It’s Complicated

The latest initiative for the #MatExp campaign is #MatExpOnTour, collating news of all meet ups, tweet ups, events and conferences where maternity experience is being discussed.  The tour bus made a stop in Manchester today for my #MatExp colleagues and I, but it was a more subdued event than the campaign is used to.  Emma, Susanne and I had the privilege of being involved in a National Maternity Review listening event specifically for parents who experienced complications in pregnancy, labour or birth affecting the health of mother or baby, including admission to neonatal care.  The session was facilitated by Bliss.

I had faffed around all week about this event.  First I was going, then I wasn’t, then I could, then I couldn’t, then I needed childcare and then I didn’t.  The truth is I was never fully confident that I belonged there.  In the end I did what I often do – I sourced feedback on the topic from a number of friends and contacts and took that along with me so that if I felt that my experience was invalid, well at least I had other people’s to discuss.

Invalid?  David was on NICU wasn’t he?  I experienced a complication in pregnancy didn’t I?  One minute we were planning a second homebirth, the next we were being prepped for a caesarean due to David’s congenital heart defect.  That certainly sounds like a complication!

But here’s the thing about complicated pregnancies, traumatic labours, postnatal struggles and spells on NICU: they are emotionally exhausting.  You are wrung out and trampled on and put through it and spun around and hung out to dry and worst of all at the time you don’t feel like it’s too bad.  Or you do but you’re numb to it.  Or you do but you can’t quite believe that it’s happening.  And by the time, months or years later that you are able to make any sense of it all you can no longer trust your memory.  All you have is a set of confused emotions and images, and you’re not really sure whether your experience was truly awful or whether you are just dramatising for effect.  And you are wary of people’s perceptions.

Which is why all three of us were anxious about attending today’s event.  Yet we needn’t have worried.  Yes it was very emotional – tears were shed.  But it was expertly facilitated by Bliss.  The questions they asked, the way that they listened, the comments they made, the compassion they showed, completely hit the spot and enabled us all to share what some of us had never shared before.  And enabled us to support each other and get across what we most wanted the maternity review panel to know.

It was agreed that the discussions would be kept confidential, but I think I can share with you some of the remarks that review panel Chair Julie Cumberlege made at the start and end of the session.  She opened by asking whether we should still be thinking in terms of “high” and “low” risk women, or whether we should be looking at families holistically and wrapping services around them.  She highlighted four areas that the review panel are seeing as important:

  • Kindness
  • Safety
  • The involvement of Fathers and Partners
  • That services be Professional

Baroness Cumberlege also made it clear that the review panel’s report is only the start.  They are “very determined” that the report will be implemented, but this will be a huge challenge.

At the end of our discussion, when we had shared the guilt, the anxiety, the depression, the fear, the anger and the confusion, we were asked to talk about the key things that would have made a difference to our experiences.  Some ideas that came up were:

  • Peer support in NICUs and on children’s wards
  • Better provision of information during pregnancy
  • Better communication between maternity wards and NICU
  • Time taken to explain what is happening to families
  • Kindness

Breastfeeding support was touched upon and I of course mentioned www.heartmummy.co.uk and the #hospitalbreastfeeding campaign. I also highlighted the worth of the Small Wonders DVD from Best Beginnings and expressed the hope that it will start to be given out on all units caring for premature or sick babies.  And that it be given out at the start of the stay, not when families are bringing baby home!

Julie Cumberlege said as she left that it had been “a real eye opener” to see “the implications for parents”.  I had been sharing the title of the session on social media all week: “for parents who experienced complications in pregnancy, labour or birth affecting the health of mother or baby, including admission to neonatal care.”  Today we looked at what those words actually mean.  Complications in pregnancy: fear, uncertainty, Googling strange terms, lying awake at night worrying about your unborn child, having birth choices taken away from you.  Complications in labour or birth: terror, loss of control, confusion, pain, loss of consciousness, bewilderment.  Affecting the health of mother: pain, fear, guilt at not being able to fully care for her baby, long term mental health issues even when physical wounds are healed.  Affecting the health of baby: confusion over medical terms, uncertainty over what you are allowed to do with your own child, gut wrenching fear and anxiety, feeling that your baby belongs to the hospital, and guilt.  So much guilt.

I hope that the review team is able to influence the way that families are supported in these circumstances.  I hope that it is remembered that many babies are transferred to children’s wards so postnatal services need to stretch that far.  But most of all I hope that maternity services of all stripes are restructured in a way that encourages kindness.  Give us your time.  Give us your attention.  Give us some information and give us your understanding.  Because we’ve had a fair amount taken away.

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If you have experienced complications in pregnancy, labour or birth affecting the health of mother or baby, including admission to neonatal care, please complete this anonymous survey for the National Maternity Review.  Open until 30 November 2015.

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9 thoughts on “It’s Complicated

  1. susanneremic says:

    Helen it was so lovely to meet you yesterday and I was so glad to have you and Emma by my side. This is a wonderful overview of the afternoon and I truly hope that after finally being listened to, we will also be acted upon x x x x

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  2. I’m really heartened by this, Helen. There is so much here we have been talking about for ages. I hope they finally listen – but this does give me hope. I shall see what happens in the London version in a couple of weeks’ time xx

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  3. downssideup says:

    Very important work Helen. Would love to get to one of the sessions but I doubt you’ll make it down to Cornwall. There are so many things than can be done to improve the experiences of those receiving an unexpected diagnosis for their baby, whether in NICU or antenatally. it’s really important to join up all the good practice and learn from what doesn’t work so well isn’t it.

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    • Thank you Hayley. I’m not a member of the National Review team but members of #MatExp have been privileged to be able to feedback to the review in a number of ways. I know you have provided yours too. Joined up thinking and collaboration is absolutely what #MatExp is about. I am going to be speaking to people here in the north west about peer support on NICU – I will keep you informed. H x

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