Urgent reform putting safety at the centre of maternity and neonatal systems is needed to avoid “devastating consequences for women, babies and families” according to the Independent Investigation into Maternity and Neonatal Services in England report published today.
Baroness Valerie Amos, chair of the Independent National Maternity and Neonatal Investigation, who led the government-commissioned investigation, added that women need to be listened to and anti-racism and discrimination practices need to be embedded “at every level”.
The report, looking at maternity care nationwide, found fragmented and inconsistent maternity services, women not being listened to or believed leading to avoidable harm, racism, discrimination and structural inequalities, and services not designed to ensure consistent safety.
Despite the multitude concerns highlighted by the report, bereaved and affected families say it does not go far enough, and are calling for a full public inquiry into the NHS maternity system.
The current system has failed hundreds of families, with Donna Ockenden’s report on maternity services at the Nottingham University Hospitals NHS Trust, published last week, finding more than 500 mothers and babies were harmed or died.
Epilepsy Action also added that women and pregnant people with epilepsy face specific risks, sharing more about the work the charity is doing to reduce those.
Uncertainty remains
Alison Fuller, director of health improvement and influencing at the charity, said: “Pregnancy should be a time of hope, not fear.
“For every expectant parent, pregnancy should be a time of excitement about the future, not anxiety about whether they will receive the care they need. Yet for too many women with epilepsy, uncertainty remains part of that journey.
“Women with epilepsy are around ten times more likely to die during pregnancy than women without the condition, making access to high quality, specialist maternity care essential.
“Baroness Amos’s report is right in its ambition to improve maternity and neonatal care. It comes at a time when families across the country are rightly asking whether more can be done to ensure every woman and birthing person receives the care they need and deserve.”
Nation-wide problems with maternity
The information from the 450 families seen in person, 10,500 responses to the report’s call for evidence, and the 12 Trusts visited by Baroness Amos found women had been “dismissed when raising concerns”, were not treated with “kindness or compassion”, had suffered “pain and distress” because of inadequate pain relief during assisted births or caesarean section and had not been able to give informed consent due to poor communication.
People had faced racist comments, unfair or unequal treatment due to racism and discrimination and had not wanted to engage with services due to previous poor experiences.
Baroness Amos also detailed that inconsistent safety led to “avoidable harm and lifelong trauma”, at times “unsafe clinical environments” and “a lack of accountability from trusts when things had gone wrong”.
The fragmented system means the care people receive varies across the country, different medical teams aren’t always well connected, and information isn’t shared well between teams, leaving people having to “repeat sometimes very traumatic information”.
Report recommendations
Baroness Amos’s report made eight recommendations for improvements.
- Create a national Maternity and Neonatal Commissioner to implement the changes to the system
- Listening to women, birthing people and families
- Improving response and learning from mistakes
- Creating a Modern Service Framework to set out national standards of care
- Tackling racism, discrimination and inequality
- Improving accountability structures in the system and how it’s governed and regulated
- Improved culture, teamworking and stronger leaderships
- Delivering buildings and digital systems fit for modern maternity and neonatal care
The government responded by creating the UK’s first Maternity and Neonatal Commissioner role which it says will “begin the process” of improving services.
The Commissioner will co-chair, alongside the Secretary of State, the National Maternity and Neonatal Taskforce, set up earlier this year, comprising families, clinicians and other experts. The Taskforce will publish a “comprehensive National Action Plan” in December 2026. Epilepsy Action is part of the Expert Reference Group for the charity and third sector, supporting the Taskforce.
The government will also invest £41 million to tackle “urgent safety risks in maternity and neonatal facilities”, as well as £145 million committed since April 2025.
Alison Fuller said: “We know that better care is possible because we are already seeing it. Epilepsy Action has worked alongside NHS partners to develop practical tools and pathways that are helping maternity services improve care for women with epilepsy.
“We welcome the recommendation to develop a Modern Service Framework to drive improvement, but it will be important that this builds on existing good practice and makes it the standard for everyone.
“The women and families this report seeks to help deserve more than another set of recommendations. They deserve to see those recommendations make a real difference to their lives.”
Ockenden inquiry
The findings of this report largely mirror those published last week based on the Ockenden inquiry in Nottingham.
In her report, Donna Ockenden said: “This report demonstrates what ensues when leadership, governance and culture are not robust: poor practice is not investigated; learning is not integrated; and mothers and babies are failed by an organisation they should be able to rely upon absolutely during a period of acute vulnerability in their lives.”
Alison Fuller added: “Every family should be able to trust that maternity services will keep them safe. The experiences detailed in the recent reports are a reminder of the devastating consequences when that does not happen.
“The reports highlight the importance of listening to women, responding to concerns early, and ensuring services work together effectively. These are all essential for women with epilepsy and other complex health conditions.
“We must now ensure the lessons are translated into action, so that every woman receives the high-quality care and support she deserves, wherever she lives.”
Tell us about your experiences with maternity care: campaigns@epilepsy.org.uk
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