Page 478 - ILAE_Lectures_2015

Chapter 51

Epilepsy clinic counselling

SUSAN USISKIN MBE

National Hospital for Neurology and Neurosurgery, Queen Square, London, and Epilepsy
Society, Chalfont St Peter, Buckinghamshire

The majority of patients seen at special epilepsy clinics have chronic refractory epilepsy. As
such, they represent a worse than average epilepsy group, some of whom may have special
psychological and social problems.

The need for skilled counselling within this group, in addition to ‘routine’ therapeutic
intervention, has been recognised. At the National Hospital for Neurology and Neurosurgery
epilepsy clinics a special counsellor is available to help address the problems commonly
experienced by these patients and their families.

Refractory epilepsy may cause difficulty in a number of areas described in the previous
chapter. Additional problems may arise in the patient’s ability to cope with daily activities,
accepting the diagnosis, and concordance with drug therapy offered. There may also be
special problems which affect women and also with sexual relations.

Referrals

Patients who in the opinion of the medical team might benefit on clinical grounds and who
live in the community (i.e. non-residential) may be referred for counselling. Referrals may
be made by neurologists, neuropsychiatrists, general physicians, epilepsy nurse specialists
and GPs. Patients may be referred from other hospitals and medical practices. Typical reasons
for referrals include:

 Anxiety
 Depression
 Non-concordance with treatment
 Need for emotional support
 Advice and information about specific areas of living with epilepsy, e.g. women’s issues,

safety in the home, etc.

Common problems include:

 Perceived stigma
 Social isolation
 Low self-esteem
 Misconceptions about epilepsy
 Work/employment issues
 Anxiety and low mood.