the presence or absence of learning disabilities” the presence or absence of learning disabilities” NICE 2012NICE 2012

NICE 2012 Recommendations

“ “ All people with learning disabilities should have a risk All people with learning disabilities should have a risk assessment including:assessment including:

Bathing and showeringBathing and showering Preparing foodPreparing food Using electrical equipmentUsing electrical equipment Managing prolonged or serial seizuresManaging prolonged or serial seizures The impact of epilepsy in social settingsThe impact of epilepsy in social settings SUDEPSUDEP The suitability of independent living”The suitability of independent living”

Medication (U.S. data)

Non-compliance causes 125,000 deaths a yearNon-compliance causes 125,000 deaths a year 10% of admissions to regular hospitals are due to non-compliance, at a 10% of admissions to regular hospitals are due to non-compliance, at a

cost of $15 billion a year cost of $15 billion a year Half of all prescriptions are taken incorrectly, contributing to prolonged Half of all prescriptions are taken incorrectly, contributing to prolonged

or additional illness or additional illness Non-compliance increases with the number of medications and doses Non-compliance increases with the number of medications and doses

per day; at 4 times a day, only 40% get it right 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 prescription1/3 never fill the prescription

Medication

Nomad systemsNomad systems Diary boxesDiary boxes Delivery systemsDelivery systems Mobile phone remindersMobile phone reminders Carer supportCarer support Single dose medsSingle dose meds Visual calendarVisual calendar AppsApps Automated dispensersAutomated dispensers Telephone reminder servicesTelephone reminder services PagersPagers

Recording

EEGEEG MRI/ ScansMRI/ Scans Seizure diariesSeizure diaries Video RecordingsVideo Recordings Eye witness accountEye witness account Prolactin levelsProlactin levels Neuropsychological Neuropsychological

assessmentassessment

Vagal Nerve Stimulation

DemipulseDemipulse Aspire HC (longer battery Aspire HC (longer battery

life, improved electronics, life, improved electronics, simplified programme simplified programme features)features)

Aspire SR (monitors Aspire SR (monitors seizure and cardiac, seizure and cardiac, delivers increased delivers increased stimulation in response)stimulation in response)

Deep Brain Stimulation

Interventional Procedure Interventional Procedure Guidance 416Guidance 416

Targeted stimulationTargeted stimulation Results similar to VNSResults similar to VNS

Bio-feedback

Monitoring internal body Monitoring internal body statesstates

Feedback on brainwave Feedback on brainwave activityactivity

Inhibition of abnormal Inhibition of abnormal activityactivity

Computer training to Computer training to master skillmaster skill

•

Seizure Alarms

Baby IntercomsBaby Intercoms Bed alarms (Tonic clonic)Bed alarms (Tonic clonic) Mat/ door alarms (Focal)Mat/ door alarms (Focal) Apnoea monitors (Tonic Apnoea monitors (Tonic

clonic/ SUDEP)clonic/ SUDEP) Fall alarmsFall alarms Telephone alarms Telephone alarms Location devicesLocation devices Seizure alert dogsSeizure alert dogs

On-line Support

Epilepsy SocietyEpilepsy Society Epilepsy ActionEpilepsy Action Forum4eForum4e EpilepsyfoundationEpilepsyfoundation Coping-with-epilepsyCoping-with-epilepsy You TubeYou Tube TwitterTwitter FacebookFacebook

Smartphone Apps

Interactive seizure diaryInteractive seizure diary ““My seizures”My seizures” First aid infoFirst aid info Seizure infoSeizure info Medication infoMedication info Recovery guideRecovery guide

Medical Alerts

ID cardsID cards ID jewelleryID jewellery ICE numberICE number Crisis Response HelplineCrisis Response Helpline Fridge boxesFridge boxes E-safe medical recordsE-safe medical records Automatic ambulance call Automatic ambulance call

outout

Seizure Alert Dogs

Can warn owners of an Can warn owners of an approaching seizure up to 40 approaching seizure up to 40 mins before it happensmins before it happens

Gets help when injuries are Gets help when injuries are apparentapparent

Decreases incidence of seizure Decreases incidence of seizure by 43%by 43%

Improves quality of life, Improves quality of life, confidence and independenceconfidence and independence

Lifestyle

MedicationMedication Alcohol/ DrugsAlcohol/ Drugs SleepSleep DietDiet Flashing lightsFlashing lights LeisureLeisure CaffeineCaffeine RelationshipsRelationships StressStress Depression/ AnxietyDepression/ Anxiety

Safety

Heat Heat WaterWater HeightsHeights MachineryMachinery ObstaclesObstacles RelationshipsRelationships IndependenceIndependence MedicationMedication

References

Disabled Living Foundation www.dlf.org.ukDisabled Living Foundation www.dlf.org.uk Support Dogs www.support-dogs.org.ukSupport Dogs www.support-dogs.org.uk DoH (2005) DoH (2005) The national service framework for long-term conditionsThe national service framework for long-term conditions London, London,

UKUK JEC (2002) JEC (2002) National statement of good practiceNational statement of good practice Liverpool, UK Liverpool, UK NICE (2002) NICE (2002) National clinical audit of epilepsy related deathNational clinical audit of epilepsy related death London, UK London, UK NICE (2012) NICE (2012) The epilepsiesThe epilepsies London, UK London, UK www.epilepsy.org.ukwww.epilepsy.org.uk www.epilepsysociety.org.ukwww.epilepsysociety.org.uk www.epilepsyandpregnancy.co.ukwww.epilepsyandpregnancy.co.uk