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The costs in England (JEC Data 2011)

The costs in England (JEC Data 2011). Around 496 000 people affected in England (1 in every 105 people) Over 40 types of epilepsy including at least 29 different epileptic syndromes and more than 38 seizure types and 1 individual may experience several of these Incidence 51/100,000 per year

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The costs in England (JEC Data 2011)

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  1. The costs in England (JEC Data 2011) • Around 496 000 people affected in England (1 in every 105 people) • Over 40 types of epilepsy including at least 29 different epileptic syndromes and more than 38 seizure types and 1 individual may experience several of these • Incidence 51/100,000 per year • Around 114 100 misdiagnosed (23%) • £38 109 000 million in unnecessary treatment • £182 788 200 million in unnecessary non medical costs

  2. The costs in England (JEC Data 2011) • Around 108 000 living with treatable seizures • 1150 deaths from epilepsy related causes in 2009 = 3 per day, more than SIDS and Asthma • 110 in children and young adults under 25 • Around 480 are potentially avoidable • Around 50% due to SUDEP • About 23% of the total population of people with epilepsy are women of childbearing age

  3. Epilepsy in Cumbria • Data taken from Epilepsy Audit Dec 2006 • 1030 patients in Eden and Carlisle • Done by a medicines manager using data collected by QOF • 85% patients taking medication correctly • 72% on a single drug • 32% have active epilepsy (seizure in the last year)

  4. The Diagnosis • What is the first thing that happens? • What do you feel like afterwards? • What do others describe?

  5. Syncope • What is the first thing that happens? • Feel dizzy, light headed, cold and clammy, often hear what is happening, feel distant, unable to respond • What do you feel like afterwards? • Bad for about 10 minutes, nausea, vomiting, sound returns before vision, +/- incontinence, no significant confusion • What do others describe? • Pale, clammy, slump over, some brief jerks, eyes open

  6. Hyperventilation Syndrome • What is the first thing that happens? • Dizzy, light headed, tingling in face, hands and feet, sometimes unilateral • What do you feel like afterwards? • Bad headache and tired • What do others describe? • Go stiff, +/- jerking of limbs, eyes closed,

  7. Seizure • What is the first thing that happens? • Either no warning or an ‘aura’; rising sensation in stomach, strange taste or smell, visual or auditory hallucinations • What do you feel like afterwards? • Tired, confused, want to sleep, headache, may have been incontinent, bitten side of tongue, generally stiff and achey • What do others describe? • Look vacant, eyes roll, go stiff/rigid, rhythmical jerks of limbs, choking noises, head turned to side, confused afterwards

  8. Some useful facts… • Biting of the lips and front of the tongue is common in non-epileptic seizures • An EEG does not make a diagnosis of epilepsy, it merely supports a clinical diagnosis • Hyperventilation and light sensitivity are tested when the EEG is carried out • Epilepsy is more common in over 60’s than any other age group

  9. When you suspect epilepsy • Refer to consultant neurologist – they will arrange an MRI and EEG if necessary (Aim- to be seen within 2 weeks) • Diagnosis of epilepsy is generally only made after 2 seizures • Someone must go with them to clinic or send a witness statement • Was there any predisposing factor, i.e. BDZ, EtOH? • There is no need in most cases to start medication • Ask them to stop driving until they are seen, ask about job and hobbies

  10. Treatment • Focal seizures +/- generalisation • Carbamazepine, Lamotrigine, Levetiracetam, Valproate (Phenytoin, Topiramate, Zonisamide, Vigabatrin) • Primary generalised seizures • Valproate, Lamotrigine, Levetiracetam, (Phenytoin) • Absence seizures • Valproate, Lamotrigine, Ethosuximide • Juvenile Myoclonic Epilepsy (JME) • Valproate, +/- Levetiracetam

  11. Emergency Management • Rectal Diazepam 10mg still first line • 1-2mg Lorazepam IV if have access • 10mg Buccal/intranasal Midazolam - unlicensed over 18 • Midazolam is now the recommended emergency rescue medication.

  12. Monitoring Medication • Carbamazepine – FBC, LFT, U&E, Coag initially and then every 8 weeks for 1st 6 months. Then every 6 months. • Valproate – LFT, FBC, Coag initially and then as above *not for use in clotting/liver disorders • Lamotrigine – LFT, U&E, FBC, Coag initially, then as above. • Levetiracetam – LFT, U&E, initially and then as above. Avoid sudden withdrawal. *care if renal/hepatic impairment • Phenytoin – Aim for 10-20mg/l. Check level along with FBC, LFT, U&E initially and then every 4-6 weeks for 1st 6 months.

  13. When can medication be stopped? • After discussion with patients about risks involved, generally suggest that attend clinic to review. • In palliative cases it depends how much of an issue the seizures are

  14. General Information • Free prescriptions • Basic first aid and risk management • What to do if seizures are prolonged • Driving restrictions • Women's issues • Insurance • Employment • Drugs / alcohol • Sport and Recreation • SUDEP

  15. Driving Restrictions http://www.dvla.gov.uk/at_a_glance/ch1_neurological.htm • Group 1 licence (car or motorcycle) • Single seizure full licence returned after 6 months** • Free of seizures for 1 year • Nocturnal seizures ONLY for 1 year (was 3) • They pose no other threat to the public or themselves when driving a vehicle • Ongoing seizures that do not affect consciousness, 1 year • Medication changes- shouldn’t drive when regime changes. If have a seizure and return to previous medication, can resume driving again after 6 months if seizure free (was 1 year)

  16. Driving Restrictions http://www.dvla.gov.uk/at_a_glance/ch1_neurological.htm • Group 2 licence (lorries larger than 3.5 tonnes and passenger carrying vehicles with 9 or more seats) • Single Seizure = full licence returned after 5 years** • No seizures for 10 years • No AEDs for 10 years • No continuing liability to seizures • Loss of awareness where cause is uncertain and epilepsy is not diagnosed = loss of licence for 5 years • Provoked seizures e.g. intracerebral lesion, eclampsia • These are treated on an individual basis by the DVLA, but DO NOT include seizures caused by drugs or alcohol

  17. Women and Epilepsy

  18. Contraception • Enzyme inducers (carbamazepine, phenytoin, topiramate) • 50 mcg pill • Increase if BTB to 80 or 100 mcg OR • 4 packs consecutively with a 4 day pill free interval • Extra contraception for 8 weeks after withdrawal of enzyme inducer • Depot – 10 weekly • Copper coil / Mirena coil • Emergency contraception – double dose - suggested repeated at 12 hours

  19. Lamotrigine • Initially believed to have no effect on the pill • Suggested that it can reduce efficacy of the pill and vice-versa • Manufacturer recommends: follow same guidelines as for enzyme inducing drugs • Family Planning recommends: should be OK • We recommend: discussing that pill/LTG efficacy could be affected and that should use condoms in addition if definitely want to use COCP/POP

  20. Pregnancy • 2500 babies born each year to women with epilepsy • 90% of women who are seizure free before pregnancy remain seizure free • Latest data for all women from the epilepsy pregnancy register • around 10% of babies born to women with epilepsy are at risk of developing the condition

  21. Pregnancy • Depends on which AEDs are taken and at what dose. • The following statistics may help you to keep this increased risk in perspective. • 1 – 2 % in the general population will have a baby with a major malformation. • 3% who have epilepsy and don’t take AEDs will have a baby with a major malformation. • 4 – 8% who have epilepsy and do take AEDs will have a baby with a major malformation depending on the medication and its dose. • 25

  22. Pregnancy • If possible refer to clinic pre-conception • Should have 5mg Folic acid while trying to conceive and until at least week 12 • Should have shared care • Detailed anatomy scan at 20 weeks • If on an enzyme inducing drug, should have Vit K (20mg orally) daily from 36 weeks until delivery and baby should receive 1mg IM at birth • Encourage all women to join the UK Epilepsy and pregnancy register http://www.epilepsyandpregnancy.co.uk/ Freephone Number: 0800 389 1248

  23. Menopause • Oestrogen is known to have a pro-convulsant effect for some women. HRT can increase seizure frequency. Equally seizure frequency can be reduced. • Taking AEDs (Phenytoin, Carbamazepine, Primidone and Sodium Valproate) may reduce bone density. Main risk; high doses, multiple drugs, housebound. • Treat each individual based on their risk; smoker, low BMI, family history, fractures, may warrant DEXA scan. • 27

  24. What about QOF? • Current register of patients • Everything else has gone -seizure frequency • Seizure free for 12 months remains -seizure type -seizure control -medication review -concordance

  25. What about QOF?

  26. Referrals • Choose and Book • Dr Kalinsky - Based in Penrith • Sam Robinson - Epilepsy Advisor

  27. Sam Robinson • Adults with diagnosed epilepsy • Poor control/Increased Seizure frequency • Recurrence of seizures • Problems with medication • Stabilising/changing medication • Withdrawing medication • Pre-conceptual advice • Post-partum advice • Counselling

  28. Support • Organisations • Epilepsy Action www.epilepsy.org.uk • NSE www.epilepsynse.org.uk • Epilepsy Bereaved www.sudep.org • Helplines - 01494 601 400 (Mon-Fri: 10-4) - 0808 800 5050 (freephone) • Benefits and support from social services

  29. Any Questions?

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