'There is nothing higher value to society than improving the way we are born'

An interview with Dr Neel Shah MD, MPP, Assistant Professor, Harvard Medical School 

 
 

Hello Dr Shah, what an absolute pleasure it is for me to have the opportunity to interview you for my blog. Thank you so much for your time!   I first became aware of your work via social media, and I was instantly intrigued by your interests, and approach to maternity care. The article below drew my attention (click on image).

 

For those who don’t know you, could you tell me a little more about yourself, your background, and your current position?

Sure! I wear a few professional hats, but first I am an Obstetrician/Gynaecologist, which means I get to care for patients at critical life moments that range from surgery to primary care to childbirth. I’m also a scientist that focuses on designing, testing, and spreading health systems innovations that can measurably improve patient care.

 What made you choose the field of obstetrics and gynaecology? 

The clinical breadth was compelling—because we provide primary care we need to consider how patients are accessing the healthcare system; because we perform surgery, we need to consider how we deploy expensive technologies equitably. But most of all, I just loved delivering babies. Even when you are exhausted and it’s the middle of the night, there is no existential crisis when you are assisting a birth. It’s awesome every time. Never gets old.

 What do you think are the main barriers to improving maternity care and outcomes in the USA?

It is not knowledge. There is a tremendous gap between what we know and what we actually do. Closing this gap feels imminently possible to me. Improving care requires science and measurement and value propositions. But it also requires effective advocacy—building coalitions with aligned interests and establishing consensus.

 

I understand as well as working was a clinical doctor, you are the founder and executive director of www.CostsOfCare.org.  Can you tell us a little bit about this organisation, and why you set it up? 

My profession provides the most expensive services that any patient (or society) will spend money on in their lifetimes, but at the point of service we rarely know what anything costs. In medical school this drove me crazy. It also occurred to me that although nobody goes to medical school to treat the GGP (Gross Domestic Product - healthcare in the U.S. is nearly 18%GDP which means about 1 in 5 dollars is spent of healthcare), my colleagues often had important insights into the opportunities to make care more affordable. I formed Costs of Care six years ago to ensure that these insights percolate into the public discourse.

It is obvious you are passionate about making childbirth safer, and less expensive, and you are undertaking research in this area. What does the research entail, and why do you think this is important?

Most of health services research is about diagnosing problems – we detect variation in the quality of care but fall short of doing anything about it. Instead, intervention is left to administrators, policymakers, and other “implementers.” By contrast, my research (based at a place called Ariadne Labs in Boston) is predicated on the idea that we have a role to play in intervention too – in designing solutions that have potential for scale, and then fielding, monitoring, evaluating, and many cases spreading these solutions far and wide.

We are becoming increasingly aware of the iatrogenic damage caused by unnecessary interventions in childbirth, and the potential consequences. You have been recognised for your work New York Timesin this area, can you elaborate?

Media attention is helpful because ultimately, women have to be the driving force behind changes and improvements to our system. There are two ways that we inadvertently harm patients. The first is by doing too little – there is a broad and intuitive understanding of this. The second way is by doing too much – this has been much more challenging to explain. I agree with you that there is increasing awareness and awareness is a necessary first step. The next step, the hard work in front of all of us, is to then do something about it.

I was thrilled to see that you are listed amongst the 40 smartest people in health care - WOW! What an accolade! How did you feel about that?

Superlatives are always great! You have to be suspicious of any list that aims to plausibly put me next to Barack Obama, but flattering nonetheless. Hopefully this type of attention will help elevate the visibility of the issues we are aiming to fix in maternal health.

If you had 3 wishes granted which you feel would improve outcomes for childbearing women and their babies, what would they be?

There is nothing higher value to society than improving the way we are born. And there is a lot to improve. In the United States right now, 80% of government spending on healthcare goes to the last month of life. With a fraction of that investment, we could do a lot to ensure women and babies are getting better care.

 Lastly….who are your inspirations, and why?

I’m so fortunate to be surrounded by people who inspire me. My dad taught me to be curious. My mom taught me to be resilient. My brother taught me to take the road less traveled.

Professionally, I work with one of the people I admire most - Atul Gawande. He’s inspiring because he is a tremendously gifted writer, researcher, and surgeon, but there is more to it than that. He is also one of the most generous mentors and leaders I have worked with, and has this unflappable sense of purpose and focus on doing work that will have impact.


Dr Shah, I am forever grateful to you for highlighting and taking action on matters that affect us all, wherever we live, or are born. And also, for connecting with me when I invited you to, and for responding to me so generously. I hope to meet you one day!

Dr Neel Shah can be found on Twitter @Neel_Shah

What one group of mothers feels the National Maternity Review Team should know

I am delighted to introduce Helen Calvert, mother, play-group leader and campaigner, who positively supports parents and maternity services. Helen's post is number 5 of my #FlamingJune action for #MatExp, to inform the National Maternity Review team of key issues, and she actively sought out the views of parents using social media.  Thank you Helen! 

 

For the last 3½ years I have been running a Facebook group for mums.  What began as a way of talking privately to my “mum” friends has turned into a group of over 1,500 mothers across the country. 

 A desire to share some of the birth stories from my group was what first drew me to #MatExp and I have since become more involved in the campaign.  As one of her ACTIONS for #FlamingJune Sheena Byrom is publishing a series of blog posts about what the National Maternity Review Team should know, and she asked me to contribute.

 Last week I asked the group “what would you like the National Maternity Review Team to know so that they can improve maternity care for UK families?”  The group has no particular emphasis when it comes to birth plans or feeding choices – the only things we have in common are that we are mothers and we have Facebook accounts.

 What is important to us?  What makes a difference?

  • Continuity of Care
  • Individualised Care
  • Presentation and Provision of Information
  • Listening, Respect, Control
  • Compassion and Communication
  • Collaborative Working
  • Postnatal Care
  • Breastfeeding Support

 Continuity of Care

This theme was probably the strongest.  Women want to know the people who are delivering their babies, they are unhappy with having to explain their story over and over again and with receiving conflicting advice and opinions from a number of different birth professionals.  Group members talked about building relationships with their midwives, knowing the professionals helping them to give birth and getting to know a small team.  This is currently not the reality, with one mum commenting “I didn't recognise anyone at the birth”.  Some families are choosing homebirth precisely because the homebirth team available is a smaller team and it is more likely that they will know the community midwife who attends their labour.

 Continuity throughout pregnancy, birth and the postnatal period is what women are so keen to experience, but even continuity and consistency whilst in hospital would be a step forward.  One group member explained:

“I feel continuity is a major factor too!  I was on a lot of strong painkillers postnatally and every time there was a new shift they questioned why & wouldn't give them to me until they checked (I was in agony by the time they came around again crying in pain!). Then they’d realise a consultant had ok'd it. I felt like they didn't read notes well & looked at me like I was a druggy! So knowing your patient prior to seeing them could be a good one / better handovers?”

With birth being such a personal and individual experience, and with very few women feeling comfortable discussing their mental and gynaecological health with a stranger, continuity of care can only improve outcomes.  As one woman commented:

“Without continuity it's so hard to build a decent relationship with your midwife, and therefore it's just not easy to be open with them and they with you. I think it's vital for mums.”

 Individualised Care  

As a partner to continuity is the idea of care being provided with the individual in mind.  The current feeling is that there a “boxes” pregnant women are forced into, and once you are in a “box” your care is structured accordingly, with little thought to your individual circumstances, personality, fears and wishes.  An understanding of what is important to that particular family can make a huge difference to their maternity experience.

 “...the midwives there (Ashford Hospital) knew that I was gutted I'd not got my home birth and so they basically recreated a home birth atmosphere for us (dimmed lighting, blankets, left us alone together) it was an altogether lovely experience and didn't feel high risk at all.”

Individualised care is even more important when a family have been told that their baby is seriously ill:

I didn't fit into any box with my first born due to his antenatally diagnosed exomphalos (and postnatally diagnosed diaphragmatic hernia). Antenatal classes were all relevant but I felt so aloof. Who is giving birth at x? Who is giving birth at y? If complications arise you'll go from x to y so if you want to have a look around y then book that in (then we were shown round hospital x). But poor old me couldn't put my hand up as I was being induced at hospital z. Also in the breastfeeding class, no consideration was given to breastfeeding a baby in NICU. I had to speak to them at the end. And they didn't know much. We didn't fit in. Maybe specific antenatal classes for people in our boat at specialist centres would be better than the ordinary ones?”

Presentation and Provision of Information

Mothers talked about having to seek out information for themselves, and having to ask “am I allowed...?”  Antenatal classes were discussed and it was suggested that they focus more on birth as a normal bodily function and how hormones and environment play their part.

One message that came through strongly was that families would like to be given their birth notes as standard.  It is so important that parents can understand what has happened to them and to their baby.  Finding out that baby was back-to-back, that you had a PPH, that there were complications that made physiological birth unlikely – all of this is important for women and surely it is their right to know these details?

For me the one thing I'd like to see change is for everyone to be given the option of having a copy of their notes when they are discharged from hospital. In hindsight, I felt like a bit of a failure after the birth and I was so fearful of giving birth again. If I'd known more about what had actually happened I'd have realised that I did blooming well under the circumstances. It was only after support from others on this group that I pushed to get access to my notes and I finally gained a bit more confidence.”

Listening, Respect, Control

Many women discussed feeling as though the midwives had not listened to them – had dismissed their pain, had questioned their stage of labour, even questioning whether their waters had really broken or whether they had wet themselves.  These women felt patronised, belittled and ignored.  There were also examples of women's concerns being dismissed leading to serious health complications for them and their babies.  Feeling as though they are listened to and are in control of their own birth experiences is very important to women. 

I know both my pregnancies and births were full of complications, but there were still opportunities that I feel were missed, that could have given me more control and allowed me to lead my labours more effectively.”

Compassion and Communication 

The experiences where compassion was lacking were, for me, the hardest to read.  The language used, the way that some women are spoken to, the way that some are treated – at this vulnerable and important time – never ceases to shock me. 

“When I threw up I got told off for not using the sick bowl which was in the bathroom. To clean it up she took the sheet from the bed and swirled it round with her foot and left it all on the floor.”

All women deserve compassion and understanding, but this is never more true than when a woman's notes include the information that she has been a victim of abuse

“The matron I had post-delivery was very damaging - especially as I've been abused and find physical contact difficult. She would literally pinch my nipple into my baby's mouth and leave me not caring when I said it hurt.”

When care HAS been compassionate and communication effective, this is what the family remembers.  Women spoke about their midwife putting them at their ease, being someone they could talk to about anything, being patient and giving hugs and reassurance.

 “I know it’s a day-to-day thing for midwives to see women in labour but it isn't a day-to-day experience being in labour.”

Collaborative Working

There was some discussion of how midwives and consultants work together, and how this can be improved.  Women want to see the knowledge of these two groups combined, rather than used as a tug of war between professions.  What is most concerning is those women who appear to be caught in the middle of professional disagreement:

My midwife and consultant openly disagreed on my treatment, to the point where the midwife told me she didn't agree with him and he was wrong and she refused to carry out the treatment plan he had recorded on my notes.”

Postnatal Care

Very few women had poor experiences antenatally, but postnatal care is the area most cited as being problematic.  The lack of time that midwives have to help with feeding and to give advice, especially to first time mums who will be anxious about things the midwives might see as “minor”, e.g. how to cope with the cord stub whilst changing nappies.  Many mums felt abandoned postnatally – after all of the preparation for birth, classes and discussions, once baby arrived they were alone. 

Two issues came through strongly:

 ·       The problem of fathers and partners being sent home from postnatal wards

·       The handover between midwives and health visitors

 “On the first night of OUR baby being in the world he had to miss it coz he wasn't allowed to stay.”

“I was solely responsible for baby after going through labour and I needed his support.”

The handover to health visitors needs to be much slower and more gradual. With my first, I felt I'd barely given birth before I was shunted over to some other service that I had barely heard of and certainly didn't understand. I didn't have any faith in myself and was in no condition to form a trusting relationship with some new random professional.”

Mental health was also discussed, with one mother explaining that the noise on the postnatal ward made it impossible for her to sleep, and this sleep deprivation coupled with anxiety led to postpartum psychosis.  “Someone should have noticed my deterioration and tears.”

Breastfeeding Support

As always, breastfeeding support was said to be lacking.  Families are sent home too soon without a full feed being observed, and are then often readmitted or switch to formula feeding due to weight loss, nipple pain or a lack of understanding of what are normal breastfeeding patterns.

“All I wanted was for someone to just stop and really talk to me and address the issues, someone who ACTUALLY knew what they were talking about in terms of breastfeeding, not someone who was just going to come in to try and patch over the issues and tick me off as job done.”

I hope that these views from a range of geographical areas and different types of women are of use to the National Maternity Review Team.  I hope that ordinary, extraordinary and everyday maternity experiences can help to change childbirth in the UK.

Helen Calvert 2015

Follow me on Twitter! @heartmummy

Neighbourhood Midwives' Mothers Fund: guest post by Annie Francis

I first met Annie Francis many years ago....and realised almost immediately that she was a woman of incredible substance: a wonderful midwife who was passionate about her work, about childbearing women having the best care possible, and who was willing to stand up for what she believed in. Since then, Annie and I have shared the same spaces, striving to maximise opportunities for all women to have a positive birth experience. Recently Annie invited me to become part of her exciting new venture, and of course I accepted. What an honour. I asked Annie if she would write a guest post for my blog, explaining more about this exciting news, and to tell us a little more about  and her plans for the future. 

Hi Annie! Thank you so much for agreeing to write this post, when I know how incredibly busy you are. Can you tell me a little bit more about Neighbourhood Midwives (NM), and about the new Mother's Fund? 

   Annie Francis CEO Neihbourhood midwives

 

Annie Francis CEO Neihbourhood midwives

'Hi Sheena....I'll try! I've never done this before, so here goes....

Here at NM we have a simple organisational purpose:….to become an exemplar of a way of delivering midwifery care.

For every decision we make and every action we undertake we ask the question… does this serve our purpose? It is an incredibly powerful way of ensuring that we remain focused on our goal, but also helps when discussing difficult issues - it’s easier to have honest and open conversations when you can keep the shared vision in mind. This week has seen the four of us - all midwives ourselves - who set up Neighbourhood Midwives make a real and significant shift in our understanding of the practical ‘how’ we try and make our purpose and our vision a lived reality.

It has come about through our reading of a book – ‘Reinventing Organisations’ by Frederic Laloux and the case study of Buurtzorg, (which means neighbourhood care), a self managing, Dutch nursing organisation based in the community. Everything we have read about Buurtzorg has chimed with what we are trying to achieve with NM and so, as advocates of active learning, we wasted no time in getting in touch with Jos de Blok the founder, to see if we could go over to meet him and the result is a ferry booked and a trip planned for mid April…'

This sounds really interesting! I am in Holland at the moment, and will make some enquiries. Annie, what would you say to those who suggest that NM is another example of the privatisation of the NHS?

'Firstly, it is important to remember that the NHS has always used private contractors. GPs, dentists,  pharmacists and opticians are almost all privately owned. There have always been private providers of various services in mental health. The private sector is involved  throughout the NHS providing IT systems, drugs, buildings etc. Most Foundation Trusts use the income from private services to subsidise their NHS work so it is a much more complex picture than is often portrayed.

One anxiety often expressed is about private profit going to the shareholders but as an employee owned, social enterprise, any surplus made within Neighbourhood  Midwives will not be siphoned off as dividends for external shareholders, but reinvested into the organisation to improve our service and the welfare of our employees. Our constitution has been written to reflect this position and, should we ever be faced with a hostile takeover, we also have it written into our Articles that any profit from that forced sale would go to a suitable women's charity, not to any individual.

As independent businesses, GPs have a contract with the NHS to supply their services  - we would be no different and would be paid the current tarrif for maternity care, no more and no less - just as any other provider giving care under the NHS banner. 

The third sector - social enterprises, co-operatives and charities have always had an important role in providing services to the NHS and there are some important benefits attached - smaller, lean and flexible they can more easily target 'hard to reach' groups and can in fact often provide care much more effectively and efficiently than a large and unwieldy bureaucratised system.  They have an important role in increasing choice for women/ patients and breaking up the monopoly which can lead to lack of innovation and complacency on the part of the sole provider.

With the correct safeguards in place, my belief is that increased third sector involvement from small, community based providers such as NM can only be a good thing and, with the emphasis on improving outcomes as well as needing to save money, it is time to give us the opportunity to demonstrate what we can do'. 

Thanks for clarifying. Would you like to tell us a little about your new initiative?

'Yes! Last week we had the first meeting of the fabulous trustees of our new charity – the Neighbourhood Midwives’ Mothers Fund. The reason we have taken the decision to start a charity is simple, it helps us meet our purpose. Having successfully launched our private service in July 2013 we have been busy building our track record as the first step towards being ultimately commissioned by the NHS. We know that isn’t going to happen overnight though and, through the Maternal Health Alliance’ campaign, Everyones’ Business, we are increasingly aware of the critical lack of perinatal mental health provision in the UK.  

Even where this service is provided, the reality is that most areas are unable to offer it through a caseloading and continuity of midwife model. As a social enterprise, always looking to fulfil our social aims and knowing that there is considerable evidence that this type of care can make the difference for women struggling with such issues, we have come up with an additional step along the road to our first NHS contract – to register as a charity, called the Neighbourhood Midwives’ Mothers Fund.

We envisage that it will work in a similar way to the Macmillan & Marie Curie model but with a dedicated midwife providing individualised, holistic midwifery care for each woman referred, who can also act as her advocate and co-ordinate her care with the appropriate NHS/multi-disciplinary teams according to individual need… We are really excited by the possibilities and now we get to have lots of fun doing the fundraising!

So far we have three Trustees, selected for their expertise and dedication to to the cause. These are Cathy Stoddart, Emma Mortoo, and you Sheena!' 

Thank you again Annie, what a privilege this is for me. I'm excited to get going now, and to help you to support families most in need. For me, I think this could be a blueprint for other areas, and a catalyst for change for the whole country and beyond. 

Lastly Annie,  I believe you have been selected to be part of the national maternity review team, brought together by NHS England! 

'Yes, I was delighted and honoured to received an invitation to be on the panel. We were already aware that the Five Year Forward View has some very helpful comments about future models of care in maternity:

'To ensure maternity services develop in a safe, responsive and efficient manner, in addition to other actions underway – including increasing midwife numbers - we will:

·       Commission a review of future models for maternity units, to report by next summer, which will make recommendations on how best to sustain and develop maternity units across the NHS. 

·        Ensure that tariff-based NHS funding supports the choices women make, rather than constraining them.

·       As a result, make it easier for groups of midwives to set up their own NHS-funded midwifery service.  

And so, with the indefatigible Baroness Cumberlege at the helm, I’m really looking forward to contributing my thoughts, knowledge and experience to help make this review a genuine opportunity to explore some new options and different ways of working… the evidence is out there, we just need to be prepared to think outside of the box and, in the words of Goethe:

Knowing is not enough; we must apply. Willing is not enough; we must do’

I am delighted that you are part of the panel Annie, and I know my friends and colleagues are too. We want this review to be the lever for change to enable improvements in the way we deliver maternity services in England, and beyond. Please let us know how we can help you! 

There are several ways to connect with Annie, and Neighbourhood Midwives:

Website: neighbourhoodmidwives.org.uk

Twitter:  @neighbourhoodmw

Facebook: www.facebook.com/nbrhoodmidwives