A new survey has highlighted the need for clear and relevant
information for women with epilepsy, in preparation for the major
stages of their lives.
New guidelines were introduced to
improve the management of epilepsy, in Scotland in 2003 and in England
and Wales in 2004. However, many women with epilepsy in the UK say they
are still not receiving vital preconception counselling, or specialist
ante-natal care during pregnancy.
The charity Epilepsy Action says its survey, 'An Ideal World for Women', shows that women's care continues to fall short of the national guidelines set down by the National Institute for Health and Clinical Excellence
(NICE). These include provision of advice and information on the start
of puberty, hormonal changes during the menstrual cycle, the menopause,
and hormone replacement therapy (HRT). The charity is demanding that
epilepsy services for women are included in the next NICE review due in
The survey was carried out among women with epilepsy
aged over 16 years and covered issues such as changes in seizure
patterns, and the effects of anti-epileptic drugs (AEDs), at key times
in their lives. It also looked at the quality and availability of
epilepsy care, and advice and information services provided to assist
them in managing their condition.
The first part of the
survey was directed at women aged 16-45 years. The results show that
over two-thirds (68 per cent) of the respondents who were pregnant, or
have had a baby in the previous five years, had not been offered joint
care by an epilepsy specialist nurse and midwife. Also 69 per cent of
these women had not been given advice about taking AEDs when
breastfeeding, and 68 per cent had not been offered information about
caring for a baby when you have epilepsy.
The second part
of the survey was aimed at women aged over 45 years. The results show
that over three-quarters of women had not been given any information
regarding epilepsy and its treatment in relation to the menopause and
HRT. Of the women who had received information, just under a third (32
per cent) had not been told that their seizure patterns could change
during the menopause, and 34 per cent had not been told that some AEDs
can affect HRT. In addition to this, 28 per cent had not been told that
some AEDs can increase the risk of osteoporosis.
Crosby McKenna, Epilepsy Action's development officer for women, said:
"It's clear from the results of the survey that women are ready and
willing to take action to improve their quality of life by effectively
managing their condition. Their only ‘ask' is that epilepsy care
services raise their standards and meet them half way, so that they at
least stand a chance of achieving this goal. Only then will women's
ideal vision for the future become a reality."