Page 506 - ILAE_Lectures_2015

The NICE guidelines do not specifically address models of care, or recommend what form of
service configuration can best provide the resources required. A Cochrane Review found only
one study investigating the benefit of clinics held at a specialist epilepsy unit25. The study had
a weak design and the review concluded that there was no robust evidence for benefit of the
specialist clinic. Nevertheless, several studies have shown that neurology opinions may
contribute useful advice to, or change the diagnosis in, patients previously under the care of
non-neurologists26,27, and the Association of British Neurologists states that neurologists who
specialise in epilepsy (or other conditions) are better at managing those conditions than
neurologists without such a specialism28. Whatever form the clinics take, there is agreement
that people needing specialist care for epilepsy should be treated by a specialist with an
interest in epilepsy. A study from the north of England suggested that older people with
epilepsy are less likely than younger people to be referred to specialist epilepsy services29.

The transition and transfer of epilepsy care for adolescents is specifically endorsed by
NICE19, SIGN3 and the NSF10. Transition from paediatric to adolescent services is a major
milestone for an adolescent with a chronic illness such as epilepsy, with adjustments in their
care and social needs as well as an evolving relationship with their parents and clinicians.
Although ‘transfer’ and ‘transition’ are often used interchangeably, transition is a more
dynamic process implying a planned and structured move from paediatric to adult care,
involving preparation and discussion with the young person, while transfer often represents
a single event of passing their medical care either back to their GP or to an adult or specific
adolescent service.

Specialist epilepsy care should provide provision for special groups, e.g. adolescents, patients
with learning disability and women with epilepsy requiring preconception advice. Such
services could conceivably be held either in the community or in specialist units and funding
may come from either hospital Trusts or Clinical Commissioning Groups.

New diagnosis
The function of the hospital service in people who develop seizures is to:

 Confirm the diagnosis
 Initiate treatment, if indicated
 Provide initial counselling and information to patients and their families
 Monitor the response to the initial treatment, and
 Refer the patient back to the GP if the condition is stable20.

The NICE guidelines19 propose that the diagnosis of epilepsy should be established by
specialist practitioners with training and expertise in epilepsy. (Misdiagnosis of epilepsy is
common, occurring in up to one-quarter of patients referred to a specialist clinic30 and in at
least one-fifth of people from primary care who were assessed by a specialist31; there may be
physical, psychosocial and socioeconomic consequences of a misdiagnosis.) After a detailed
history of the attack has been obtained from the patient and any eyewitnesses, a full physical
examination, including cardiac, neurological and mental state, should be carried out.
Appropriate investigations should be available where necessary. The guidelines stress that
information on how to recognise a seizure and first-aid for seizures should be provided to the
individual, to the family and to carers. Some information should be provided while the
diagnosis is awaited. Once epilepsy is diagnosed, seizures and syndromes should be classified
using a multi-axial diagnostic scheme. The decision to start AED treatment should be made
after full discussion of the risks and benefits, taking account of the person’s epilepsy
syndrome, prognosis and lifestyle. Treatment (where appropriate) should be initiated by the
specialist, who should also plan the continuation of treatment and manage, or provide
guidance for, withdrawal of AEDs.