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Gadgets, Gizmos and Guidance

Gadgets, Gizmos and Guidance. Rebecca Case Epilepsy Nurse Specialist. Living With Epilepsy. Seizure control Quality of Life Reducing morbidity and mortality “Every therapeutic option should be explored in the presence or absence of learning disabilities” NICE 2012.

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Gadgets, Gizmos and Guidance

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  1. Gadgets, Gizmos and Guidance Rebecca Case Epilepsy Nurse Specialist

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

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

  4. Medication (U.S. data) • 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 • 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 • People who miss doses need 3 times as many doctor visits as others • When prescriptions are written, • 1/3 of patients take the medicine as directed • 1/3 take some of the medicine • 1/3 never fill the prescription

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

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

  7. 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)

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

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

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

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

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

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

  14. 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

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

  16. Safety • Heat • Water • Heights • Machinery • Obstacles • Relationships • Independence • Medication

  17. References • Disabled Living Foundation www.dlf.org.uk • Support Dogs www.support-dogs.org.uk • DoH (2005) The national service framework for long-term conditions London, UK • JEC (2002) National statement of good practice Liverpool, UK • NICE (2002) National clinical audit of epilepsy related death London, UK • NICE (2012) The epilepsies London, UK • www.epilepsy.org.uk • www.epilepsysociety.org.uk • www.epilepsyandpregnancy.co.uk

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