Women have been campaigning for improvements to maternity care for more than 60 years. Although several past national reports have pointed the way to improving maternity services, change is difficult and has often proved elusive. Ingrained, historic, societal attitudes to women have shaped the degree to which women have, over time, been ‘allowed’, or not, to determine where they will birth, and in what circumstances.

More broadly, the same issues that affect the NHS generally (questions of funding, recruitment, staff retention, the challenges of implementing evidence-based healthcare when new evidence merits changes, etc) affect maternity care.

The National Review of Maternity Services (2016) made recommendations calling for personalisation of maternity care, and partnerships with professionals that put women in more control of their care. Networks, both established and new, are playing an important role in progress towards this.

Maternity activism past and present

Maternity activism in the UK has a rich history of grassroots power seeking to make maternity services better (outlined, for example, in articles by activist Mary Newburn and historian Angela Davies). Past and present, women and families have made important contributions to campaigning (‘shouting from outside’), committee work (‘inside the boundary’ between community and services), serving on research steering groups, and fundraising for particular parts of services and charities.

There is considerable overlap of people between these roles: volunteer commitment among ‘experts by experience’ is often deep and long-lasting. Some cross over into (paid) research and policy roles. Others serve as NICE lay members, or on national projects such as the National Perinatal Audit.

More recently, new communities of ‘maternity people’ have emerged on Facebook and Twitter. These provide inspiration, ideas, a sense of community, and impact, at local and national policy level. They bring together women and families, midwives and doctors, researchers and policy people, who want to make maternity care the best it can be. For example, maternity people online are:

• Sharing best practice in maternity care and service user involvement. This speeds up change, and opens new possibilities - such as #theatrecapchallenge, which sees staff put their name and role on their cap in maternity theatres to create a more friendly and easy-to-understand experience for the mother and her companion.
• Widening access to high quality research information, empowering service users, and influencing policy. Jeremy Hunt recently announced new measures to establish ‘continuity of carer’ in maternity; after years of campaigning, social media helped bring it to the top of the policy agenda (#ContinuityofCarer).

#MatExp and National Maternity Voices - the power in collaboration and co-production

#MatExp is a social media movement founded by an obstetrician working with a group of service users and Nutshell Communications (developers of the 'Whose Shoes?' approach to personalisation and co-production). It is having a huge impact on the acceptability, pattern and development of service user involvement. Since 2014, over 50 #MatExp workshops have been held in the UK - bringing together women and professionals on an equal, respectful, basis to develop collaborative solutions to improve maternity care.

#MatExp has considerable social media reach and influence. It has a Facebook group with 3,400 members, including women, midwives, researchers, doctors, maternity advocates, and doulas, and about 1 million Twitter impressions a day, with tweets and retweets from around the world. It has also generated interest at national policy level, with ‘Whose Shoes?’ games being used in stakeholder events during the national maternity review in 2015.

NHS Maternity Voices Partnerships (MVPs) are local and grassroots groups of health professionals, women who use maternity services, commissioners, and charities and volunteer organisations. They are local advisory and action bodies that advise on maternity commissioning, monitor and collect feedback on services, and lead on co-design and co-production. They are proud to be part of the #MatExp movement. Values of inclusivity, regard for the stories of all women and families, respectful challenge to services, and awareness of research evidence are at the heart of the local work of NHS Maternity Voices Partnerships around the country.

National Maternity Voices (NMV) is a new national group that brings together MVPs in a powerful network. The latest maternity commissioning guidance includes NMV as a ‘go to’ source of information for maternity commissioners. The NMV team has launched a co-produced ‘Maternity Voices Toolkit’ and argued successfully to keep involvement local. NMV has also facilitated regional and national contributions - for example London recently held a successful ‘MVP development day’, and other regions hope to emulate the approach.

Does it make a difference?

Sharing power – seeing working with women and families, to improve care through co-design and co-production, as part of the job – is ethical. It is the right thing for midwives and obstetricians to do.

It also makes a practical difference. Locally, women give their feedback about their experiences of care to other women. There are birthing rooms, clinic rooms and wards that look different, and services provide information that is more accessible to women, because women and maternity staff co-designed them (some case studies are here).

Through communities including #MatExp and MVP networks, news of best practice spreads and women discuss things they might raise locally and collaborate with professional colleagues to pilot. This can be especially helpful when there is slow implementation of new evidence, with local inertia or even resistance. For example, if women decide they want skin-to-skin for mother and newborn baby at caesarean section and know it is possible elsewhere, then this can help drive change.

Sustaining involvement over time - developing long-term projects and supporting volunteers - needs a structure. Maternity Voices Partnerships and National Maternity Voices are especially important for this.

Of course, Maternity Voices work is not always easy and effective. Involvement could always be more diverse. In this maternity is no different from any other health sector, and as a community we are working on this. We are immensely proud to be living the vision of the NHS constitution’s ‘right to involvement’, and working constantly to do it better.

‘You have the right to be involved, directly or through representatives, in the planning of healthcare services commissioned by NHS bodies, the development and consideration of proposals for changes in the way those services are provided, and in decisions to be made affecting the operation of those services.’ (NHS Constitution).

What next? Co-designing quality care

‘The new care system is one that is co-designed with the patients’ communities and carers who are getting the help. They have better ideas than the people providing care of what that care should look like. It’s listening to and incorporating the voice of the people served everywhere in all phases of design . . . one of my key pieces of advice is to get the patients’ families, carers, community in the room, regard them not as tokens, not as people who are giving you input, but as absolute partners in the design and re-design of the system of care.’ Don Berwick, speaking at the Kings Fund, February 2016

Power is the condition of being taken seriously. Power is having a voice that can influence what actually happens - that can contribute to and cause change. It can be very satisfying when something that service users have worked for over years comes to fruition – especially so when services present the change as a necessary change, and part of ongoing quality improvement. Maternity activists know this well: that collaborative working as equals means a whole team achieving meaningful results together.

The change Maternity Voices and #MatExp people (women and families, midwives, doctors, researchers and others) want to see now – the change that #MatExp is helping to bring about – is that it feels both safe and exciting for maternity professionals to invite and act upon the views of women and families. And for all to work together collaboratively as equals to use those views - along with research evidence, and the evidence-based views of professionals - to develop better services providing more individualised maternity care.

Catherine Williams is a founding committee member of National Maternity Voices, writes at birthandbiology.wordpress.com and most recently published in bmjonline with obstetrician Andrew Weeks. She currently holds an interim role as a local Healthwatch policy manager. She remains an active service user member of her local Maternity Voices Partnership and is a NICE Fellow 2016-19.

Laura James is a founding committee member of National Maternity Voices, an NCT Antenatal Practitioner, and active service user member of her local Maternity Voices Partnership. She was recently appointed lay co-chair of the London MVP strategy group.

Florence Wilcock, #MatExp co-founder, is an obstetrician at Kingston Hospital and clinical co-chair of the London MVP strategy group.

Lisa Ramsey is a founding committee member of National Maternity Voices, chair of her local Maternity Voices Partnership, and now Service User Policy Manager in NHS England’s Maternity Transformation Programme team.

Further reading:

Human rights in childbirth - Birthrights letter to the national maternity review, 2015

Humanising birth – does the language we use matter?

Understanding birth – an evidence-based account

History of birth – an account by a US author, but internationally relevant

Co-production - an article on the theoretical basis of the approach

Co-creation in community health services - a 2016 literature review