Improving Maternity Experience

What a fantastic, and exhausting, couple of days at maternity events in Birmingham and the Wirral!  I was privileged to be invited to attend the National Maternity Review’s “Birth Tank 2” event on Thursday, along with my #MatExp colleagues Florence, Gill and Emma, and lots of other social media pals.  Emma has provided a round up of that event, so it is Friday’s event that I want to talk about here.

I was invited by Hilda Yarker to speak at the launch of Improving ME – a maternity review specifically for Merseyside, Wirral, Warrington and West Lancashire.  I met Hilda at a National Maternity Review listening event in Manchester, having been introduced to her on Twitter by Gill Phillips.  Hilda felt that it would be useful to have someone speak about #MatExp at the Improving ME launch, and due to David’s care at Alder Hey and my subsequent #hospitalbreastfeeding campaign I also have an angle on maternity in the Improving ME region.

The opening presentations at the launch event provided a fascinating insight into current maternity care in the area.  Programme Manager Catherine McClennan was candid about the challenges faced.  It was made clear that there is going to be a substantial change to maternity services in the region, and one of the key aims is to reduce variations and improve outcomes.  There are financial challenges, issues of quality and safety, a poor record on perinatal mental health and some of the lowest breastfeeding rates in the country.  It was agreed that quality, safety and experience go together and that “okay is not good enough”.

David Rowlands, Clinical Lead Maternity, Children & Young People for the Strategic Clinical Network, was clear that “average is not good enough – we need to be the best.”  His presentation gave a nod in the direction of the Each Baby Counts campaign, but David was also keen to stress that “pregnancy is a fantastically normal condition” and that unlike other doctors he deals with health, not illness.  As with so many other maternity discussions in the current climate, it was very clear there is a balance to be struck between focusing on safety and being mindful that pregnancy is not an illness.  David talked about stillbirth rates in the region and stressed that these are not just statistics – these are real, devastated, families.

The subsequent speakers gave their perspectives on the review, with collaboration being mentioned numerous times as a key focus.  From my point of view, it was wonderful to see breastfeeding spoken of as a public health concern, and to hear Liz Gaulton, Director of Public Health for St Helen’s Council, include breastfeeding as part of the focus on health and wellbeing.  There was also mention of a history of poor attachment being at the root of so many problems experienced by young people, clearly a reference to the work of 1001 Critical Days.

My own presentation was the first in the patient stories section, and I had a few different areas to cover.  I firstly wanted to demonstrate how many discussions about maternity are taking place on social media and to encourage delegates to jump in and get involved.

Nowhere is it more true that all voices are welcomed than in the #MatExp campaign, and I explained the origins and grassroots nature of #MatExp, encouraging anyone with an interest in maternity care to take a look.

I then talked about my own maternity experience with David and read out an excerpt from my blog post about his diagnosis, birth and first open heart surgery.  I mentioned the #hospitalbreastfeeding campaign and my website, but also wanted to stress that many postnatal experiences are taking place in Alder Hey Children’s Hospital, and that hospital  must be included in any review of Merseyside maternity services.

The National Maternity Review had already been mentioned a few times during the morning, and I again urged people to contribute their views if they hadn’t already.  I highlighted the key themes that my own Facebook group had fed back to the review via Sheena Byrom’s blog.  In particular, I picked up on the importance of collaboration with health visiting services, as this is so often missed as an issue for maternity care, yet can make a huge difference to the experience of families.  The issue is discussed further in this #MatExp post: http://matexp.org.uk/feeding/time-to-act-for-better-collaboration-with-health-visitors/

I ended with some pictures of my own family and suggested that maternity experience is about building happy families.  We all have something to say about our own experiences, the best things that can be replicated and the worst things that need to be eradicated.  The presentations from the parents who came after me certainly made that clear.

Grace Wood had been invited to speak about her experience of a traumatic birth followed by postpatrum psychosis.  You can learn more about Grace’s story by watching her interview on This Morning and buying her book, Saving Grace.  Grace’s key phrase for me was that midwives “are in the business of making memories”.  The nature of those memories can vary widely from family to family.

Monica and Kim spoke about their experiences, and Monica stressed that it is important for women to use their voice to help to shape maternity services, particularly by engaging with their local MSLC (maternity services liaison committee).  Kim described her two very different birth stories, and said that she didn’t know what was different between the two hospitals except that with her positive experience that hospital “seemed to care”.

Finally, Nicky Lyons from the Campaign for Safer Births told us Harry’s story.  An utterly heartbreaking example of poor, unsafe care resulting in serious, debilitating and life limiting illness for the child.  And devastation for the family.  Nicky’s key observation was that “labour is a moving train – there is no time when things go wrong.  There is no pause button.”  A very moving presentation and a reminder that safety cannot be an afterthought in maternity.

Unfortunately I was unable to stay for the afternoon session, but I did manage to do a bit of networking over lunch and met up with some Twitter pals.  Natalie Nuttall, founder of The Smile Group, and patient representative for Bliss, Ben Wills-Eve, joined me for some excellent chocolate cake and reflection on the morning’s presentations.  I was able to discuss breastfeeding with Liverpool Bambis and Homestart Wirral, and discuss continuity of care with OnetoOne midwives and local commissioners.

Many of the key themes being discussed were issues that had also come up at the Birth Tank event, and that keeping coming up on #MatExp.  We are all on same page, we know what outcomes we want to achieve and on what we need to focus.  The only way to achieve real change is to keep talking and to push forwards together.  Improving ME certainly seems to understand that.

Let’s Dance!

Some time ago now Sheena Byrom very kindly sent me a copy of the book The Roar Behind The Silence, and asked me to review it.  I set it to one side and put it on my ever expanding to do list.  The first bit that I read I found fascinating but then it was a question of finding the time to read more.  Finally I sat down expecting to be captivated.  But the first emotion I experienced when reading more fully was frustration.

Not frustration with the messages in the book so much as frustration that the book needed to be written at all.  So many of the points being made ought to be a given in maternity care:

“Health professionals need to model compassionate, respectful and effective care to students and trainee doctors working with women in developing health professionals and a service for the future.”

You mean that doesn’t happen already?

“All Heads of Midwifery should ensure they are visible and accessible so that students feel able to discuss practice.”

Well….. yes!!

“Don’t sit and watch when you feel something is wrong: do something about it.  Stand up for what you believe in, if you can.”

These are messages that as a citizen outside of the NHS I would expect to already be engrained.

But of course they are not.  I have been involved in the #MatExp campaign for nearly a year now, and I have been listening to the birth stories of women for over four years, and I know that these messages do, unfortunately, still need to get through in some areas.  There are wonderful, compassionate, amazing birth professionals out there, in all levels and professions, but yes these messages do still need to be heard.

A midwife of my acquaintance told me that the book inspires her, and if she is having a difficult time she uses it to refresh her and embolden her anew.  With that in mind, I approached the book again, and put aside my frustration.

It is impossible for me to read this book with “fresh” eyes if you like, as I have come to know so many of the contributors over social media.  I have discussed many aspects of birth and healthcare with them, and have found areas of agreement and areas of distance.  It is also inevitable that I will see the book through the lens of #MatExp, especially as the campaign’s stated “heart values” have much in common with the messages in ROAR.

One thing I do love about this book is that it focuses on action. Again, it has this in common with #MatExp.  Each chapter ends with clear messages and action points for readers to take forward, making it very clear how individuals can make a difference and put into practice the suggestions of the authors.  In their chapter on human rights principles, Diana Bowser and Mande Limbu state “Each individual maternity care practitioner, service provider and service funder needs to think ‘what can I do in my everyday job to reduce disrespect and abuse for mothers and babies’, and to put the resulting solutions into action every day.”  Hard to argue with that.  Tracey Cooper in her chapter on promoting normal birth tells us that “YOU CAN make a difference.”  Each one of us has the capacity to influence change, no matter how small.

As part of MatExp’s “Oxytocin October” (#OxyOct) midwife Sally is tweeting her favourite actions from the book each day.  I would like to add in here a few of my personal favourites, namely:

“The rights of women, midwives, and all frontline staff should be mutually respected in maternity care design and delivery”

“Find and connect with the right people: people who share your values”

“Work across boundaries and disciplines, looking at issues from as many perspectives as possible and really listening to others”

“Fathers also deserve to be treated with compassion and respect, as they are vulnerable in their own way”

“Notice how you feel when you are stressed and what situations make you feel stressed.  Manage self-expectations and those of others!”

And of course Teresa Chinn‘s excellent advice to “sign up to Twitter and start or join in a conversation about compassion and reflect on your experience.”

In truth there are many many messages in this book with which I agree, and then again there are some I would question.  It is undoubtedly an answer to a particular perspective on maternity care and the experience of those working within it.  It may not be your perspective, but it is nevertheless important to reflect on why the authors felt it needed to be written.  The title itself is very telling – there are people who feel the need to “roar” like lions yet feel that they are silenced.

Sadly there are many people who perceive themselves to be silenced, or feel that others wish that they would be.  I remember a conversation on Twitter some time ago about how some people may feel more able to “squeak” than to ROAR, but they are still making their voices heard.  We have joked before that #MatExp is something of a “carnival of the animals”, and as a parent this all reminds me of one of my family’s favourite books, “Giraffes Can’t Dance.”

For those of you not familiar with Giles Andreae and Guy Parker-Rees’ work, it centres on Gerald the Giraffe, who goes along to the annual Jungle Dance and bravely steps up to have a go.  He is laughed off the dancefloor because “when it came to dancing he was really very bad.”  Gerald then of course discovers that he doesn’t have to dance to everyone else’s tune, and the book concludes that “we all can dance…when we find music that we love.”

The Roar Behind The Silence might not be the music that you want to dance to, but it is a compelling tune.  Whether you want to roar, squeak, trumpet or squawk your message, it is important that all of us join the dance.  This was articulated brilliantly in a slide by The Family Nurse Partnership from yesterday’s BfN conference:

Moving together in partnership, being responsive, not trying to assert force over others…. These are messages that #MatExp and The Roar Behind The Silence certainly have in common.  This is not a book that has all of the answers (nothing does).  But it is hard to see how anyone can engage in debate about modern maternity services without having read it.

So if you are a healthcare professional working with birthing families, a commissioner of those services or an advocate for those who use maternity services please do read this book.  Please also join #MatExp, on Twitter, Facebook or via the website.  Let’s find the music that we love and move together.

Let’s dance.

Health Visiting – Sponsored by Nestle?

Unite-CPHVA is the Health Visitors’ union.  They have a conference every year, big affair, lots of important topics discussed.  Many of the individual sessions are sponsored by businesses.  I would hope that delegates ponder this when considering the quality of information that they are receiving.  I guess a conference is an expensive thing to stage and sponsorship comes in handy.  Nevertheless, I have huge concerns over two of the talks this year:

12:35 on Day 1

Feeding for the future

• Breastfeeding: The ideal start for a healthy future
• Assessing the importance of growth patterns
• Exploring optimal nutrition for optimal health outcomes

Professor Alan Lucas, Professor of Paediatric Nutrition, University College London

Supported by Nestle

10:30 on Day 2

Weaning the cows’ milk allergic infant

• Understand the nutritional challenges of weaning an infant with cows’ milk allergy
• Recognise the options for achieving a nutritionally balanced weaning diet for an infant with cows’ milk allergy
• Receive practical tips to pass to mums

Rachel De Boer, Paediatric Allergy Dietitian, St Thomas’s Hospital London

Supported by Danone Nutricia

Now, I know that some of you will immediately see the problem.  Not everyone will however, so let me explain my concerns.  It is easy for me to put them together, as I already contacted the professional officer at Unite responsible for these decisions.  I emailed him back in February as I was aware that these conferences often feature Nestle and Danone.  This is what I wrote to him:

Dear [NAME]

[NAME] kindly gave me your email address when I met with him before Christmas, as I have concerns regarding the advertising of infant formula at the Unite conference and in the CommPrac journal.

 

A quick summary of who I am, as I do not currently have a “professional capacity” being a stay at home mum.  I administer a support group for mums on Facebook (currently 1,500+ members).  I also run the #hospitalbreastfeeding campaign on Twitter and have set up www.heartmummy.co.uk to help HCPs to understand the importance of supporting breastfeeding on children’s wards.  I am not a trained breastfeeding peer supporter, but I have a total of 18 months of personal breastfeeding experience.

 

It was brought to my attention that your conference heavily featured infant formula companies.  This is a huge problem as the breastfeeding charities are bound by the WHO code, as is UNICEF Baby Friendly Initiative, so are unable to support events that promote infant formula.  The absence of the Association of Breastfeeding Mothers, La Leche League and the Breastfeeding Network from your conference is of huge concern, as they are the main sources of non-NHS breastfeeding support for mothers in the UK.  The Breastfeeding Network also runs the Drugs in Breastmilk Helpline which is a resource that all healthcare professionals need to be aware of.  The absence of UNICEF’s Baby Friendly Initiative is also of huge concern as it is this initiative which is driving forward NHS support for breastfeeding, including amongst health visitors.

 

The prevalence of infant formula advertisements in your journal is also of concern to me.  The opposition to infant formula advertising by those of us who wish to see improved breastfeeding support is often misunderstood.  We do not believe that formula should be hidden away or that parents and HCPs should be kept in the dark as to its properties and availability. Far from it – infant formula is a lifesaving product and many families have a genuine need for it.

 

However, healthcare professionals are just as susceptible to advertising and marketing messages as are the rest of us.  Proof of this can be found in the fact that many midwives and health visitors continue to tell mothers that Aptamil is the “closest formula to breastmilk” despite that claim being thrown out by the Advertising Standards Agency. (See http://archive.babymilkaction.org/press/press22july09.html and http://archive.babymilkaction.org/pdfs/lacorsonepage07.pdf).  Formula advertisements talk about “moving on” from breastfeeding, giving the impression that it is something for only young babies where in fact the WHO recommends children be breastfed for at least 2 years.

 

Health visitors, as you are only too aware, are incredibly busy people and they do not have the time to research every aspect of infant feeding and infant milk.  Formula advertising will give them the impression that infant formula is a reasonable substitute for breastmilk, when in fact this is clearly not the case.  It is nutrition for babies that do not have breastmilk, but it has hardly any of the properties of breastmilk and none of the additional benefits (see my website).

 

With this in mind, it is vital that health visitors obtain their information about infant feeding from unbiased sources such as the First Steps Nutrition Trust rather than the Infant and Toddler Forum which is funded by Danone.

 

An International Board Certified Lactation Consultant of my acquaintance posed these questions:

 

* How do HVs imagine they will be able to participate in the Baby Friendly Initiative (BFI) if the WHO code is so poorly valued and understood?

* How can Health Visitors in a BFI area understand the conflict between messages from UNICEF and messages from CPHVA? 

 

With the new emphasis from BFI on responsive bottle feeding it is particularly important that health visitors understand the way formula companies will try to gain access to parents through HVs.  Their marketing can be insidious, a prime example being the supposedly “supportive” video that has gone viral on social media, which is sponsored by a formula company.  The problems with this type of marketing are explored here: https://thelittlestranger.wordpress.com/2015/01/23/mommy-war-is-over-if-you-want-it/

 

Thank you for taking the time to read this email.  I look forward to hearing from you and discussing ways in which Unite can embrace the WHO code with regards to infant feeding.

___________________________________________________________________

The officer responded by asking me what specific questions I had for him so I asked “what plans does Unite have for significantly reducing the amount of formula advertising at its conference and in CommPrac?”  I was told that there are plans to reduce the percentage of advertising and exhibition space given to infant formula producers on both platforms.  This is due to updates to the union’s ethical policy as at summer 2014.

I also asked “with regards to the fact that WHO code compliant organisations cannot take stands at conferences where infant formula companies are exhibiting, are there plans to make future Unite conferences accessible to these organisations by removing the formula companies and replacing them with neutral organisations such as First Steps Nutrition?”  I was told that the mix of exhibitors is reflective of the union’s membership, which has a variety of opinion on this issue.

No doubt.  However, in the few conversations I have had with health visitors about this issue their main concern is that they need good quality information about infant milks and formulas.  Once they realise that this information is available via First Steps Nutrition (and is free from a marketing slant) they are less interested in the information that the companies themselves have to offer them.

Baby Milk Action has numerous resources explaining the unethical practices of Nestle, Danone and others, and why it is important for all of us to reject formula company sponsorship.  It is so easy for vested interests to encourage mothers and healthcare professionals to reject sentiments such as these on the basis of people “pushing” breastfeeding or being intolerant of others’ feeding choices.  So let me be very clear:

The use of formula is a valid parenting choice.  We need mothers and the healthcare professionals who support them to have a full understanding of the types of formula available, their contents, the best way to use them and their limitations.  We need mothers and the healthcare professionals who support them to have faith in breastfeeding so that when that is the chosen method of feeding it is not undermined by negative messages.

That is why I hope that Unite-CPHVA members call for a swift end to Nestle and Danone’s involvement in their conference.  Because their presence there restricts the access of HCPs to good quality information about formula.  It restricts their access to good quality information about breastfeeding.  And as a result it restricts the support that these professionals can provide to families.

It really is as simple as that.