Placing women’s voices at the centre of their care

It is very encouraging to see the UK government announcing its intention to develop a Women’s Health Strategy. Anyone who doubts the need for this just has to look back over the last year in the life of the NHS.

2020 is thought of as the year of covid-19. But it was also a year that saw a succession of large scale avoidable harm scandals—all affecting women.

In February 2020, the Paterson Inquiry reported on the criminal activities of Ian Paterson, who performed unnecessary breast surgery on thousands of women. In the same month, Bill Kirkup, who led the investigation into deaths in maternity services at Morecambe Bay, was appointed to carry out an independent review into avoidable harm in East Kent Hospitals’ maternity services.

In July 2020, the Cumberlege review of medicines and medical devices described the “anguish, suffering and ruined lives” of thousands of women affected by treatments including pelvic mesh.  And in December 2020, Donna Ockenden’s Emerging Findings report began to lift the lid on 1,862 reported cases of avoidable harm and death in maternity services at Shrewsbury and Telford.  

These harms were avoidable because the providers knew about them. Patients and bereaved relatives had been speaking up—sometimes for years. But no one had wanted to hear them.

Men have been affected too—for example as fathers and birth partners in the case of the maternity deaths. And in the aftermath of the harms inflicted by Paterson, and those described by Cumberlege, many husbands and partners have had to become carers.

The fact remains, though, that the brunt of the harm has been borne by women.  

Women’s voices at the centre

A consultation is now open via a call for evidence which lists six core themes, the first of which is “Placing women’s voices at the centre of their health and care.” This is undoubtedly the most important, given the disasters listed above. But how do we place women’s voices at the centre of their care?

Baroness Cumberlege described the women who contributed to her First Do No Harm report as “…well informed, knowledgeable, and research based. They never failed to ensure we learnt from them and were up to date with emerging developments. They are outstanding communicators and expert in the subject matter.”

Evidently, the problem is not with women not speaking up, but with the healthcare system not being willing or able to listen.

Opening the ears of our healthcare system

The NHS—from the Long Term Plan downwards—describes itself as “person-centred” and “evidence-based.”  

A healthcare system that wants to be both person-centred and evidence-based has to have a really good evidence base for patient experience. Alongside that, it needs a professional learning infrastructure to help translate the evidence into practice.  In these areas, the NHS is sadly lacking.

  • The NHS “National Core Content” contains the databases and journals deemed essential to underpin evidence-based practice, and made available to all staff.  Patient experience evidence is noticeable by its absence. 
  • Patient experience staff (PALS teams, complaints managers etc) are almost unique within the NHS workforce in having no professional qualification, and no systematic approach to continuing professional development. 
  • While medical research is steered through formal research prioritisation processes, patient experience research is largely uncoordinated.  No one has a strategic overview of the patient experience evidence base, so time and money are wasted on duplicate studies while big gaps in the evidence base are ignored. 
  • Clinicians have analytical and diagnostic tools to help ensure that practice is evidence-based.  Analytical tools for patient experience work are, by contrast, few and far between.  

Baroness Cumberlege, in her First Do No Harm report, referred to the tendency of medical professions to dismiss patient feedback as “anecdotal evidence.” She said that patient experience “must no longer be considered anecdotal and weighted least in the hierarchy of evidence-based medicine.” 

We agree, and are working to address the fundamental system weaknesses outlined above. Action on these fronts will be of benefit to all patients. But since women, from recent evidence, bear the brunt of avoidable harm in medicine, it could benefit them most of all.  

So a women’s health strategy must address these issues. A strategy that aims to place women’s voices at the centre of their health and care must not simply require women to carry on shouting into a void. It should require system leaders to start taking patient experience more seriously: treating it as evidence, and building it into practice.

We call on NICE, Health Education England, the National Institute for Health Research and NHS England to work with us on these matters.  They set the tone, they set the culture, and they need to set a lead in placing women’s voices at the centre of their health and care.

 The call for evidence for the proposed women’s health strategy remains open, and the deadline has been extended to the 13th June 2021

Miles Sibley is a Director for the Patient Experience Library—the national evidence base on patient experience and involvement. 

Rebecca Steinfeld, Head of Policy at National Voices, England’s leading coalition of health and care charities, working together to democratise and humanise health and care

Competing interests: MS is a Director of the Patient Experience Library. The library is entirely self-financing, it receives no grant funding and accepts no advertising. RS none declared