A couple of days ago, international breastfeeding expert Dr Jack Newman posted this on his Facebook page:
“On January 29 2016, the Lancet held a symposium on breastfeeding and its importance. Some big name speakers were there, including Dr Nigel Rollins, who is with the World Health Organization Department of Maternal, Newborn, Child and Adolescent Health. Dr Rollins spoke passionately about the importance of breastfeeding. Here are three quotes from his address:
Quote 1: “We have a growing body of evidence to support breastfeeding and as part of our review we came to be aware that women who want to breastfeed do not have the support that they often need. Gaps in knowledge and skills among health care providers often leave women without access to accurate information and support … investments to support breastfeeding are marginal and far from adequate.”
Quote 2: “Breastfeeding practices are highly responsive to intervention…
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This week I’m off to the East Midlands to facilitate implementation of the guidance on setting up Maternity Voices Partnerships. A great blog Catherine that will go on giving for months and months, if not years. And thank you for the plug for my article!
I felt honoured and inspired when I read Mary Newburn’s article in the March 2017 edition of MIDIRS Women changing maternity services.A look at service user involvement in the UK. It’s a love letter to a movement with a long history, an active present, and an important contribution to make to Better Births implementation.
It is so easy, as we know in the MSLC and now Maternity Voices Partnerships (MVP) movement, for there to be confusion between engagement (focus groups and similar), and real involvement. We experience – or work for! – real and sustainable involvement in multidisciplinary forums. Local partnership groups, in which service users serve in equality with other members. In which recent service users are mentored by their peers to stay and become advocates and leaders.
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I met so many great people at the Sydney conference. A mix of new contacts and researchers and midwives from Australia, New Zealand, North America, Sweden, Norway, India, Singapore, the Netherlands and the UK.
Sheena Byrom and I ran a workshop to introduce Midwifery Unit Network. A small group of midwives and a childbirth educator are going to set up Midwifery Unit Network Australia with the support of the Australian Midwives Association.
I gave a presentation about service user involvement in maternity services in the UK and about voluntary services. Here is my presentation, given 12 October 2016:
Following the keynote address by Professor Eugene Declecq, I now proudly consider myself a ‘persistent maternity activist’. Many others have been around a while working for change in maternity services. Persistence and activism both matter!
For those interested to learn more about the conference, the Twitter hashtag is #normalbirth16. The Abstract booklet is also now available at:
Conference delegates were encouraged to knit squares for blankets at the Yarning table. I got started on Day 1 and knitted a couple. Hundreds were produced in total.
There was a positive focus at the conference on honouring the Aboriginal and Torres Straight Islanders’ elders past and present. We learned about and were asked to support the New South Wales Aboriginal Nursing and Midwifery Strategy which supports Aboriginal people to undertake midwifery degrees.
Image copyright Laura James, who presents on MSLCs at Women’s Voices Conference 2016
South London MSLC network
Yesterday morning, I was bound for St Thomas’ Hospital near Waterloo station, for the south London maternity services network gathering. It’s our informal meeting for service user reps and interested others across south London, where there are 10 MSLCs in total.
St Thomas’ is the one that looks across the Thames to parliament. (Or the hospital that you see from The Terrace if you go to a smart parliamentary reception.) It’s the institution I am linked with via my work for Kings College London’s Women’s Division and CLAHRC South London. Armed with cake and tweeting en route, delayed by a late train and a mix up over the venue, I arrived to find mums with babies and two MSLC chairs already chatting. More and more people arrived. Until…
…we had a gathering of:
- Two from St Thomas’, the co-chairs who invited anyone keen to stay on for lunch and to observe their MSLC meeting immediately afterwards.
- Two from Bromley MSLC, where there is some great succession planning going on.
- Two from St George’s, the current and immediate past Chair. Rosie Goode came with a commitment to get service users involved in the Personalisation and Choice Pioneer project in SW London, and happy exhaustion, having been right-hand woman to Milli Hill in organising last week’s first Positive Birth Movement Helen Gray IBCLC, brought PowerPoint slides to share with others, promoting ‘Women’s Voices’ work and MSLCs.
- Two from Kings’, where one leads on social media and another leads the meetings.
- A local mother who is setting up Everywomen came along with her baby.
- Epsom and St Helier was represented by Maria Booker, whose paid work is with BIrthrights. (Birthrights CEO, Rebecca Schiller’s new must-read, Why Human Rights in Childbirth Matter, was launched last Thursday by Pinter and Martin at Effraspace.)
- Midwife researcher, Wendy Carter, who came to talk about hypertension in pregnancy, how much women know about it and what MSLCs and service users think might be helpful in raising awareness and improving woman-centred care.
With me, that was 12 of us!
We started by asking what people wanted to get out of the meet-up. Needs and priorities were many and varied:
- Updating on the refreshed guidance for maternity partnerships (MSLCs), which is in development, sponsored by NHS England.
- Finding ways of marketing awareness of, and support for, the MSLC and succession planning.
- Concern about the quality of postnatal care. Women feeling traumatised by poor support.
- Need for more peer support postnatally.
- Networking with other people and other MSLCs.
- Increasing diversity and involvement in the MSLC.
- Tips on how to run an effective MSLC and how to escalate issues / involve other agencies, such as the local authority, if necessary.
- Sustainability and Transformation Plans (‘STPs’) see the following link https://www.england.nhs.uk/ourwork/futurenhs/deliver-forward-view/stp/
- SW London as a Maternity Choice and Personalisation Pioneer see the following link https://www.england.nhs.uk/ourwork/futurenhs/mat-transformation/mat-pioneers/
- How much MSLC budgets are/should be to cover community involvement activities.
By the time everyone had said hello and expressed their needs and priorities there was just an hour of the meeting left, a long list of fascinating and varied topics to consider AND a research project to explore.
Updated Maternity Partnership (MSLC) Guidance
I was able to share the updated (still draft) guidance, 2016 Guidance for Maternity Systems: Setting up and sustaining a Maternity Voices Partnership, with everyone. There should be a sharing version available by 12 November, the date of the NCT maternity services service user involvement day, being held in Bristol.
Among our group today there was a good deal of support for a re-launch of partnership working and support for the new generic name: Maternity Voices Partnership.
There was warm enthusiasm for clear guidance for commissioners, that MVPs need to be ‘well led and properly resourced’.
The draft guidance emphasises that there is a new commitment to the values and practice of co-design and co-production, recognition of need for community development work, and shared training to develop this way of working in every area through local maternity systems. Everyone hoped that this impetus would move good practice forwards.
With so much happening in terms of strategic planning for maternity services in 2016 and the rights of service users to be involved in both shaping ideas and in decision making, guidance will be shared in draft while it progresses through the formal ‘gateway’ process for formal publications. This will speed up getting it into the public domain. NB: The ‘collective voice’ of women, families and communities should be ‘integral … now, at this formative stage’.
There are around a dozen practical documents in the guidance: such as the principles of co-design and co-production, tips for commissioners setting up an MVP, induction materials for MVP members, a terms of reference template to be adapted locally, help to get started in using social media, a voluntary organisations directory, training ideas and troubleshooting Q&As.
Sustainability and Transformation Plans
There is so much strategic planning going on at different levels. The Sustainability and Transformation Plans (flagged up at the start of the meeting) are one example. Another example, discussed at the Guy’s and St Thomas’(GSTT) MSLC meeting, later, was a GSTT Better Births board which coordinates developments from a range of working groups each following up different groupings of the 28 recommendations in the Better Births report.
My contact at NHS England feels it is impossible to give definitive guidance on which specific planning groups and plans MSLCs (or MVPs), should be involved with. Things are changing fast (and it is easy for service users who volunteer, or are paid to work part-time on their MSLC, to feel overwhelmed by demands). Rather than give a blue-print list, her suggestion was to create a culture locally where service users are assertive and valued; where they are involved. This means getting managers, and different groups and bodies within, and above, the local maternity system, to explain significant planning mechanisms and the timeframes for involvement and decision-making. It won’t be possible to participate in a meaningful way in all the development initiatives, but there should be transparency, clear induction for MSLC/MVP members and regular reporting, so that service users can say when and how they want to be involved, and be worked with as equals.
Information support and care for women with hypertensive disorders
Midwife, Wendy Carter shared key findings from her PhD study Speaking up, Listening and Responding: an in-depth qualitative case study exploring factors affecting women with signs and symptoms of pre-eclampsia seeking help. The themes emerging from the research so far, resonated with MSLC members. Despite having had children and being involved in maternity for quite some time, several said that their own knowledge about hypertensive disorders in pregnancy was quite limited. Information published by Action on Pre-Eclampsia (APEC) was praised as useful by one antenatal teacher. Ideas about sensitive and effective times and places to address the gaps in knowledge were passed on to Wendy.
Practical tips for chairing and co-production
Helen Gray emphasised the importance of cutting to the chase in meetings and spending time on the important substantive topics.
Rosie Goode, suggested having one main topic per meeting, so that some real work could be done, rather than just skimming the surface was valuable.
Laura James described how in Bromley parents are invited via the Facebook group, Twitter and posters in the hospital to attend a get together in a community setting or someone’s home to share their positive experiences and any concerns. The feedback is written onto coloured post-it notes and stuck onto sheets labelled ‘Congratulations’ and ‘Considerations’. These are taken seriously by managers. The feedback is displayed publically in the hospital. Staff who are praised by women and families for their care get recognition for it. Negative feedback is also fully acknowledged and actions are planned to address it.
At the GSTT MSLC meeting a consultant midwife at St Thomas’ also described taking action to address staff behaviour after listening and hearing negative feedback from women at the debriefing service the trust provides.
The value of the chair (or chair team) planning consciously before a meeting what they want to achieve, was also discussed. And working to the principle of ‘You said, we did’ to ensure that actions are both planned and reported.
Everyone present consented to photographs being taken and their contact details and social media names being shared with the name of their MSLC, to facilitate networking in between meetings.
We agreed to share documents across the network, such as MSLC presentations, ideas, good practice tips, annual reports, meeting agendas and minutes.
The next meeting will be in November in the same venue as there was plenty of space for adults and South London MSLC network meeting.
And the rest…
Quite a lot more was shared, such as…
Women’s Voices Conference 2016 – This really exciting event organised by South London mother and MSLC member Michelle Quashie, on 1st October, can be booked at https://www.eventbrite.co.uk/e/womens-voices-conference-2016-tickets-25598971212
Vaginal breech – Rosie Goode said that GSTT had recently provided vaginal breech birth training for quite a lot of their staff, and so St Thomas’ was a good place to book for women with a persistent breech baby wanting a vaginal birth, plus other south London trusts could learn from this example.
Booking with a trusted and admired home birth team if out of area – Emily Levis (Stowe) said she was aware of women outside of the catchment area for St Geoerge’s Hospital were wanting to book with the St George’s home birth team, and what was there right in this regard. On reflection, it would be useful to get view from Birthrights on this question. It occurs to me that if they are close to the boundary and/or the quality of service offered by the service covering their street/postcode is demonstrably less good in some way, they might have a good case to make. But ask the experts!
Please add to this if you were at the meeting.
 Collaboration for Leadership in Applied Health Research and Care, is a research initiative ‘Investigating the best way to make tried and tested treatments and services routinely available.’ Find out more about the maternity research. Follow @CLAHRC_SL
I’ve been asked to write about my involvement with NCT. When and how I got involved with research and maternity services activity. I’ve been asked how NCT has gone about having influence, so have been sharing this kind of information with women in other countries recently. And I will add more. Let me know if you have any questions or feedback.
- When and why did you first get involved with NCT?
My mother was an NCT member in 1958. (She just missed out for the birth of my older sister who was born in 1956.) Mum talked about labour and birth to her young daughters quite a lot. There were two more babies after me, so pregnancy and breastfeeding were fairly prominent in our lives. I recall my mum explaining to me, aged about six, how useful pelvic rocking on all fours can be for a back ache during labour. Mum had all four of her babies at home. Erna Wright was her NCT antenatal teacher. I am very proud to say that Erna Wright, who later wrote a book about her approach to labour preparation The New Childbirth (1964), was present at my birth. To some extent I guess she was taking the role of what we know call a doula.
Although Erna lived until 2004, I regret to say that I never met her. It turns out she was cooking and running a restaurant in Camden Town in the 1970s. She also trained as a psychotherapist. She came to Britain as a Jewish refugee and gave so much. Her Guardian obituary is well worth reading. https://www.theguardian.com/news/2004/sep/08/guardianobituaries.health My own mother, and other women like Erna Wright, inspired me to get involved with NCT. At 16, I chose Sheila Kitzinger’s book Some women’s experiences of childbirth as one of my end of post-GCEs prizes. I was hooked on childbirth as a women’s issue and exciting process from then onwards.
- When and how did you get involved with NCT research and/or maternity services activity?
I had my first two babies while I was still in my teens and then, aged 20, in 1979, I started training as an NCT antenatal teacher. This involved reading research. I remember reading radical works such as Marjorie Tew’s statistics on the outcomes for babies born at home (or in planned home births) compared with those having all their care in hospital. I was very moved by the work of Doris Hare, the American Childbirth Educator who wrote The Cultural Warping of Childbirth. See http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1893087/
I was also exercised about breastfeeding having had difficulties feeding my firstborn. I devoured The Infant feeding Survey. My NCT antenatal teacher training introduced me to all of these reports. I was fascinated and inspired. (I have done a quick internet search to check when the Infant Feeding Surveys started. Sure enough, I discover that “The Infant Feeding Survey (IFS) has been carried out every five years since 1975 and the 2010 survey was the eighth time the survey has been conducted.” So I was reading the very first of these fantastically valuable reports.)
With another local woman, a breastfeeding counsellor who moved into the area already qualified, we set up the Grange over Sands Branch of NCT. I guess the first activity we undertook to influence maternity services locally was to contact the Community Health Council about the quality of support for breastfeeding.
Much later, after taking A levels at an adult college and six years at university, first reading Sociology at LSE and then working on social research at Essex University, I joined NCT staff as National Secretary Elect in 1988. Hanna Corbishley was the retiring National Secretary and I recall how every Friday afternoon when the British Medical Journal was delivered she would sit and read all the relevant news and articles. Having read a lot of social research and some epidemiology during my university years, I started to become a frequent reader of biomedical research.
NCT had it Research and Information Group at that time, a committee of volunteers, some of whom had health professional training. Members were carrying out a survey of women’s experiences of dirty hospitals and postnatal infection. The study was used for lobbying and is referred to in the Health Select Committee Maternity Services inquiry of 1991. I produced a good deal of the evidence that NCT submitted to that inquiry, and have worked for NCT using evidence to improve maternity services, and producing evidence, ever since.
- What have you learnt from the different projects you have been involved with?
I have learned that there is much to be gained for NCT by doing research which it leads and has freedom to design according to the priorities of women and families, and its members. There is also much to be gained from working collaboratively and being a co-investigator with eminent researchers and representatives from many different disciplines and perspectives.
I value the research I carried out with an NCT colleague on postnatal care (Left to your own devices: The postnatal care experiences of 1260 first-time mothers, Newburn and Bhavnani, 2010) This was ‘service user-led’ research and important for that reason. Sheila Kitzinger established that precedent in NCT with Some women’s experiences of episiotomy, and we followed it in the 1990s with an NCT study of Rupture of the Membranes.
I was also pleased to research NCT’s antenatal education from the perspective of women and men using NCT services (Preparing for Birth and Parenthood: Report on First-Time Mothers and Fathers Attending NCT Antenatal Courses, Newburn, Muller and Taylor, 2011). I wanted to communicate to the world something more about what NCT courses were all about, as well as demonstrating how women and men experienced the courses and the preparation using statistical data and testimonies.
I also value very highly having been a co-investigator on studies run by leading researchers, such as:
- The National Sentinel Caesarean Section Audit in 2001 CS National Audit, and
- The Birthplace in England Programme 2007-2007, including the prospective cohort study (2011) in (Perinatal and maternal outcomes by planned place of birth for healthy women with low risk pregnancies: the Birthplace in England national prospective cohort study. BMJ 2011;343:d7400. http://www.bmj.com/content/343/bmj.d7400 see also https://www.npeu.ox.ac.uk/birthplace/results )
I’ve learnt from contributing to these influential studies, and to the Parents of premature babies project (POPPY), Cochrane reviews (pain relief in labour) and NICE guidance and The Lancet Midwifery series that service users really can influence and fundamentally shape the development of new evidence-based knowledge by being involved in the design, analysis and the writing up of studies. The image above is from an interview for the international launch of The Lancet Midwifery series (see link above).
4. How do you feel they have contributed to improving care for parents and families?
I feel that I, and the work of NCT generally, has contributed substantially to maternity care that takes account of the social and psychological impact as well as biomedical ‘outcomes’. The way services are structured and delivered, for example offering choice of place of birth, providing support for breastfeeding no longer separating mothers and babies and now encouraging skin-to-skin care, aiming to provide continuity of midwifery carer, are some examples.
The ideas of ‘woman-centred’, ‘family-focused’, ‘family-centred, and ‘personalised’ care are so important. These concepts are now very widely used in the literature and evident in practice, even though there is still so much more to achieve. The principle of ‘patient and public involvement’ in research, in policy and in planning and monitoring of maternity services is embedded. We at NCT have helped to do that, working as a movement, sharing our knowledge and passion. Supporting each other and new generations of activists and parent advocates.
5.What would you say to anyone who is feeling nervous about becoming a user rep?
You can do it! You will enjoy it! Find a few contacts who you can talk to – both those who have a bit more experience and new-comers going through the same kind of steep learning curve you will experience. Join the Facebook group NCT leaders. Network, browse the web, sign up for alerts, make a group of influential friends, look out for training opportunities. Know your limitations and practice saying ‘No’. You don’t have to be Superwoman. As well as making a difference for other women and families, it’s great for your own personal development and for your CV.
My thanks to Rachel Plachcinski, NCT Research Engagement Officer, AKA @stroppybrunette, who posed the questions and prompted me to write this. The questions have been sent out to many other NCT activists and I look forward to hearing their stories and reflections. I can’t make it to the NCT’s annual gathering for volunteers and practitioners, where they will be shared this autumn, but maybe more of them will be posted online. I do hope so.