The All-Party Parliamentary Group (APPG) on Women’s Health held three separate webinars across the month of November to discuss prominent topics surrounding women’s health. The first of these was ‘The Cumberlege Review: First Do No Harm & What it Means for Women’s Health’.
Hosted by Jackie Doyle-Price MP, the webinar featured a panel discussion with Baroness Cumberlege and her team; Dr Clare Etherington, and Shazia Giani, who shared her patient perspective. The panel discussed the recommendations which came out of The Independent Medicines & Medical Devices Safety Review, and their implications for our healthcare system and for women’s care in particular. The report, which was due to be published in March 2020 but was delayed due to the pandemic, makes 9 recommendations on how the healthcare system’s ability to respond to concerns raised about the safety of these 3 clinical interventions:
- Primodos – a hormone-based pregnancy test manufactured and used in the 1960s and 70s to detect pregnancy by inducing menstruation in women who were not pregnant.
- Sodium valproate – an epilepsy drug, the use of which in pregnancy has been linked to an increased risk of developmental problems.
- Pelvic mesh implants – used in the surgical repair of pelvic organ prolapse and stress urinary incontinence.
The team reviewed a vast amount of evidence, including documents seized from the manufacturers of Primodos; written evidence from a variety of stakeholders including patient safety groups, clinicians, independent healthcare providers, manufacturer and suppliers, and oral evidence from campaign groups, healthcare bodies, academics, medical societies and Royal Colleges.
What emerged, according to Jackie Doyle-Price, were “heart wrenching” and included “intimate stories told with dignity and courage” by women, many of whom suffered damaged relationships, family breakdowns, career collapses and financial ruin because of the detrimental effect of the treatments on their health and wellbeing. The gathering of written and oral evidence showed how these women had been ignored. “The way that women talked to us, what really struck us, was that it was always ‘Thank you for listening.’”
While the report acknowledged that, “Most people do excellent work most of the time in the health service”, the stories of the women whose experiences had been ignored, in the words of patient Shazia Ginai, “Highlighted a systemic failure in the healthcare system…there’s a gaslighting phenomenon going on.”
The overarching theme of the webinar was ‘How do we implement the Cumberlege Review’s recommendations?’ However, Ms Doyle-Price said that unless these are implemented by the creation of a dedicated taskforce, “Nothing will happen…we are flying blind, and that is dangerous. In order for the recommendations to work, we need a taskforce…but the lack of response has been truly awful.”