In 2012, we did the third of our ‘An ideal world for women’ surveys. We carry out these surveys every five years. This is to keep us up-to date on the views, opinions and experiences of women with epilepsy. Receiving the right information at the right time supports women to make informed choices about their care and treatment.
The survey lead to the launch, in 2013, of our HealthE mum-to-be campaign, providing support for pregnant women with epilepsy.
We asked women to let us know about the levels of care and support that have been available from their health professionals. This included information received on a range of different women’s issues within epilepsy. The wide-ranging survey was carried out among women with epilepsy aged over 16 years. It covered areas such as changes in seizure patterns and the effects of anti-epileptic drugs.
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 Diary of a New Mum with Epilepsy
Lisa has just given birth and shares her experiences of how living with epilepsy shapes her life with husband Matt and new baby daughter Rhiannon.
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.”
If you have any questions about epilepsy, you can contact our Epilepsy Helpline on freephone 0808 800 5050 or by email to firstname.lastname@example.org.
Two thousand contacts were identified and questionnaires were mailed to the women with their copy of Epilepsy Today, Epilepsy Action’s magazine for members. The questionnaire was also available on the charity’s website for download or for completion online. 537 usable responses were received, giving a 26.85 per cent response rate.
Section 1 – for women aged between 16 and 45
The three most important issues for women in this group were:
- The risk of epilepsy/effects of anti-epileptic medication (AEDs) on the unborn child.
- Avoiding an unplanned pregnancy.
- The risk of a child developing epilepsy.
- 85 per cent of women reported being aware that some AEDs interact with hormone-based contraceptives.
- 51 per cent said they had been given information that their AEDs could make hormone-based contraception less effective.
- However, 9 per cent of respondents were told that their AEDs would not interact with their hormone-based contraception.
- 25 per cent stated they had not been given information.
- As many as 82 per cent were aware that in very rare cases AEDs can cause birth defects.
- 25 per cent stated they had not been given any information relating to pregnancy and AEDs.
- 68 per cent of women who were pregnant or have had a baby in the previous five years were not offered joint care by an epilepsy specialist nurse and midwife.
- 69 per cent had not been given advice about taking AEDs when breast feeding.
- 68 per cent had not been offered information about caring for a baby when you have epilepsy
Section 2 – for women aged over 45 years old
The three most important issues for women in this age group were:
- AEDs and osteoporosis.
- Changes in seizures during menopause.
- Interaction of AEDs and hormone replacement therapy (HRT).
81 per cent reported that they were not 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 were not told that seizures patterns could change.
- 34 per cent were not told that some AEDs can affect HRT.
- 28 per cent were not told that some AEDs can increase the risk of osteoporosis.
Section 3 – all respondents
In general, respondents did not feel that they received information at the appropriate time for them. However overall, information relating to contraception and pregnancy seems to be given out more frequently than, say, information on the menopause and osteoporosis.
- 39 per cent reported that they felt well informed about their epilepsy and treatment,
- A further 10 per cent said that they trusted their doctor to make the choices about their epilepsy and treatment.
- However, 52 per cent stated that they would like to be more informed so that they could either discuss their epilepsy and treatment with their doctor or ask for a review/change to their treatment.