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Women’s Health Strategy: What it means for women with epilepsy

The Department of Health and Social Care has published the first-ever Women’s Health Strategy for England. Epilepsy Research UK welcomes the report and recognises the programme as an important step to tackling the gender health gap for women with epilepsy, who are disproportionately impacted by the condition. 

What is the Women’s Health Strategy?

This 10-year strategy aims to improve the health of women by setting out a range of commitments, including a plan to transform women’s health content on the NHS website and increase female participation in vital research. 

How are women disproportionately impacted by epilepsy?

Women are uniquely and disproportionately affected by epilepsy throughout all stages of life. Specifically, hormonal changes during puberty, pregnancy and the menopause can affect the underlying mechanisms of seizures, as well as the action of anti-epileptic medications. 

  • One-third of women with the condition have catamenial epilepsy, meaning they experience changes in seizure frequency over the course of their menstrual cycle.
  • Women with epilepsy are ten times more likely to die during pregnancy than those without the condition, with seizures being the most common cause of death in childbirth.  
  • Up to four in ten women discontinue their anti-epileptic medication during pregnancy, due to concerns about the effects of the drug on the foetus, increasing their risks of seizures.
  • During perimenopause, women with epilepsy may have an increased risk of seizures, with the use of hormone replacement therapy (HRT) alone associated with higher seizure frequency.  

The broader impact of these issues going unaddressed by research is immeasurable. Epilepsy in women affects everything, from education, independence, family life and career choices, to wider societal issues like costs to the NHS and welfare system. To address the gender health gap for all girls and women affected by epilepsy, more research in this area is urgently needed.

In recent discussions with our Shape Network PPI group, the impact of epilepsy on women throughout their lives has been a recurrent theme. This too has been identified in the early stages of the UK Epilepsy Priority Setting Partnership (PSP). With the publication of the Women’s Health Strategy report yesterday, NOW is the time to highlight this epilepsy gender health gap and the research urgently needed in this area.

Epilepsy Research UK are proud members of the Association of Medical Research Charities (AMRC) – the hallmark of quality research funding. The AMRC has outlined priorities in response to the Women’s Health Strategy – you can read them below.

Priorities outlined by the AMRC

1. Increase funding for research into issues of women’s health Women’s health research is currently underfunded, and there needs to be greater focus on medical conditions that disproportionately impact women.

2. Include women in basic and clinical research Underrepresentation of women in research and trials leads to data gaps which make it difficult to understand the relevance of treatments for the whole population. As a first step, demographical data reporting should be required in trial reporting, with disaggregation of results by sex where possible.

3. Target the outcomes of research to ensure more effective delivery of care for women Poor representation of women in research means there is often limited evidence about the safety and efficacy of treatments for women. A lack of understanding about differences in risks and symptoms also means diagnosis is often later for women, leading to worse outcomes. Health campaigns must be relevant for everyone, or at the least explicit in their target audience.

4. Ensure women are part of the teams conducting the research Women are underrepresented at senior levels in medical research, in both basic and clinical settings. This needs to be improved to ensure research and care can benefit from a diversity of ideas and methodologies.

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