How to get involved
1. Should all patients with unexplained loss of consciousness be referred to a neurologist? Is a GPwSI an acceptable alternative?
It depends on the cause of the blackout and the availability of neurologists in your area. GPwSI services should have been developed as part of a service redesign between primary and secondary care, and so the best person to assess the referral will be implicit in this redesigned service.
If an epileptic cause is suspected you should follow the NICE guidance, which states that a patient with possible epilepsy should be seen urgently by a 'specialist with an interest and expertise in the condition'. It is your responsibility to know who that is in your locality.
The developing role of a GPwSI for epilepsy in many parts of the country is to review and support patients and offer an intermediate tier of service.
2. What is an acceptable waiting time? NICE says that 'urgent' means within two weeks.
This is difficult for some trusts but must be the aim. It may be useful to use the CMO England's action plan and the frightening results of the epilepsy deaths audit to force health authorities' hands.
3. Should GPs ever initiate anticonvulsants while waiting for the patient to be seen?
Almost never. If there is an unacceptable wait and the individual has frequent generalised seizures, particularly at night, then urgent assessment and treatment is required. If a face-to-face consultation is not forthcoming, then primary care initiation of treatment should be done only after discussion between GP and the specialist.
4. What are the advantages and limitations of EEGs in diagnosing epilepsy?
An EEG can only support a diagnosis made by a clinical history. It can help to determine seizure type and syndrome, and sometimes assess the risk of further seizures
after a first unprovoked attack. EEG should not be used to exclude a diagnosis of epilepsy and must not be used in isolation. EEG should not be done to 'rule out' epilepsy in probable syncope.
5. When are MRI scanning, CT scanning, videotelemetry or diffusion tension imaging used and why?
· Neuro-imaging is used to identify structural abnormalities that cause certain epilepsies. It should not be requested routinely for someone with idiopathic generalised epilepsy.
· MRI gives more detailed images than CT but may be unavailable.
· Videotelemetry is an observational investigation matching EEG patterns to a video of the patient to determine the underlying cause of refractory seizures.
· Diffusion weighted and functional MR scanning are specialised procedures that some specialists use to 'watch' the brain around seizure activity.
6. Not all patients are kept under neurological review. What should a GP's annual review of epilepsy cover?
Although the inclusion of epilepsy in the new GP contract was welcome, the QOF points are only a tick list indicating minimal care. The review should offer a lot more and this can be done by following the format in box 1.
People with epilepsy should be partners in any management decisions, and we should be able to suggest sources of support and information. People with epilepsy consult more than the general population, so an effective review visit should not take additional clinical time but just use the usual consultation time more effectively.
7. Under what circumstances should patients with known epilepsy be admitted following a fit?
A 'fit' usually means a convulsion but can be used for all sorts of episodes. So it is better to talk about a seizure than a 'fit' or 'convulsion' which is simply a seizure of the motor cortex.
Anyone with generalised seizures that are prolonged, frequent, or with associated neurological impairment needs careful assessment and observation.
People in status epilepticus need immediate intensive care.
Consideration about the dangers of repeated seizures in people who live on their own may influence the decision on whether to admit.
8. What do GPs need to know about the practicalities of prescribing the newer drugs such as lamotrigine, gabapentin, topiramate, levetiracetam, oxcarbazepine, tiagabine and vigabatrin?
The new drugs should be initiated and monitored by the specialist. The GP should accept prescribing responsibility only when the drug(s) are in steady state. Most anti-epileptic drugs can cause sedation, dizziness, dysarthria, diplopia, headache, depression or behavioural disorders.
A recent NICE drug appraisal failed to demonstrate significant benefits of newer drugs over the established preparations, and the newer drugs should be tried only if there are problems of tolerability or adverse effects.
9. What is the rationale for monitoring vitamin D, calcium and alkaline phosphatase levels in adults taking anti-epileptic drugs? How often should this be done?
Some drugs induce hepatic enzymes and so FBC, U&Es, liver enzymes, vitamin D levels and other tests of bone metabolism should be considered every two to five years.
Monitoring of regular drug levels is not routinely advised and is needed only if there are clinical reasons suspected non-adherence, adjustment of phenytoin dose, pharmacokinetic interactions, or specific conditions such as pregnancy or organ failure.
10. What non-pharmacological interventions work in epilepsy?
While drugs are the most effective treatment modality for most patients, some other therapies may be used as an adjunct to reduce refractory seizures.
Vagal nerve stimulation (VNS), an implanted device to stimulate the vagus nerve, can reduce focal seizures in suitable individuals.
The ketogenic diet may reduce focal seizures in children but has no place in adult therapy.
Biofeedback and relaxation may be used by the individual to abate an imminent attack.
Resective neurosurgery can be curative in a few suitable patients, but they have to be fully investigated to assess the potential benefits and drawbacks of the procedure.
11. Are there ethnic differences in epilepsy rates?
In the absence of a gold standard diagnostic test, we don't know for sure. Incidence and prevalence rates from epidemiological studies are prone to inaccuracy because of operational uncertainty in some settings.
Most data is drawn from studies in Europe and North America, but work in the developing world suggests a higher incidence. Whether this is due to ethnic differences or to higher rates of birth trauma and other causes of epilepsy is not certain.
12. How do patients' beliefs and reactions to a diagnosis of epilepsy vary in different cultures?
The impact of epilepsy can be profound and is viewed negatively in most cultures. The diagnosis carries substantial stigma. Some cultures share the view of the Yoraba in Nigeria that epilepsy is a 'visitation from the devil' while some Asian women with epilepsy have little chance of an arranged marriage.
But these negative views are counter-
balanced by those of the Asian Hmong dynasty, who regard children with epilepsy as a great spiritual gift.
13. What advice should we give about contraception and pregnancy?
Women of childbearing age should
be given advice about conception, contraception, pregnancy and breastfeeding in advance of sexual activity or pregnancy. The epilepsy charities are an excellent source of information. Emerging evidence about the risks of anti-epilepsy drugs in pregnancy suggest there is no safe drug but that some are safer than others and monotherapy reduces the risks. Treatment decisions should be tailored to the individual and her epilepsy.
Women taking enzyme inducers need higher oestrogen doses (a minimum of 50µg daily), and the POP and implant are not recommended. There is debate about shortening the depot interval, but some authorities suggest a 10-week regime.
The dose of emergency contraception should be increased: levonorgestrel to 1.5mg and 750µg 12 hours apart.
Women contemplating pregnancy should be offered 5mg of folate.
Care of pregnant women should be shared between obstetric and epilepsy specialists. You should encourage pregnant women to enrol on the UK Epilepsy and Pregnancy register. You should discuss the dangers of rebound seizures or status if drugs are stopped, thus increasing the risk of SUDEP. After birth, you should discuss safety precautions as outlined in the NICE guidance.
14. What should we do when a woman on anti-epileptic drugs presents with an unplanned but wanted pregnancy?
She should be referred urgently to a combined specialist clinic for counselling and discussion of early scanning.
15. What are the risk factors for SUDEP? What should ring alarm bells and how should we counsel patients?
Perhaps 1,000 people die as a result of epilepsy in the UK each year. About half those deaths are classed as SUDEP.
Reported risk factors include a young age, generalised tonic-clonic seizures, uncontrolled epilepsy, learning disability, seizures occurring during sleep, unwitnessed seizures and poor adherence to medication.
The best way to reduce the risk of
death from epilepsy is to control seizures. You should discuss the possibility of
death and the risks of stopping drugs. If seizures during sleep are a factor, then
you should suggest leaving the door open and alerting family or friends that they should respond to noises or disturbance, and also that they should disturb someone if they are not breathing as usual or become quiet.
Information is available from epilepsy charities. Epilepsy Bereaved is a specific charity to support families who have suffered bereavement as a result of epilepsy.
16. NICE estimates that 20-31 per cent of patients with epilepsy have been misdiagnosed. Has diagnosis become reliable; if so, since when?
The diagnosis is a clinical one based on
a careful and detailed individual and witness history.
With the development of epilepsy nurse specialists and more active primary care for epilepsy, the range of symptoms due to the condition may be recognised and diagnosis may become more accurate.
Henry Smithson is chair of the NICE epilepsy guidelines group and a GP in York
The annual review
Is the diagnosis of epilepsy correct?
Check how it was made and who made it 15-25 per cent of cases are misdiagnosed. If there is doubt, consider referral back to a specialist.
Ensure that a seizure type is recorded in the
notes and that there is no contradiction in the hospital letters.
Seizure frequency and pattern
This should be recorded along with the date of the last seizure. Any change in seizure pattern may require specialist advice.
Consider effectiveness, tolerability, side-effects, interactions and concordance with prescribed medication.
Discuss the treatment plan and any lifestyle issues driving, education, employment, conception and pregnancy, moving away from home.
Ensure that the individual has received appropriate information (as listed in the NICE quick reference guide) and knows how to contact a voluntary group and record what information has been given. Refer to a specialist nurse or GPwSI if necessary.
Plan for next review.
What I will do now....
Dr Wynne-Jones comments on the answers to her questions:
· I didn't realise that so many people died of epilepsy in the UK each year. It's reassuring to have official back-up for requesting urgent neurological opinions.
· I found the review checklist very helpful, although I doubt whether I could cover all of it in a standard 10-minute appointment. I think we will also need to monitor patients' bone metabolism more closely.
· I have tended to accept a longstanding diagnosis of epilepsy in patients who have been with the practice a long time and indeed in patients who
join the practice from elsewhere but it may be worth reviewing their notes to see how robust the diagnosis actually was.
Dr Wynne-Jones is a GP in Marple, Cheshire and a GP trainer