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Active epilepsy
Those with continuing seizures should benefit from continuing secondary care, with
additional investigations and treatments being available. Video telemetry and high resolution
MRI may be indicated, and the patient may need to try second-line or experimental drugs, or
be assessed for epilepsy surgery or neurostimulation20. All people with epilepsy should be
able to consult a tertiary care specialist (via the secondary care specialist) should the
circumstances require this19. Suggested criteria for referral to tertiary care are:

 Epilepsy not controlled with medication within two years, or after two AEDs
 Unacceptable side effects of AEDs
 Presence of a unilateral structural lesion
 Psychological or psychiatric comorbidity
 Diagnostic doubt19.

Controlled epilepsy
Although those adults who become seizure free will probably not need ongoing secondary
care, it is important that re-referral can be swiftly instigated should seizures recur, or
circumstances change (e.g. impending pregnancy). NICE suggests that AED withdrawal
should be discussed with adults who have been seizure free for at least two years; it is
important that this decision is made by the patient and the specialist after a full discussion of
the risks and benefits, and that the withdrawal be under the guidance of the specialist19. In
children a regular structured review, occurring at least yearly, should be provided by a
specialist19.

Accident and emergency care

In line with the findings of the NASH reports, a survey in Leeds in 1998 showed that fewer
than one-quarter of people with epilepsy-related emergencies seen in A&E were referred for
neurological follow-up, noted to be under regular specialist follow-up or admitted to the
neurology ward32. A more recent audit of 38 persons with a first seizure seen in an A&E
department found that, of 22 people discharged, either with an appointment to see a
neurologist or a letter to the GP advising such referral, only 10 (45%) were seen by a
neurologist33. The mean wait was 21 weeks (range 644 weeks).

The NICE guidelines recommend that A&E departments should develop first seizure
protocols to ensure that people with suspected seizures are properly assessed and that, once
initial screening has been performed by a suitable physician, urgent referrals to a specialist
are made19.

Patient education and self-management

Most epilepsy publications stress the importance of information provision for people with
epilepsy1,18,20,34,35. Empowering individuals to take a more active role in their care is likely to
improve their understanding of their condition, develop greater awareness and management
of their triggers, encourage adoption of healthier and safer lifestyles and use scarce health
services more efficiently. Improved partnership between the individual and clinician in
devising a care plan should help to increase treatment adherence. It has been reported that
inadequate adherence to AED regimens occurs in 30–60% of patients36. Self-management
programmes, e.g. MOSES (Modular Service Package Epilepsy) have been shown to improve
knowledge of epilepsy, coping with epilepsy, seizure frequency and tolerability of AEDs37.

Conclusion