Power to the people
Why we need a comprehensive evidence base for women's maternity experiences
There is, in the UK, a long and proud history of women campaigning for better births. Ideas that we now take for granted - birth plans, birth partners alongside labouring women, water births - were once the subject of fierce debate and controversy.
But maternity campaigners have not just changed the practicalities of childbirth. They have significantly changed the culture of the medical profession. Concepts of choice and control, and the idea of partnership between patients and professionals are now part of the language of the NHS. But they stem, in large part, from the activism of women seeking better births.
The point is that maternity experience is not just about biology and physiology. Nor is it simply about professional competence and clinical effectiveness. As much as anything, it is about relationships between women and professionals. Or, if you like, between service users and service providers. And in those relationships there is, always, a power balance.
In medicine, power rests on knowledge. Health professionals undergo many years' training before becoming qualified. Once qualified they continue to refresh and update their knowledge. They have access to huge databases of research. Professional journals spread news and views. Conferences provide opportunities for networking and further learning.
It was easy, in the old days, for health professionals to use their knowledge to assert their power. Scientific expertise could always trump women's own instincts. Of course women had their own expertise - coming from personal experiences of pregnancy and birth. The NHS now commonly describes patients as "experts by experience". But before that phrase was invented, assertive women could be labelled as "troublesome" or "emotional". And patient stories could be relegated to the realms of "anecdote".
So how did women start to shift the power balance? The answer is that they organised. They started to build their own knowledge base, educating one another through antenatal classes that they ran for themselves. Coffee mornings were - before the days of online health communities - a more informal way to share knowledge and experience. Sympathetic midwives helped, arranging group visits to labour wards, and explaining procedures such as caesarean or episiotomy. In time, some women started to develop more specialist knowledge, around conditions such as hyperemesis and pre-eclampsia. Others started to break down old taboos - for example, opening up discussion of postnatal depression and other aspects of perinatal mental health.
It is an inspirational story - but it is a story that is not yet over.
Power imbalances within the healthcare system remain. And that continues to affect women's birth experiences. An obvious example was the deaths of mothers and babies in the care of the Morecambe Bay Trust - the subject of the Kirkup Inquiry which described "denial that any problem existed, and a series of missed opportunities to intervene that involved almost every level of the NHS". Another was the "cluster of deaths" at the Shrewsbury and Telford Trust, where mothers spoke of being ignored while trying to voice concerns during labour.
This ties in with evidence from the Care Quality Commission that one in five women (19%) who raised a concern during labour and birth felt that it was not taken seriously by healthcare professionals in charge of their care. And while some cases of harm or death may be inevitable in the risky business of childbirth, subsequent investigations can compound parents' distress by excluding them. The Each Baby Counts report revealed that "in a quarter of instances [of death or brain injury] parents were not made aware that a local review was taking place. Just under half the time, parents were made aware... but were not invited to contribute".
The reports mentioned above deal with worst case scenarios. But there are thousands more surveys, studies and academic research papers detailing all aspects of women's maternity experiences - good and bad. Some deal with experience of specific services. Others with experience of health conditions. Still others tackle the experiences of people who may be disadvantaged within healthcare and wider society.
Taken together, these documents offer a huge base of evidence on women's maternity experiences. The literature dates back over years, and comes from every corner of the nation and from multiple social and cultural perspectives. In a healthcare system where knowledge equals power, this is a mighty resource.
It is, however, not one that women can easily get hold of.
The evidence is produced by health charities, campaign groups, government bodies, patient voice organisations, universities, think tanks and more. It is produced at different times in different formats and published on hundreds of different websites. The Healthwatch network alone publishes its reports across 150 separate websites.
The medical profession understands the value of knowledge. That's why it marshalls clinical evidence into large scale databases that are made available as a matter of course to NHS staff.
When it comes to patients, though, the story is different. NHS England's strategies state the importance of being patient-centred. But it has not seen fit to put the evidence on patient experience into a single, searchable database. It is content to leave patients to work out for themselves how to get the evidence they need for campaigns, for antenatal education, for informed choice.
That's how power works.
Three years ago, we went to various national health bodies to make the case for a patient experience database. We were told that such a thing was not feasible - it would be too difficult, or too expensive. So we went ahead and built it anyway. We call it the Patient Experience Library. It contains over 40,000 documents on patient experience and patient/public involvement in healthcare. Several thousand of those relate to maternity.
We base our work on an understanding that in healthcare, knowledge is power. Individually, women seeking better births can rely on personal experience and personal assertiveness. But women together - over time and across communities - need to be able to draw on collective experience and shared knowledge. And for that, they need a comprehensive evidence base on maternity experience.
Having built the Patient Experience Library, we want to open it up - to patients, public, activists, researchers and, of course, health professionals. We remain hopeful that the NHS will at some point see the value of the resource, and will want to support our efforts. But in the meantime, we're open to discussions with maternity campaigners about how to mobilise the evidence, and put more power into the hands of women and their birth partners.
Miles Sibley is a Director of the Patient Experience Library - the UK’s first and only comprehensive evidence base for patient experience and patient/public involvement. The Library is run as a social enterprise - it receives no state funding and accepts no advertising. You can contact him here
