Women with epilepsy have revealed their vision for the future in An Ideal World for Women, a survey carried out by the national charity Epilepsy Action.
The women’s blueprint for future epilepsy services highlights the need for clear, relevant information in preparation for the major stages of their lives, and also includes their hopes for a better outlook for the condition.
The survey empowered the women to speak out about the continued inadequacy of current services. Despite the introduction of guidelines to improve the management of epilepsy in Scotland in 2003, and in England and Wales in 2004, many women say they are still not receiving vital preconception counselling, or specialist ante-natal care during pregnancy.
Epilepsy Action says that the survey 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 onset 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 2008.
The wide-ranging 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.
Alison Harker, (56) from Ely, Cambridgeshire, was newly married when she developed epilepsy at the age of 20.
She said: “I was horrified at the reaction of my consultant. He told me quite definitely that I couldn’t have children, and that I shouldn’t go to parties, stay up late or drink alcohol. I knew nothing about epilepsy, but I felt that I was being treated like a half wit and that I would have no say in the way I would live my life.”
However, Alison went on to disprove everything she had been told and has led a full and active life. She completed her qualifications to become a chartered surveyor, went on to have three healthy children and now runs her own business as a town planning consultant.
She said: “When I look back, I can’t believe that I was treated the way I was. It still shocks me.”
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. Furthermore, 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 (81 per cent) of respondents 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, 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.
Nicole 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.”