Pelvic mesh scandal is what happens when men with power ignore women

Julia Cumberlege’s report into avoidable harm inflicted by the healthcare system exposes an institutional inability to listen to patients in general and women in particular.

Her investigation into decades of failure batters the reputation of the NHS, professional bodies, regulators, manufacturers, private providers and policymakers.

Related: 'It took years to get diagnosed': the women who were not listened to

Established by the then health secretary, Jeremy Hunt, in 2018 to examine how the healthcare system in England responds to reports about harmful side-effects for medicines and medical devices, it examined three notorious cases of treatments taken by women: hormone pregnancy tests associated with birth defects and finally withdrawn in the 1970s; the anti-epileptic drug sodium valproate, which can harm children during pregnancy; and vaginal mesh implants, a cause of crippling, life-changing complications and unbearable pain.

The review only came about because of decades of relentless campaigning by patient groups.

The story Lady Cumberlege uncovers is not of rogue actors or localised problems but systemic, endemic failure to listen to, or respond to the needs of, patients. After speaking to hundreds of women, a pattern emerged of not being empowered to make informed choices, not being heard, not being believed by arrogant, intimidating doctors, a lack of understanding of women’s health and feeling abandoned. Professions and institutions were in denial, resisting change despite mounting evidence of serious problems.

Related: The pelvic mesh scandal makes it clear: doctors must declare any funding | Margaret McCartney

At the heart of these scandals is a refusal to listen to the people who were suffering. Doctors simply would not believe women with mesh implants were enduring excruciating pain and many other consequences, including contemplating suicide. Much of this revolved around male doctors dismissing the concerns of middle-aged women.

This left the patients feeling belittled, ignored and above all disempowered. Any notion of shared decision-making was destroyed. This same dismissal of the voice of the patient is evident in the repeated failures uncovered to obtain anything approaching informed consent for treatment, with little or no information provided on options or risks. Astonishingly, Lady Cumberlege reports that even now hundreds of women are becoming pregnant and taking sodium valproate while unaware of the risks.

While clinicians have undoubtedly been getting better in recent years at listening to their patients, there is still a lot of room for improvement. The latest annual survey of around 75,000 hospital inpatients in England by the Picker Institute, released this month, reveals that almost half of them want to be more involved in decisions about their care. Barely one in three were confident that they could talk to someone on the hospital staff about their worries and fears, and only half felt they got enough emotional support.

Although a survey of 68,000 cancer patients in England published in June revealed the vast majority were satisfied with their care, only 38% said they were given a written care plan setting out their needs and goals. The target is 100%.

Research among users of community mental health services shows that only half felt fully involved in decisions about their care and more than a quarter complained of not being treated with respect and dignity.

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This is all about power in the system. Despite so much excellence, the widespread culture of suppressing the patient voice – and refusing to listen to staff who raised concerns – provides the fertile soil in which the next patient safety scandal will develop.

Lady Cumberlege champions the idea of a patient safety commissioner, which would at least mean people would know who to complain to, but the solution lies in changing the culture of the professions. Ultimately, it requires clinicians to cede some of their power to those who depend on them.

• In the UK and Ireland, Samaritans can be contacted on 116 123 or email jo@samaritans.org or jo@samaritans.ie. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at www.befrienders.org.