Transcript Document

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
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
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)
The Diagnosis
• What is the first thing that happens?
• What do you feel like afterwards?
• What do others describe?
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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
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,
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
Some useful facts…
• Biting of the lips and front of the tongue is common in nonepileptic 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
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
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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
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.
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.
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
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
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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)
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**
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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
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Women and Epilepsy
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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
Lamotrigine
Initially believed to have no effect on the pill
Suggested that it can reduce efficacy of the pill and viceversa
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
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
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.
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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
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.
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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
What about QOF?
Points
%ages
register of patients >18 with
epilepsy, who have been on
treatment in last 6/12
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Fit frequency recorded
4 gone
50-90%
Seizure free for previous 12 months
6 gone
45-70%
Women <55 receiving advice on
contraception, pre-conception or
pregnancy in last 12 months
3 gone
50-90%
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Referrals
• Choose and Book
• Dr Kalinsky - Based in Penrith
• Sam Robinson - Epilepsy Advisor
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
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
Any Questions?
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